More Mommy Moments

Last week was another one of those weeks where I am overwhelmed with what God wants for Jacob's life. Jacob has "been gone" for over a year but this week I have had some serious "mommy moments"....these are moments that I get only from Jacob.....because I don't have graduations or championship games to go to for him.......I have a glimpse of where God reveals another way He used my baby boy to impact this world for His good. Who was it this week ?????.....about 90 sophomores in a New York State public school were touched by Jacob AND Beth Moore testified at her Living Proof conference in Pittsburgh, that every day since she met us 8 mama friends in Atlanta about a year ago, our stories impact her every word of Truth she uses. How did this all come about?

First off, a biology teacher at my mother's place of work (as well as my former high school) had her classes follow Jacob's blog last year because of the rarity of being able to see a live baby with T18. This year, although he isn't with us, her class used the blog as a reference during her genetics portion. Upon hearing this, I contacted the teacher to thank her for allowing my boy to be of such influence and offered to come and talk to her classes. She was enthusiastic and really wanted me to connect the kids with a real story that showed that these babies, regardless of medical advice, defects and less than perfect abnormalities, are not just items to abort but rather miracles of life that impact us and have worth. It was very easy for me to get up there and talk about my sweet boy for how ever long I had! I was able to talk to 3 classes and the students were so respectful and polite. I brought some of his tiny items, pictures and his pamphlet from his 'Celebration of Life' service. They asked questions and hopefully gathered information on how to parent from a loving perspective verses a medical/clinical perspective. These students got a glimpse of a mama who loves her sweet boy regardless of what the world's standards are for worth living. He was compatible with life and they saw that. I just keep saying, "90 kids in a New York State public high school?!?!......really God???... THANK YOU for an unheard of opportunity!!! :) " It is one of those things that you have no idea how impactful it will be but you take every opportunity, plant the seeds that may be watered by other situations and bloom into something that glorifies the Savior.

Next, one of my sweet mama friends went to see Beth Moore in Pittsburgh and with her brought a photo book of when we met Beth in Atlanta as well as various pictures of each families babies; with our babies that have passed as well as a picture of all of us with our "baby after". Every single one of us 8 mommies have a "baby after" and even though I had to send a picture of an ultrasound, Jeremiah was included since I am holding him in my womb! There is a video of Beth teaching (and Chrissy crying!) and sharing with Pittsburgh the story of how our babies and stories impact her everyday.


These are my moments. I get to sit and relish in what my sweet boy is doing for the Kingdom of God. God uses him everyday in my heart and in the hearts of others and that makes me a proud mama of a true champion.

365 Days In Heaven

Although we miss you, precious child, we know that you have been having the time of your eternal life in the presence of our Creator. There hasn't been a single one of the past 365 days that we didn't wish we could touch your soft hair, gaze into your blue eyes, poke your tiny scrunchy nose, and roll your pea-size toes....but we know that you have been made whole and live fully in the presence of the One who made everything about you perfect. We are so proud of everything you did in your time here on earth and your memory continues in the hearts left here. We miss you sweet boy (understatement).....Happy Heavenly Birthday.

Lasts

So, here we are.....in the 51st week after Jacob's death (I didn't really count....I just know there are 52 weeks in a year so I did the math). There aren't many weeks that I play back in my mind, but this one is just too significant not to.....it was his week of lasts.....and although we were blessed with so many firsts and seconds and thirds, it's the thought of his lasts that overwhelm so many of those thoughts. His last birthday celebration where his older brothers leaned over his sweetly sleeping body and sang happy birthday ever so softly as to not disturb him. His last cardiologist appointment. His last doctor's appointment (of so many) where we expected him to overcome since that was what he always did. His last nurse's visit. His last bath. His last visitors. His last night with his mama on the couch. His last blog entry. His last boys night. His last snuggle on his mama's chest. His last kiss from his mama. His last breath.... (the thought of it....since I missed it). Overwhelming. Everyday it is overwhelming. Every night before I fall asleep I fight the overwhelming thought of "this actually happened." I don't need a date to remind me that I miss my sweet boy. I don't need a calendar to tell me when to weep....we just deal as we go. I just know that there is something missing. A mother's job is to be needed and busy among her children....I no longer have that earthly job with Jacob physically and I haven't for the past year but it is a job that I will forever feel I need to fulfill. So although he had all his lasts just about a year ago, his memory is forever lasting in the hearts of those who love him and who have been changed by his 138 days on earth. God continues to use Jacob's life for His glory even today, almost a year after he has passed. So Jacob hasn't touched his last heart.....he is lasting, remaining safe in the arms of Jesus, where he will be.....until I get there and snatch him up! :) And my precious boy lasts here in my heart and the hearts of others until our last days. I know my last tear has not fallen for my sweet tiny boy....there will be many more....I'm taking one day at a time, until we reach our last.

Just an Update

Well Hello there! The past few weeks have been so busy with lots of good things and I just wanted to let you all know that things are well. Our Baby Boy Fahmer #4 has taken on the name Jeremiah Gabriel.....the boys pray for him as Jeremiah and talk to him as Jeremiah so Jeremiah it is. Jeremiah is growing strong....his kicks are very noticeable inside and out, his heart beats are strong, his cardiologist says everything looks great, and we have no red flags. We understand that good reports from doctors doesn't mean God will give us another day with Jeremiah but it is nice to have hope of a baby we just may be able to keep. The boys pray for him to be able to grow up with them multiple times a day and love to take a shirt or pants they have grown out of and put it in the nursery for Jeremiah to grow into. I have been feeling well. The dramatic weight gain always takes a toll on any body so I am feeling that but I haven't been dragging and terribly sleepy.....I have energy! Jason is careful to make sure I don't over-do it outside with our boys or in our gardens or around the house....I am spoiled. I will be 27 weeks on Tuesday so I am into my third trimester already! Jeremiah measures right on time, my tummy measures just under 25 weeks (I have always measured small) and time is flying by as we approach summer.

Emotionally, when I think of Jeremiah, I am excited and loving my everyday of having him to myself and hopeful of sharing him with the world. I have very brief in infrequent moments of weakness (or should I say reality) that I may not be allowed to keep him but I am not fearful. Emotionally, when I think of Jacob, I miss him....terribly. I fight the thought of the 31st this month and remind myself that it is just another day that I will miss my sweet boy and no matter the day or time, I will not miss him any more of less. Just this time of year, the boy is constantly on my mind. I spent last year in my garden while he slept at times and we would run in and check on him and then there were other times when we would bundle him up and he would spend the day with us outside in the fresh air and be in our yard in his stroller or on my chest. It is just funny how last Spring, just that one with Jacob in my lifetime, with spending my every day and night with Jacob conditioned me on what Spring feels like and now anything different than having him is just different....someone is missing and every fiber in me knows it and that feeling is in full bloom.

Mother's Day was so sweet. The boys made me breakfast in bed and showered me with homemade gifts that mean nothing to anyone else but mean the world to me :) And Jason helped the boys get me a beautiful picture frame with this poem on it:

"Dear Momma, If I could give you diamonds for each tear you cried for me, If I could give you sapphires for each truth you've help me see, If I could give you rubies for the heartache that you've known, If I could give you pearls for the wisdom that you've shown, Then you'll have a treasure, Mother, that would mount up to the skies, That would almost match the sparkle in your kind and loving eyes. But I have no pearls, no diamonds, as I'm sure you're well aware, So I'll give you gifts more precious, My devotion, love and care. We love you soo much Mommy, Joshua, Jonathan, Jacob and Jeremiah - 2009"

Talk about tears! They put a picture in it of Joshua holding Jacob's bear and Jonathan holding Jeremiah's ultrasound....my 4 boys.

We also had a vacation to Walt Disney World! My parents had talked for a few years about taking us and the time finally came and we all went for a week the first week of May. It was a great time! But talk about walking!....I can't believe I still gained weight after walking how ever many miles.....it was a great motivation to get me to walk more here at home. The boys loved the rides (they both did the big kid rides like Tower of Terror and Thunder Mountain Train Ride....and Joshua even did the Rockin' Rollercoaster!) but yet enjoyed the simpler rides (that I could do!) and shows, they liked seeing the characters and getting their autographs and pictures. My sister Juli was able to drive from the West Palm area to spend 4 of the days with us and that was great time for her and the boys just to be auntie and nephew....and she loves rides so that gave Jason a break! They just loved being at the hotel and jumping on the beds and swimming and racing up the stairs or elevator. One of the highlights of our week was at Magic Kingdom when Jason, Joshua, Jonathan and I wore our "Official Fan of Jacob" shirts and everyone asked us about him. The boys had "cast members" ask about Jacob and we had people standing in lines wanting to know who Jacob was.....it was a "magical" day that we got to spend talking about our sweet heavenly boy. It was an exhausting week, but a memorable one that we are very thankful that we were able to do.

So there is a quick update on us....I apologize for it taking so long! Maybe I will get better....but with the weather being so great and my gardens blooming, I just love to be outside with my boys and not inside on the computer....you all can understand that! Just know we are well and I will keep you updated as much as I can. Love you all and miss you all!

Karen

We are here and will update soon!

I will be updating soon on all good things that have been going on....but we just got back from vacation and need a vacation! Just know that things are well here and we will be updating soon! Love you all. Karen

Yes, Jesus Loves Me

This past week has been pretty cool. It always amazes me how God not only sent His Son to the cross for me 2000+ years ago but He also sends little love reminders throughout my every day. It's not enough for Jesus that he gives me hugs and kisses from my two older boys and allows me to relish in their successes throughout their every single day......it's not enough for Him to give me yet another beautiful child who I get to feel dance in my tummy.......He goes incorporates our precious Jacob's life in our everyday, not just in our hearts but in the hearts of others. God knows this is a source of encouragement to me and it reminds me how much He cares for me and my family. Here are some examples of how God is still using the life of our sweet boy:

*About a month ago, Jason was asked to speak at a new church plant about 60 miles away from our home. He was asked to speak on the topic of suffering. This past Sunday was when he taught. Now, Jason is a bright guy, wise, talented (I am biased) but his gift of teaching is one from God. I cannot find the words the explain what it means as a wife and mother to see my husband before a group, teaching God's Word that has been so profound in our lives this past year, and using my son's life as an example on so many levels. There are not many daddies who talk too openly about the passing of their child in public or in the home. So to see him up there, tears is his eyes, speaking the Word and words God wanted him to share....uuuhhhh...cool (understatement). I know it was meant for that church to hear and they applied it, but for me sitting in the front row, as his wife and mama to the baby who God used to teach him those things, it was a proud moment.....a treasured one. One that blessed my heart to witness and is a gift a wife and mother will cherish forever. How do I know Jesus loves me? Because He gave me a gifted husband who loves his family and wants to touch others with the life of his family's suffering.... an amazing daddy to all his boys here on earth and in heaven.

*God also used that evening at that church to allow me to embrace yet another mother in sorrow. I had communicated through email and phone with a mother of a sweet baby boy who passed from Trisomy 13 last year. The church we were at was literally down the street from her and she came on out and we met face-to-face for the first time. She sat next to me as we listened to Jason speak. What a support to me to have another person there who I knew felt exactly what Jason was talking about! Any time I get to hug another mama of a baby in Jesus' arms, I just get the chills.....it is amazing how little you know about someone but yet this one thing we have in common (the loss of a child) can make us feel connected like nothing else can. It truly was such a blessing. How do I know Jesus loves me? Because he gives me opportunities to embrace other mamas and allows our sorrow to be of encouragement to one another.


*Tuesday, as I sat at my boys gymnastics class, I was talking with some other mothers about art curriculum. I shared how the boys have been having art lessons at home for the past year as a service a company provided because of Jacob. There was a mother there who I met for the first time this week and she asked about Jacob's story. She asked me what he passed from so I told her Trisomy 18. Usually, when using this term, I have to further explain what that is but she looked at me and told me that her 4th child (she had 6) passed of Trisomy 18 10 years ago. Talk about an instant bond. She was so interested in the connections I have made through the blog and the support we have received from all other the world. She shared some of the opportunities she has had to minister to others with her son's life over the past 10 years. She commented on how the interent was just not something you used for those purposes when she lost her son 10 years ago. God placed yet another mother here in my home town for me to hug and "get it". How do I know Jesus loves me? Because He gave me yet another mama who "gets it" and has traveled this road and has a beautiful story that touches lives 10 years down the road.

*Thursday I get an email from my "Atlanta Girls" informing me that Beth Moore wrote about our encounter with her in Atlanta in her newest Bible study Esther. Um, wow! As if that weekend could mean anymore??? Here is what sweet Beth writes about our short yet meaningful time together:

"Our purposeful God allowed this final week of Esther to follow a ministry event that reminded me afresh what a beautiful thing women studying together can be. Amanda told me a group of eight young women who'd been communicating online were meeting at the event and spending the weekend together. She knew I'd want to meet them. They have a deep bond none of us would hope to share. Each has buried a cherished infant in the last year. They met through a ministry blog and bonded not only in their loss but in their profound determination to glorify God through their enveloping grief.
They were about my own daughters' age, and I could have held and rocked each one back and forth for a solid hour. Many of them entrusted me with pictures of their darling ones who are now safely and vivaciously in the playful, nurturing hands of Jesus. Those pictures are to my left now as I peck away at the computer. I asked them what they'd have me pray over them, then invited them to their knees so I could lay hands on them and intercede.
How blessed we are to be women. By nature we like to do things together. Work and play. Laugh and grieve. Eat and pray. Live and die. A large measure of enjoying womanhood is enjoying a heart connection with other women."

Now, God took a weekend that I thought couldn't get any more perfect and he made it more perfect! He took my son's story, touched the lives of these 8 women and the world, who then touched the life of Beth, who so devotedly writes and touches the lives of so many others around the world! He just didn't have to do that. How do I know Jesus loves me? Because he encourages me that my son's story is being told by thousands to thousands. He gives me a glimpse of what amazing things He can do with a tiny boy I am honored to mother.

*Friday, we had our 18 week ultrasound for Baby Fahmer #4. I climbed onto the exact same table that I was on when gazing at Jacob's heart and having mine sink with motherly concern. The technicians were courteous of our experience with Jacob yet not overly cautious and dramatic....she was great. We stared at the TV monitor as it illuminated the amazing creation that danced in my tummy. We saw our baby drink, dance, wave, jump.....we gazed as the heart beat at 140+ beats per minute and 4 perfect chambers.....we saw tiny feet and toes dance across the screen.....we saw tiny ribs, arms and leg bones.....we saw a developing brain, stomach, kidneys...we saw facial features with a perfect nose.......we saw BOY parts and clear as day! Yes, Baby Boy #4 :) How do I know Jesus loves me? Because even though we are not guaranteed another moment with this tiny baby boy, God gave us those moments to gaze upon His miraculous creation that is housed inside my body and draws nourishment and strength from my body.

God has done so much for me, but this is just a glimpse of the goodness He shed on a heart that is mending. I know Jesus loves me because of the tiny things He just didn't have to do, yet did to say to me "I do love you."

"I love you too, Jesus. Thank you."

Fighting Drama

So, in talking to some mothers who have lost a child, I found that I tend to refer to this Baby #4 as "the child after"....just meaning a child after a loss. My tendency to get wrapped up in drama comes out more than I like. I am not a person who enjoys drama....ask my dear friend Kelly who's jaw hits the floor when I get straight to the point on things just to avoid what I categorize as drama. Anything that is unresolvable yet repeatedly brought up, anything that has a solution yet the solution is avoided to continue to wallow, anything that requires tiptoeing around the point causing time to be wasted, anything that most likely won't happen yet is openly and emotionally fretted, and I am sure I can think of others but my list would be quite dramatic then, wouldn't it? So why do I find myself falling into these dramatic feelings? Because that is just what Satan wants. He wants me to waste my precious time meddling over things that I can not possible know, he wants me to avoid bathing things in prayer because he doesn't want me to trust the Lord, he wants me to get caught up in dr appointments and testing so that my trust no longer rides on the back of the Creator but rather on the results from test tubes and technicians. Since finding Jacob's heart condition, beginning his blog, and his experiencing his death, my eyes have been opened to so many sicknesses, genetic "disorders", diseases, "malformations." So what has happened? In my moments of weakness, I have allowed my knowledge of what is out there influence my thoughts in a way that is unproductive. I allow "drama" to creep in. I see where others have difficulties in carrying their "babies after" and I think that I should have those same difficulties....drama. God has always protected me from certain difficult moments that happen after a child is lost....like seeing that mother playing with her baby when I cannot hold mine, like seeing those 3 boys when I am allowed to gaze on two out of three.....I see how they could be difficult moments, but God has given me a very special peace and allowed me not to struggle with these moments....thank you Jesus! But now, the past is not a struggle, but rather the future. I find myself seeing a mama ready to pop out a baby and I just hope to get there with Baby Fahmer #4.....why? I have never lost a single child before birth! I find myself being funny about going to the hospital where Jacob was born.....why? With God's strength I've been back there, went into the very room I stayed in the ICN, and gazed upon yet another precious baby with Trisomy 18! I find myself nervously anticipating the 18 week ultrasound.....why? I had no issues with a single pregnancy until I was 6 months with Jacob! I do not want to be paralyzed by moments that resemble my darkest days....instead of being paralyzed, I want to see how God has molded me through those times and made me who I am today. The facts remain: I was at that hospital when I found out what difficulties lie ahead for my son, my son died in my home on this couch, I sat in my parent's van as I received the news of my son's death, I kissed his sweet face for the last time standing in my driveway. Those are the most difficult moments I have ever encountered. But does that mean we find a different hospital, move from our home, burn our couch, never ride in my parents van again and never play hockey and basketball in our driveway? No! I will not allow those days to cause panic and discontentment in the present. God did not give me those moments at those places so I can be haunted, anxious, and struggle.....those are NOT things of the Lord. Do I think of those moments and days and wonder what in the world happened? Yes. Do I allow them to dictate my current actions out of fear? No. I will avoid the unproductive drama that I so easily slip into, and I will take what I have learned and be productive for the furthering of the Kingdom of God. It is a struggle at times.....memories of my sweet boy are all I have...the good and the tough....and I will not allow Satan to take a single one from me and use it to against us in the present. God gets this victory.

Be an Encouragment!

Hi All! My sister's friend Alana (yes, this is my sister's real life friend) is on a mission to send encouragement to a fighting child. Please read the email I received and act....here is a real chance to make a difference to a fighting young child. Get involved, get your kids and family involved, get everyone involved and make a difference.

"Hey everyone (literally!) My friend Kristy's son Conner is nine years old and recently found out he is having a recurrence of cancer. This time there are numerous spots on his spine, and treatment will be intense. I talked with Kristy this morning and she has requested we help encourage her little boy who is battling cancer for the second time in two years. Please pray and ask God to give you a scripture verse that would encourage Conner and his family. Write it down (do not e-mail it) on an index card or colorful piece of tag board and mail it directly to Conner at the following address:

Conner Newcomb
35 Hobbes Lane
Rochester, NY 14624

PS: Kristy said she would love THOUSANDS of verses to decorate his walls, so don't hesitate to send one (or more) along!
This is NOT a hoax or a chain letter. It is my [Alana (Helfrich) Brown's] real life friend, whose real life son is facing this illness in Rochester, NY. If you are not familiar with the bible, you can visit http://www.biblegateway.com/ and do a word search about comfort, healing, etc; and see what you find! I know God is faithful and will help you help Conner!!! PASS THIS ALONG TO ANYONE WHO WOULD HELP!"

Please pray for Conner and encourage him by sending God's Words to him! Thank you!

Karen

Been A While & Lots Is Happening

Well hello there....if there is anyone still out there!!! I know it has been a while since we have updated. Lots going on in my head, but not a whole lot coming out of it!

Jacob's birthday was a lot for me.....very strange day where I felt very lost in how to celebrate the birthday of someone no longer with us. But as Jason asked for the Lord's blessing on our meal and day, I was reminded that it was a celebration of the day the Lord grabbed hold of hearts and used such a precious instrument to further His purpose. January 14th 2008 the Lord graced me with the most precious gift he has given me since His salvation.....He allowed me to hold a piece of heaven for 138 consecutive days and that very first day, the very first moment of Jacob's life outside the womb that began a journey that changed me and so many others forever...that instrument of God was born in January last year and was celebrated this year. And everyday since then has been impacted by the sweetest baby boy this world could know. All to the glory of God.

These days have been harder. February 14th of last year, I snuggled my baby boy in celebration for him beating the odds on his one month birthday. He will always be my Valentine forever stealing my heart. I will forever remember holding him, breathing him in, rubbing noses with him, and him showing his love for his mama as we wore red and celebrated with exchanging Valentines and singing Happy Birthday. I guess I have a difficult time explaining why these yearly holidays that were celebrated with Jacob last year cause me to have a knot in my stomach this year. I am not sure if it the disbelief that an entire year has gone by or the sadness of not celebrating with all three of my sweet boys.....it's still tough to sort and articulate it all. All I know is that I miss my youngest boy. I miss him more than I ever have. I have cried for him harder than I have since the night of his passing. His squeaks. His smell. His breath. His soft hair. His presence gave me such a grip on the things that matter in life.....he made doing God's work so easy (for lack of better term). And all these things I have in me forever but for them not to be tangible.....it hurts. For me not to be able to gaze into those strong blue eyes and actually see the value of time.....the world creeps in and I get lost in the day to day. I haven't forgotten, but what I am saying is it was much easier to remember what matters most when Jacob was here in my home, in my arms. I treasure my days with Joshua and Jonathan more than I ever have and I am thankful for their blue eyes I get to gaze into to remind me of the things that really matter and how to value time as their mama. They are such gifts.....and I know they are on loan just like Jacob was and that makes me act on things now and not wait until later....we just never know if later will come.

Joshua and Jonathan are such proud big brothers.....they talk of Jacob all the time reminiscing on the times we had with him here and how he is forever in our hearts. They and Jacob are big brothers to Baby Fahmer #4 who has taken up residence in my womb for the last 14 + weeks. They are very excited.....as much as their reality allows them to be. They have hope to be able to "keep this one" but yet they know that not every baby was not meant to grow old here. They preface their conversation about the baby with "if we get to keep this one" or "if this one lives" but then they proceed to share their hopes of summer time fun and days filled with loving on yet another sibling. They hope, yet understand we are not promised to hold another life. They are such big boys who have learned such huge lessons.....they have learned so much about life and know so much for a 6 and 4 year old. Their spirits are stunning and the refining continues, I know, but it is just amazing to me their grasp on it all. Children are a blessing.

So how am I with this all.....this will be a continuing topic....for the next 25 weeks! Pregnancy life is very different this time around....the realities of loss linger and the excitement mingles but it is all low key.....not like our previous pregnancies at all..... there are things that would have been discussed way before now that we "just aren't there yet" with this new one. Emotions are tough....grieving a loss mixed in with carrying new life is very hard to say the least. I have made it very clear that this is not the 3rd child redone.....this is our 4th....a separate creation, a separate soul, a separate journey, a separate story all wound into the Fahmer Family. This little one's story began 14+ weeks ago and every moment I get to mother them, outside or inside the womb is a moment that was gifted to me by God. Understanding that this baby is not Jacob redone is very clear but the lessons from his life and realities of never being promised another moment are just lessons you do not take for granted. It's not fear; it's our reality. There is no replacement for Jacob. I have held other tiny 4 pound babies and gazed upon another Trisomy 18 child and felt nothing similar to holding my Jacob Ryan....I have tried to simulate him in my desperate moments....it cannot be done....his body is laid to rest and his spirit lives forever with Jesus. Many of you may say that that is all without saying but I have spoken to mothers who's babies after a loss are their redeeming children....this baby does not carry any more weight on them because of their big brother.

Their big brother Jacob gave them more love already than any child could ask for.....Jacob was used to change us to love more and this baby will hopefully be welcomed into a home embellished with love. Joshua and Jonathan have loved this little one so much since the day they found out about them and I know they love more than before because of all they have learned.

So this conversation will continue for some time.....but for now, I must get off to bed. Thank you for loving us. God Bless.

1 Year Birthday Memorial Celebration

Sorry it took a week to get you all pictures from our 1st birthday party for Jacob! Some sweet friends remembered us and sent flowers and gifts. Karen said that all the phone calls and deliveries to the house reminded her of the time we had with Jacob... never a dull moment!
Of course we had to have a cake! It of course had Jacob's favorite color yellow on it. On the way to the store to get the cake our car got stuck in the snow and a yellow jeep pulled up and helped push us out! I think God sent that "Angel" just to remind us that He hasn't forgotten us!

We all wrote messages to Jacob on small slips of paper and tied them to balloons to "send them up to him." Here's a pic of Jonathan's message to Jacob:

It was well below zero outside so we had to bundle up and quickly release our messages to the skies!

He Celebrated 20+ Earthly Birthdays...

Every Monday or 14th of his life here with us, we had some kind of birthday recognition for Jacob. We knew he wasn't made to have very many years so we celebrated his weeks and months with parties.....some of the weekly (every Monday) and monthly (every 14th) celebration videos are on the side bar but here are some pictures of him on those celebration days or days that we just celebrated. Towards the end, days were difficult for Jacob so our celebrations were a little less glitzy, but he was still with us and we still celebrated....as we pleaded with him to hang in there! But anyways....enjoy seeing how big he got and how we just enjoyed our sweet boy on his "birthdays".

"We miss celebrating with you sweet boy! We will do our best today here.....have a great day with your Creator and all your other sweet friends He has called home. Oh, how we miss you. Your light will never blow out here. We love you sweet boy and miss you. Love, Mama, Daddy, Joshua, Jonathan & all your other earthly family and friends"

She Went Home Today

Please pray for Magdalena Grace Robert's family. Magdalena went to be with the Lord today after 5 months and one week of living one of the most lovely lives I have ever followed. I have been able to minister to Magdalena's mother Julie through some of the things we went through with Jacob and the Roberts have been such a blessing to watch on this T18 journey.....it now continues with their loss. Please visit her blog and read back through to meet this sweet girl and to be able to pray for her family more specifically. http://noahandjulieroberts.blogspot.com/

It just tears me up.....she fought and grew and we hoped.....but she will be at a big birthday party celebration tomorrow......for Jacob Ryan's & Mary Grace's (http://marygracesummons.blogspot.com/) one year birthdays as well as celebrating her new life with Jesus.

Approached By Jacob Fans

I thought a moment like this would happen sometime but I didn't know what it would be like. Tonight my family gathered at my parents house. I went to a local restaurant pick up alone to get our food and as I stood in line a sweet young woman asked if I was Karen. I told her yes and looked at her struggling to place her as if I should know her. She told me that I didn't know her but that her and her mother, who was there with her as well as her sweet daughter, followed this blog of Jacob Ryan's sweet life and was told of the blog through a friend of my family. Now, there is this special feeling of motherly pride that comes only to us mamas of babies in Jesus' arms.....our babies will never win the little league championship, win first prize at the science fair, graduate with honors from high school and college, marry a godly spouse or raise children in the Lord.....but our babies have left their tiny footprints on hearts for eternity and these moments of hearing and seeing what out babies have done are our championships and graduations. That's all I have....and therefore I have it all. So when this sweet group of three generations approached me and wished me and my family well this week as we celebrate Jacob's birthday, I held back tears. On my drive home I just couldn't stop smiling. I just was so proud of my boy.....I cannot tell him how this made me feel but he was told "Well done" when he got to his eternal home and there is nothing that could please me, his mama, more. So thank you Gail, Natalie & Tessa for approaching me and allowing me to see Jacob's championship moment. And thank you Mrs.H for sharing this blog with those you know....it means more to me than you could possibly know. Thank you to all our fans out there for your continued encouragement and love. This year has been such a work of the Lord and you have all played such a huge part in it. Thank you.

Jacob is the only Champion that Buffalo team will ever see! :)

Before the Blog Part IV

So this is probably the last "Before the Blog" post since this is actually leading into when "Jacob" started blogging.

The rest of our hospital days kind of blend but they were great days spent with Jacob....we embraced his diagnosis fastened our seat belts for the journey we were on. We had to wait a couple more days before we got the official diagnosis and during those days, we did tell family of his likely condition. So many people came to the hospital it was really something.

I didn't stay in my room very much at all....I would go and visit him and fall asleep down there, many times with my head next to his cooking on the warming bed. I remember spending one night up in my room and the nurses got Jason a pull out to stay with me......I cried like I had never cried before....I wept in disbelief of the events that were happening....I sobbed in shear physical and emotional pain.....poor Jason didn't know what to do because he knew I needed to cry because I was just so broken but then he was concerned about the fact that I just had surgery and I was in so much pain....I hurt everywhere.....my heart, my tummy...everything was broken....one of those moments when it all comes crashing down.

Jacob continued to do well. He was decreased on his IVs and began feeding on fortified breast milk via the OG (feeding tube) and increased well. He stayed on the warming bed for a few days....Jacob was moved to a different bed (I forget what they called it but it had it's own thermostat so that he would begin learning to maintain his temperature). He remained on the monitors. The ICN hospital staff gave Jacob a separate room so that we could have as many visitors as we wanted without it being a problem as well as Joshua and Jonathan in there who were not allowed.....shhhh don't tell. Jacob was eventually in a crib in room air, room temperature where he did fine maintaining his temp. Dr.R came in spent time with us, nurses were amazing, Jacob's lead neonatolgist was phenomenal on so many levels, and my parents cared for Joshua and Jonathan (what a blessing!) while I stayed at the hospital and Jason came is as much as he could.

Before the official diagnosis we stopped all conversations with the doctors about how to treat him.....we just took one day at a time and did what we could that day. Thursday the 17th was the day we were to get the test back. The A.M. came and went and then we were well into the P.M. when the doctor came in and told us the Trisomy 18 was his condition. We talked about the possibility of bringing him home. A nurse said to me "If all he has is a feeding tube, you can learn how to do it and take him home." I thought about that for a few days.

I was still a patient myself at the hospital so I had a room to stay in and they kept me as long as they could and then Friday evening they discharged me. I went home to sleep that night....I stayed up late staring in Jacob's room wondering if he would ever stay in it and then I woke early in the morning panicked, called his nurse who said he was great and had a fun makeover evening and I just felt like I had to to get back to the hospital....my mother called and told me she was on her way to the hospital so I knew he wouldn't be alone.....my sister got me back there as soon as she could and I didn't leave again until Jacob was brought home.

Once back at the hospital on Saturday, I began Jacob boot camp. I learned the ins & outs of his care.....I learned about the syringes, the feeding tubes, placement, measuring how much of the tube to put in, residuals, got our own stethoscope, calculating cc's, fortifying breast milk, gravity feeding him.....I took over care of Jacob as much as I could but under the supervision of the nurses. I did have one nurse who made me skip the 3 A.M. feeding so I could sleep (thank you Amy!) but I did what I had to do every 3 hours.....plus, as a nursing/pumping mother, I was up anyways! By Monday, I had changed his tube a couple times and done the feedings around the clock. They were confident in Jacob's care and ready to get him home.....plus, they told us that if we are fearful of caring for him at all, to call or bring him back and we could take it from there. We had the home nursing all set up incase we needed it and we waited for discharge. We did what we had to do to bring him home and give him the best possible life we knew how.....with each child, you have to adjust your life and although Jacob came home with bells and tubes, it was what we had to do as his family to care and love him....it was a privilege.

They discharged Jacob Monday evening about 5:00 P.M. and the hour long drive in a ridiculous snowstorm during rush hour finally brought us to our home where Jacob celebrated his first week birthday and then spent his remaining 131 days. The rest of the story is the blog so reminisce through the old posts as we approach his first birthday on the 14th.....2 days away.

Please feel free to ask any questions....you can email us at babyjacobryan@gmail.com. The blog is written from Jacob's perspective and therefore my perspective as a mother being his at home nurse or Jason's as a father and head of a very special household is hidden behind Jacob.....so if you have any questions about Jacob, his story, his care, his doctors, our feelings....anything, please know that it is our honor to minister through Jacob's life and we are an open book. Thanks. God Bless.

Before the Blog Part III

January 15th. I woke up after a night of being drugged and sleeping very well. I had spent some time with Jacob before heading off to bed and once I woke up, I walked behind the wheel chair down to the ICN to see him and visit him again. Jacob was super responsive to Jason's voice the night before so when I was there, he just slept and didn't move about....when Jason was there, he opened his eyes and looked for him and put on a show....typical....I carry him for 9 months and then Daddy gets all the attention! :) I had a great morning checking on my sweet boy who was doing well.....he was on IVs with just sugar water to keep him hydrated, he was breathing room air and hanging out in the warming bed. His O2 levels were low but that was to be expected with his known heart condition. We had a few visitors and my mom came up to see him. A resident geneticist came in as planned to do an analysis to clear Jacob for his surgery. I watched him do all his measurements very quietly and since this was the first contact I had with this doctor, I had difficulty reading his responses to his measurements....he repeated a few and then came the attending geneticist, the attending neonatologist and the residents. They asked my mother to leave because the only ones allowed present during rounds were the doctors and the parents. My mother went to wait in the waiting room. The doctors all gathered around, the attending geneticist, we'll call him Dr. R, who took one look at Jacob, turned to the other doctors with his back towards me and said, "Ok, we have a Trisomy 18 case here." The look on my face must have been something because EVERY doctor that could see my face realized that that was the very first time this diagnosis was mentioned for my son. I stood up, went to my son's side, had the residents dismissed and told everyone that I didn't want to talk about a thing until my husband was there. They all scattered and realized what had happened....a mother's heart was devastated and they witnessed the very moment of brokenness. You see, Jacob's cardiologist had "greatly encouraged" us to get an amnio at 6 months in the womb and his reasoning was because if he told us for 3 months he could fix our boy and then he couldn't due to a genetic disorder we would be devastated......I quickly intently stared into his eyes and rebuttaled "No matter when you tell me you cannot fix my son, if it be now with an amnio or after his birth, I will be devastated." And what those doctors witnessed was not a mother's devastation of realizing her son cannot be fixed after being told he would be, but rather the devastation of knowing that her son will die soon and was not made fixable. This was no different than it would have been 3 months prior. They gave me the phone and I called Jason. He had just arrived at my parent's house to see the boys and my dad ran to the store to get something. I told Jason to "just come to the hospital." He asked if he could wait until my dad got home and I told him to pack up the boys and my mom will watch them here but he had to get there now. He packed up the boys and got there quickly. My mom stayed with the boys in the waiting room and Jason came with me to Jacob's bed side, he asked what was going on. I told him that they are saying it is Trisomy 18. I then witnessed the brokenness of a father realizing he was going to lose his son....Jason's head tuned to the side, he went to Jacob's side and said "Oh buddy." I am not sure what happened right after this.....it is a blur. At one point Dr. R and his resident and a nurse came into a family room with us and we talked about what the observations were that led to this diagnosis and what to expect of it. We cried....all 5 of us and we all prayed....Dr.R is a christian. I told Dr.R that we are going to proceed as if he was wrong until the actual test came back and then we would decide what to do. We didn't know what to tell Jacob's big brothers.....oh how they prayed for their little brother to be well and how they were so excited to have him.....and now, to tell them that we didn't know how long he would be with us......and to sit with Jason and see his brokenness....it hurt so bad.....it still does. The ICN pulled some strings for us and Jacob was put in a portable crib with portable monitors. I called my father to let him know what was going on and that if he wanted to meet Jacob, he should come up to the hospital. They brought Jacob into the private family room to meet and be held and loved on by Joshua, Jonathan, my mom and dad and me and Jason. We spent quite a bit of time together.....it was so strange looking at Jacob and realizing we didn't get to keep him....it just was so frustrating as a parent....he was so perfect and so sweet but we wasn't made fixable. We told the boys that we didn't know how much time we would have with Jacob and to kiss him and love him as much as they could now because he was made so special that God was going to take him back and he probably wouldn't grow up with them and all these things and I cannot believe we had to tell them....it hurts so much now just thinking about what we had to do. uh....

Just what I needed...

You know how God just places certain things in your life with perfect timing? A friend of mine sent this link to me and she was used by God in a great way just by obeying the Lord's Spirit.....listen to the Holy Spirit because it goes father than you will ever know.

Check out this youtube video and song...you need like 9 minutes and it is worth it! The lyrics are below too:

http://www.youtube.com/watch?v=ZE33ejdgWIY

Verse 1:
This is my prayer in the desert
When all that's within me feels dry
This is my prayer in my hunger and need
My God is the God who provides

Verse 2:
And this is my prayer in the fire
In weakness or trial or pain
There is a faith proved
Of more worth than gold
So refine me Lord through the flames

Chorus:
And I will bring praise
I will bring praise
No weapon formed against me shall remain

I will rejoice
I will declare
God is my victory and
He is here

Verse 3:
And this is my prayer in the battle
When triumph is still on it's way
I am a conqueror and co-heir with Christ
So firm on His promise I'll stand

Bridge:
All of my life
In every season
You are still God
I have a reason to sing
I have a reason to worship

Verse 4:
This is my prayer in the harvest
When favor and providence flow
I know I'm filled to be emptied again
The seed I've received I will sow

Thank you Shannon!

With Christ on Christmas

Onset of Emotions

Well, I was doing good for a while there with the "Before the Blog" posts and such but I have come to a stand still. January 15th, 2008 was such a ridiculous day and I just haven't been able to get the words organized to relay it all. I have also stumbled upon some emotions that have a difficult onset especially around the holidays. When people ask "How are you doing?" man is that a loaded question....and I am not one to lie but there are those who are actually asking it and then there are those who just would rather hear a lie and go on with things. So for those who don't want to hear the real answer, stop reading.

I miss my son. I miss him more than I have ever before. The 14th of a month hurt badly for the first time. I got a 1st birthday party planner in the mail last week..... a month ago, that wouldn't have hurt.....this month it did. Not because I want a baby to celebrate his first Christmas and birthday.....but because I miss my son Jacob who "would have" been or had...

Happy Holidays, Merry Christmas....easier said than done. Am I a Grinch?....no. I know what Christmas is all about....and Jacob will be in the presence of the One most of us strive to celebrate......and my earthly flesh cannot get past the fact that my arms are not holding my baby boy and it cannot even fathom the One who is......so I struggle. It's what God made me to be..... a mother. It's what God has given and taken from me. And in this, He has given me so much more than I could have possibly even thought to ask Him for......but this process has it's growing pains....and I am in a growth spurt. I don't have time to pretend to be cheery mrs. clause and bring all the children and family and friends great happy Christmas cheer when deep down, I hurt. I can see, now more than ever, how people hide away because the expectation to be happy and celebrate with chocolates and cookies makes people nauseated who have this hurt. Do I have joy?....I sure do.....in the things that matter.....not in presents, chocolates & cookies.....my joy is in the things of the Lord and what He has made me as His child.....and the path He has me on is not all cheery and happy....it just isn't.

So this grief I have has it's tendencies: I want to be with my boys and stare into their smiling faces as much as I can and spend as much time with my amazing loving husband as I can. I want to surround myself with comforting people....not forced hugs from people who don't have a clue where I am at. I want to surround myself with joy.....not false happiness from presents bought at a department store. I want to be encouraged in faith.......not just some story about some big fat guy who comes in a red suit. I want to be around those who miss my son......not because they just know his name, but because they experienced him and they truly know who he was and is and acknowledge his impact on this world.

So, I will get back to "Before the Blog".....I have those days spinning in my head all the time and they will get to the blog. I am just trying to get through these days....one step in front of the other....one at a time.

"...my earthly flesh cannot get past the fact that my arms are not holding my baby boy and it cannot even fathom the One who is."

Where does thankfulness come from?

1 Chronicles 29:13:Now, our God, we give you thanks, and praise your glorious name.

I sat with my boys and we talked about some things that we are all so thankful for. The three of us listed some things, all very important, but every single one revolved around something we were given. As I read the verse above, I wanted to know the context of it (always read scripture in context!...I quoted it below so go ahead and read it yourself). David and the leaders of the tribes of Israel had just GIVEN to the Lord for the furthering of His ministry. Say what?!??! They were thanking God, not only because of what He had given to them, but because of their ability to GIVE! So, I am going to jump to an assumption - If they had not given, they would not have been thankful.

Sit and think about things you are thankful for. Why are you thankful for those things? Is it all because you were given something? What if you haven't been given much? Maybe you had things taken from you....how can you be thankful for that? Thankfulness in these verses came from a heart of "willingly contributing." They were ecstatic to GIVE. I must admit....because of my son being "taken" from me, I am having a hard time being thankful for the hurt I feel. But giving to others by ministering through Jacob's life has made my soul dance with joy! The feeling of giving to others is unmatchable....it is from the Lord.....it is a gift to give. I have never felt regret after giving....in contrary, the feeling that giving results in encourages me to do it more often. But after reading these verses, I realized that I relish the feelings giving brings but I do not turn to the Lord and praise Him for it....I just eat it up and keep it to myself....honestly, I have never uttered anything comparable to what David praised after he and his people gave. I need to do that...I want to do that.

Giving brings about thankfulness....if you do struggle to be thankful, give....give freely because everything comes from the Lord. Take your eyes off of you, give to others, and then praise God for his goodness, dance for joy and "praise His glorious name!"

Christmas is right around the corner, and we all get in the spirit to give then, but this giving 1 Chronicles is talking about is a lifestyle thing, a spiritual thing, a God thing.....not just a season. We should have a heart of thankfulness all the time which means we should be giving all the time. So many of you have given to us with time, talents, thoughts, prayers, finances, encouragement....I have thanked God for that, but have you thanked Him for doing that for us? Does it make your heart sing for joy that you have touched our lives? Be touched. Sing. Praise His name for the ability to contribute to the Fahmer's and then give again and again and again to more and more families as a result of your thankfulness to be able to give.

Tomorrow, when I sit with my boys, on our Nation's Thanksgiving day, I will be sure to rephrase my question. Instead of asking what we have that we are thankful for, I will ask what they have willingly contributed that brings about thankfulness in their heart. And then I pray we can pray the words of David.

Happy Thanksgiving!

1 Chronicles 29:1-18 King David then said to the whole assembly: "My son Solomon, whom alone God has chosen, is still young and immature; the work, however, is great, for this castle is not intended for man, but for the LORD God. For this reason I have stored up for the house of my God, as far as I was able, gold for what will be made of gold, silver for what will be made of silver, bronze for what will be made of bronze, iron for what will be made of iron, wood for what will be made of wood, onyx stones and settings for them, carnelian and mosaic stones, every other kind of precious stone, and great quantities of marble. But now, because of the delight I take in the house of my God, in addition to all that I stored up for the holy house, I give to the house of my God my personal fortune in gold and silver: three thousand talents of Ophir gold, and seven thousand talents of refined silver, for overlaying the walls of the rooms, for the various utensils to be made of gold and silver, and for every work that is to be done by artisans. Now, who else is willing to contribute generously this day to the LORD?" Then the heads of the families, the leaders of the tribes of Israel, the commanders of thousands and of hundreds, and the overseers of the king's affairs came forward willingly and contributed for the service of the house of God five thousand talents and ten thousand darics of gold, ten thousand talents of silver, eighteen thousand talents of bronze, and one hundred thousand talents of iron. Those who had precious stones gave them into the keeping of Jehiel the Gershonite for the treasury of the house of the LORD. The people rejoiced over these free-will offerings, which had been contributed to the LORD wholeheartedly. King David also rejoiced greatly. Then David blessed the LORD in the presence of the whole assembly, praying in these words: "Blessed may you be, O LORD, God of Israel our father, from eternity to eternity. Yours, O LORD, are grandeur and power, majesty, splendor, and glory. For all in heaven and on earth is yours; yours, O LORD, is the sovereignty; you are exalted as head over all. Riches and honor are from you, and you have dominion over all. In your hand are power and might; it is yours to give grandeur and strength to all. Therefore, our God, we give you thanks and we praise the majesty of your name. But who am I, and who are my people, that we should have the means to contribute so freely? For everything is from you, and we only give you what we have received from you. For we stand before you as aliens: we are only your guests, like all our fathers. Our life on earth is like a shadow that does not abide. O LORD our God, all this wealth that we have brought together to build you a house in honor of your holy name comes from you and is entirely yours. I know, O my God, that you put hearts to the test and that you take pleasure in uprightness. With a sincere heart I have willingly given all these things, and now with joy I have seen your people here present also giving to you generously. O LORD, God of our fathers Abraham, Isaac, and Israel, keep such thoughts in the hearts and minds of your people forever, and direct their hearts toward you."

Before the Blog Part II

January 14th, we got to the hospital early, like 6:00am. A few hours later,they got us into a room. They hooked me up to a bunch of machines and Jacob showed no signs of going anywhere other than a soft cervix. We had some issue with resident suggestions as to how to proceed...I have a couple medical doctors in my family and I think this gives me a boldness to ask questions so I took some questions to the attending (who was another one of my amazing doctors) who took things over. But Jacob on the other hand, was putting on a show....he was responding VERY adversely to even the low dose of the induction meds. Now, we were on a deadline to deliver this baby....nothing set in stone, but it would have been nice if Jacob was delivered prior to 6pm due to the Dr's involved. At this time it was 4 pm and things were not looking good for a vaginal delivery any time soon. We tried the drugs again but Jacob's heart kept decelerating at such low doses....he just would not be able to take the stress of delivery. They came in and told us they were getting the surgical room ready for a c-section and they would be back soon to get me to prep for surgery. I was terrified. Jason tried to cheer me up and I did ok....until they wheeled me away from Jason to take me in that room....I lost it....a c-section scared me so bad...the thoughts of people trudging around my wide open body on a table while I lie wide awake behind a sheet....it gags me even now the thought of it all. They brought me in the surgical room. The lights were so bright. The clanging of the nurse tossing the instruments and metal pans. The needle penetrating my spine and sending shooting pains down the entire right side of my body. The counting of the medical instruments and rags as to not leave any behind inside of me. The nurse forcefully suggesting the anesthesiologist get her attending to stick me right. The drugs only taking effect on my left side. The waiting for the drugs to kick in on the right side. The poking with a pin that I could feel but should not have been feeling. The deciphering of pressure verses pain. I would not numb as quickly as they wanted me to. I could still feel it. Jason stayed close to me. The doctors on hold waiting for me to numb so that they could reach inside my womb and take my son from it. Finally, I was numb. They began. And although I could not feel the pain, I felt the tugging. I felt them inside of me. I sobbed the entire time. I am now. I was invaded. I didn't want it to be like this...I had to be ok so that I could be int the ICN with him and go to Rochester for his open heart surgery. I had to be ok. I hated every moment....every moment until I heard his cry. My son had been stripped from my womb and we cried together. I lay strapped to that bed, womb wide open on that table but the chaos melted away for that moment when I heard that cry. All I kept asking was "Is he blue?" He cried some more, Jason went over to meet him. Jacob was not blue. He breathed well. He did not circulate oxygen 100% but he did well. He was much much smaller than anticipated....he had been estimated to be just under 6 pounds while in the womb and he was actually 3 pounds 14 ounces. They wrapped him up and handed him to Jason. I met him. I kissed him. I already missed him! I kept thinking he was blue but they said he was ok. We had our pictures taken while they sewed me back together below that sheet. Jason and Jacob went down to the ICN while they took me to recovery. Jason stayed in the ICN for the next 4 hours and met his newest boy. I stayed in recovery that long. They didn't want me to be in a room on a floor that had babies on it....they were trying to get me onto a different floor so I hung out in recovery. Because we still did not know about the T18, things went as normal. I think back to this and I am shocked. There are so many who had just a few moments with their diagnosed T18 babies after birth and here I am in recovery drugged after surgery for 4 hours not being with my not-diagnosed T18 baby. The cardiologist and ICN fellow came in to tell me some news we just did not want to hear....Jason had already heard because he was there with Jacob while they were examining him. Jacob's heart was much more complicated than anticipated and they were not sure what they could do to fix it...the simplest surgery (as if any open heart surgery is simple) was out of the question and the second series of surgeries was more probable. I asked if the genetic testing was being done so he could have his surgery and it was ordered. I laid there and sobbed for my tiny baby boy who was broken and the anticipated surgeries that would have his tiny body opened on a table multiple times throughout his life to fix him. They took me to my room. I got out of bed and into a wheel chair to go and see my tiny baby boy. There he was in his open air bed. I looked him over. I melted. He was so sweet. He was so tiny. He was so strong. I looked at his feet and noticed they were a little different. I noticed he did not open his hands. I took note of it but it still did not alarm me. He was perfect. He was the sweetest baby I had every laid eyes on. I spent some time with him and then we both rested.



To be continued....

Before the blog Part I

Jacob's due date was January 21st. October 3rd, I went for an ultrasound at the hospital because our tech at our regular office could not get a clear visual of all 4 chambers of our "baby girl's" heart. I went alone because it was just to get a quick picture of the heart and that was it. I sat on the table with that jell on my belly and stared with amazement at the screens in front of me....the life that I was seeing on the screen...wow. I asked her to make sure it was a girl...she looked at me funny and said....those don't belong to a girl! I was very excited about officially finding out the sex. Then she told me about the cysts that were on his brain...we sat and stared at his hand movements to look for any other signs of other "disorders" but he moved everything fine. She too could not get the right picture of his heart. There was a bigger issue here. I was asked to wait in the waiting room while she called up the doctor to take a look at her finding. Jason was at home with the boys (he was getting ready for work and then my Dad was there to stay with the boys until I could get home) and so I called him and told him that he didn't have to worry about any father-daughter wedding day dances (which he was!)....I would get yet another mother-son dance. He said, "WhAt?!?!" and was very excited about our little boy. But then I told him the sex was not the focus. I told him that there was a reason they couldn't get the right picture of his heart....it was because his heart wasn't 'right'. He asked if I was ok, I was, I told him I would get the details and we would talk when he got home from work. I was brought back in the room. The tech called the high risk ob in to look at his heart, my world crashed. He was unofficially diagnosed with complex congenital heart disease. Here I was alone finding out that my worst fear had come true....at the time, an 'unhealthy' baby was my worst fear. The doctor spent some time with me. My trust in the Lord was very evident to him so when the option to terminate was brought up, it was phrased in such a way that he assumed my answer very respectfully and referred me to our baby boy's cardiologist. The tech and doctor left me in the room alone to set up the appointment and I wanted so badly to freak out....I could not believe I was living this (at the time) nightmare, I talked myself down, prayed, held it together and pushed forward totally relying on the Lord like never before. After the appointment, I got into me car, called my sister as I was driving...I realized this was a mistake as I totally broke down and sobbed for a moment but then had to get it together to drive. I did. I drove home just replaying in my mind all that had happened...when you are pregnant, you think about all the things that could happen but you never really thought they would....at least I didn't....I was shocked that it was all real. I got home and my dad was there with the boys. He asked if everything was ok. I just shook my head and with tear filled eyes I said, "No." I didn't know what to do. I remember sitting on the couch wanting to call Jason at work because here my sister knew, my dad knew but Jason didn't. But I didn't want to tell him over the phone while at work and it wouldn't change anything. So I waited. Jason came home that evening and I told him the news. I don't' remember much else of that night but we told the boys of the doctors findings. They were concerned for their baby brother. Because it was news to us that the baby was a boy after being a girl for 6 weeks, Joshua said, "We need to give him a name......I like Jacob." So I said, "I like that name...Jacob it is." This day marked the biggest day of my walk with the Lord second to salvation.....it was a freeing day.....freeing of all control.....it was the Lord's will.

October 5th, Jason and I met with the cardiologist. We went over all the details of Jacob's heart defects. We went through the surgeries that would be in his future. We were "strongly advised" to get an amnio. Jacob became a cardiac patient and surgical candidate with some of the greatest care I have ever witnessed. He had more eyes on him and and more doctors involved...they were all great and they all respected our decision to give Jacob to best possible care we could regardless of genetics. But we were presented with a dilemma. Without the amnio, they would have to wait 5 days after birth to get genetic testing back in order to do the surgery....this meant he had to be strong enough to survive those 5 days until testing came back. An amnio could not be done too late in the pregnancy because the cell reproduction they needed to test accurately needed to be taken prior to a certain date....we had a deadline to decide if we wanted it or not....could he wait those 5 days? We had a month to think about it.

In that month, I met with my new ob (Oh, she was the sweetest doctor...I think of her often as her heart was torn for us after the diagnosis). She went down the list of chromosomal defects linked to Jacob's symptoms...there were quite a few and we talked about characteristics in each one....T18 & T13 were the worst possible outcomes but there were so many others and without the amnio; he was treated as a normal baby with complex congenital heart disease. She offered the amnio, respectfully accepted my decline and then we took a look at Jacob on ultrasound. His cysts had become smaller as anticipated and he looked great aside from his heart. Again, we sat and watched his hands move, we looked at his sweet button nose to see any facial defects were present and he was cleared until next month. At our next visit, his cysts were gone and things looked ok. We had met our deadline to request the amnio and we declined. Our decision was greatly respected among all parties involved...to this day, I would not change this decision.

My appointments continued on a monthly basis but then Jacob's growth became of concern....he was very small and his body was measuring significantly small compared to his head and legs. December 23rd came and we were told to go to our appointment with our bags packed in case of an emergency delivery. I was torn up about the thought of him being so small, so weak and so early. I thought of spending Christmas in the hospital away from my 2 older ones at home. He was cleared again as he grew as he needed and we cleared the holiday ok.

December 28th I woke up at 6:00 am with contractions 5 minutes apart. Because we lived 45 minutes from the hospital, our doctor said that any signs of labor, get to the hospital because this baby had to be delivered in a controlled atmosphere with the right doctors....(I delivered Jonathan in 2 hours so they took this into account and they needed more time than that to get everything in place for Jacob.) They checked me in, told me to walk because I was in no way dilated. We walked ALL DAY. I had more doctors check on me.....it was crazy. My contractions were 3 minutes apart, nothing too bad. At 6 pm, they monitored me and saw the consistent contractions but since there was no progressing, they were going to release me. They left me on the monitor as the nurse went to get the papers together to let me go home. She came back with the papers for me to walk out the door and looked at the monitor which had tracked Jacob's heart beat and on multiple occasions while she was gone those last 15 minutes, he had an irregular heart beat showing great concern of distress at times. That got the release papers in the trash and us admitted. Jacob was under 36 weeks and they didn't want to induce unless they had to. Through the night, contractions got worse (I had to breath through some of them), they had me on an iv to hydrate me and they monitored us every moment. It was a long night....Jacob had everyone on their toes. He had 2 more major decelerations and we were warned at 6 a.m. that if he had one more, they were going to do a c-section. Well he heard that and within the hour, all contractions stopped and he was fine. They monitored him for another 2 hours and everything was as it should be.....except I was EXHAUSTED from laboring for 24 hours, peeing every 2 hours and not sleeping AT ALL! But I was still pregnant which was great.

The week of January 7th, I met with my ob and Jacob's cardiologist one last time before delivery and scheduled an induction (to keep things under control) January 14th and to schedule Jacob's open heart surgery for following week just in case he needed his surgery that soon. Jacob's conditions did not make him a candidate for a c-section....we could still go naturally as his complications were issues that would only effect him once he was breathing outside the womb. We were prepared for a few symptoms such as low circulation causing him to be blue....just things we needed to not be surprised by. We were all on the same page.

To be continued....

Before the Blog

I don't know why, but I think a lot about how we "met" you all after Jacob's birth and diagnosis. "Jacob" started his blog the day he was born and wrote what he observed. While I was in Atlanta at Deeper Still, I remember talking about the blog and one mom commented how there was this mystery behind our blog....it was written from an infants perspective which is different, it was written by either Jason or myself which some enjoyed trying to figure out who, there were events not told about because Jacob was not there or was not born to blog about it. So, for some reason (maybe a mother searching for some details about other T18 journeys, or someone who's baby was given an unfavorable diagnosis after birth, or maybe just to give some more clarity to our story, or just to help me grieve some of my darkest days) I feel like blogging about some events that took place that "Jacob" did not blog about. This will not be short so you may have to take this in shifts...I will be writing in parts.

An email from a Jacob Fan

Here's an email we received from one of Jacob's fans in California. It's good to see his legacy lives on in all of you as well as in us!

"Hello Karen and Jason! I believe this is the first time I have actually sent an e-mail to you. I could not let today go without saying a HUGE thank you. Today is my birthday, and when I woke up this morning, I thought to myself, 'how have I changed this year?' I answered that question to myself and the answer surrounded what little Jacob has done for me. He has made me a better mommy, he has made me notice the sky is a bit bluer, the grass is a bit greener, the San Francisco Bay outside our home is more beautiful. I am not sure what distinguishes Jacob (and your entire family) from others in blogland, I just know all of you have made my life different.
Thank you for a birthday present that you never knew you gave. I have had Jacob's "Fan" picture on my blog since you posted it months and months ago. I look at him every day and realize how wonderful the world really is.
Thank you again!"

Leroy Lessons

A loss may help others find things. Our loss has helped others all over the world find things like Jesus, God, a Creator, time to give an extra hug or kiss, time to just be a family, time to talk longer with a friend, time to take a picture or video, time to just stare into another human's eyes and just be thankful for another breath. With Jacob, I was in the midst of it all, finding so much for myself and for my family. But today we had a different experience on a much much smaller scale that gave me an opportunity to observe true lasting character from my boys without the huge emotional attachment to the situation.

Today began as the average day. I got up, got the boys breakfast as Jason slept a bit longer and I headed downstairs to begin our school day. Jason got up and headed outside whistling...that is odd. Jonathan came and informed me and Joshua that there was a dog! It was a beautiful young boxer. He was very friendly, obedient, sweet and well taken care of. To be cautious, the boys stayed at the door inside while Jason and I played with him a bit to feel him out and be as sure as we could that he was an ok dog for the boys to be around....he was so nice and sweet and very gentile with the boys. Knowing this dog just got himself into some trouble, we took appropriate measures to find his owners...we called the SPCA to see if anyone reported a missing dog, we called the town dog warden, we listened for neighbors who may be calling for him, we took him for a walk around the neighborhood to see if anyone recognized him. Nothing. So, the question came up...."Can we keep him?" I made sure the boys understood that he was not our dog....he belonged to another family and I asked them to think about how they would feel if they lost something and what they would want someone to do if they found it. They immediately took it all to heart. Joshua thought up making "Dog Found" signs to hang up around the neighborhood....I got on the computer to make them up, Joshua grabbed them from the printer, grabbed the tape from the drawer, climbed in the car and chose the stop signs to hang them on. He cared for the dog, as did Jonathan, by playing ball, laying in the grass with him, petting him, changing his water about 40 times, tying to get him to eat, giving him a treat, and sympathizing with him when he whined if we left him alone.....the boys named him just about everything in the book....Rusty, Boy, Max, Watch, Smiley, ....the list goes on.

Although there was a family who was panicked by their loss, their loss helped us find something.....more amazing qualities in our boys. Caution: blunt, seemingly insensitive statement to follow.....The very night Jacob died, as I was putting Joshua to bed he asked, "Can we get a dog now?" Please know that he in no way was replacing his love for his baby brother with a dog.....understand that this question came up well before Jacob was here and while Jacob was with us. But sympathizing with Jacob's time and care here, Joshua realized we had a lot going on and knew we just couldn't do it. But his heart still wanted a dog so he asked that night when to him it seemed as if life just got less hectic ....talk about tugging on heart strings! (smart boy!) But, we turned him down again (heartless, I know). So today, when that dog was in the yard Joshua told Jason that this was a dream come true...that it was a great day to have a dog......he appreciated what he had that moment knowing that it may be gone the next. We waited until about 4:30pm and then we decided to take the dog (named "Watch" at the time) on a walk to see if anyone recognized him yet. We walked to the stop sign (the boys laughed every time Watch lifted his leg to pee on some one's mailbox!) with no success. But on our way back a vehicle slowly approached us. The driver rolled down her window and said, "Is that Leroy?!??!?" Watch went nuts. His owners. My boys faces. He lived just a few houses down from us. The lady thanked us for caring for him, let us know they were so worried about him, and she asked some questions about our day. She had been worried all day about having to tell her little boy that his dog was missing. We introduced ourselves. Then out of the car came her little boy who was the same age as Jonathan. She introduced him. His name is Jacob. My boys were so honored to bring Leroy back to this 4 year old boy who shared the same name as their sweet baby brother. They got to bring another Jacob some joy.

When that vehicle approached me, I knew it was his owners. My heart sunk for my boys. But they just rejoiced....I couldn't believe it. Joshua's dream of a dog, so real, so tangible, but too short. Just like so many of our family, friends and fans can't understand how we can rejoice in our journey with Jacob. Today, in Joshua and Jonathan's hearts, they knew Leroy was not theirs to keep...although he was a dream come true, they knew he wasn't our's. They knew they were on borrowed time and they enjoyed every minute they had with him until they had to give him back to his owner. They understand and learned more about what happened with Jacob than I realize. Nine months ago, in Joshua and Jonathan's hearts, they knew Jacob was not theirs to keep. They knew they were on borrowed time and they enjoyed every minute they had with him until they had to give him back to his Maker. It has made them the boys they are today, appreciating every moment of joy they are given. I am a proud mama. Thank you Leroy for going for a neighborhood walk into our yard and spending the day with us. Thank you Jacob Ryan for being used to build true lasting character in your big brothers.

Jacob's Always With Us

We've made it a point to make sure to include Jacob in all our family things lately... actually it just comes naturally... the boys will never let us forget to include him! So here's some shots of how Jacob got involved in Grampa's birthday party at our house a couple of weeks ago and how he was remembered at Halloween. Each of the boys had a pumpkin to carve. Jacob's has his initials on it "JrF" - and he's represented by his bear and Jonathan wanted his little ducky to come in the picture too!

The boys had a great time carving their pumpkins and being reminded that this is what Jesus does to us. He reaches into us and pulls out the goopy nasty junk and replaces it with a light to shine in the darkness.

Jonathan was Spiderman, of course (again!), and Joshua was a skeleton because one of his favorite LEGO guys in all the world is the skeleton. That skeleton is also a reminder of a story Jesus told. You see, a friend in Delaware gave Joshua a tub of approximately 3,000,000,000,000,000 LEGO's (I may be understating that number) but there is only 1 skeleton who is made up of 5 parts which fall apart pretty easily. And just like the 1 sheep who goes astray, if one piece of "my skeleton" goes missing Joshua will leave the 3,000,000,000,000,000 and find the one. Even if it means sifting through all 3,000,000,000,000,000 to find that one leg to put that skeleton back together again!

Better Them Than Us

Innocent questions, intended for a simple answer: "You have a family of 4?" "How many kids do you have?" "What are your boy's names?"

How do you answer? There is this strange awkwardness that happens when you tell someone that your baby dies but it is almost harder when it comes up with these innocent questions. ....who do you protect?...and from what are you needing protection from?

Jonathan is notorious for bombarding new visitors into our home with the passing of Jacob.....he tells people that we had a baby, his name is Jacob and he died. The end. Most of the time they haven't even made it up the stairs yet. It doesn't happen all the time but when it does, it makes for quite the moment. Most of the time people don't know what to say....usually they are just here to fix something so they go about their business. Today the man said, "So, no more baby?" and then had to go to his car to get something. I get it. Who knows what to say to that?

My instinct was to talk to Jonathan and tell him that we don't need to tell everyone....CAN YOU BELIEVE THAT WAS MY INSTINCT?!??!??! I DID NOT act on this instinct and thank the Lord I didn't! What a hypocrite I would have been! Jonathan stands by my side every time we are out and I tell someone about Jacob and I talk about what a blessing Jacob is to our family....he is only doing what his mama does! And who am I to put some stranger's feelings before one of the gifts God has entrusted me with?!??! (I know...shame on Karen...shame, shame to even think it!)

So, now, my outlook on the situation applies not only to me but to all my boys: better them feel awkward than us....we know what they are missing if we don't share. I feel terrible if I leave Jacob out and the last thing I need is to comfort someone else in my loss (I have never been one to hide much of what I am thinking:) I have spoken to a few other mothers who feel differently and I may someday, but right now, we are all about talking and that is what blesses us....it works.

I don't think I shared this with you all. The Friday of my crazy week of phone calls God gave to us, I went out to visit my sister with the boys in the evening. We sat at dinner and a young girl about 9 years old came right up to me and asked if we were sisters. I told her yes. Then Joshua came up to me and she asked if he was my son. I told her yes. She asked me if I had any other children. I pointed out Jonathan and then said that I had another boy in heaven. She said, "you mean he died?!?!" I told her yes. "How?!?" I told her that God made him so special and he wasn't made to live as long. Her mother told her that was enough but she just couldn't stop. I made it clear to the mother that I was fine with sharing.....it wasn't hurting me to share. So, this little girl went on and on....how did he die, when did he die, where did he die, what room did he die in, who was with him, do you miss him, did you bury him, did you baptize him, are you sad....believe it or not, these are not all of what she asked! Now, this mom was so very appreciative of me sharing with her....she tried hard to stop her and tell her it was enough, but she kept asking and I kept answering so it was ok. I showed her his picture, gave them a blog card with his picture and blog address and the mother looked at me with tears in her eyes and just thanked me for sharing. All I could say was, "No, thank you." Me, my boys, my sister and brother-in-law got into the car and as we were driving away, my brother-in-law asked, "Does that normally happen?" I said, "No. But she just asked all the questions everyone else wants to ask but just doesn't." We have been an open book so that if someone does ask, maybe there will be an impact on their lives and God just runs with it in their lives from there....who knows?

So, for us right now, it is better them feel strange than us feel guilty.....they'll get over it quickly where as we have Jacob forever stamped on our hearts....no regrets.

"We have a family of 5." "I have 3 boys." "Joshua, Jonathan, and Jacob Ryan."

Different Levels

This special ministry Of Jacob's life God has blessed us with has so many levels. This past year, I have looked so many mommies in the eye and hugged them and God has used that to minister to them and me. I am grieving. That hug or conversation or card that was initiated by me is not only to help the recipient but also a help to me. As you know, I consider it a true blessing to use my son's life to touch others. Could it be selfish? Sure, it could be. Because I get so much out of it....they feel comfort in knowing that I "get it" and I get the blessing of seeing my son's life still at work here on earth. But I took my efforts out and God brought forth so many more opportunities that bared much more fruit than my efforts could have ever brought.

I have received a few emails and phone calls from some friends with some concern in their voices since these last local contacts God has brought our way. Right here in my home town, in a matter of a week, I hugged members of 3 different families at wakes, hospitals, and funerals who had losses, plus received at least 5 phone calls and emails from others who have had a loss or anticipate it. My friends are just concerned for how we are doing with it....many of them have said that they don't think they could do it. That's the beauty of it....it's not natural to be able to do it....that shows God's hand in it. What does this do to a mother who's sweet baby boy was born just over 9 months ago and passed not quite 5 months ago? Keep reading and maybe you can decipher it.

Levels. Levels build on the foundation of the Lord. God has blessed this ministry with different levels. Informing level, emotional level, family level, onlookers level, grief level, levels I don't even know about yet. It is ongoing.

When speaking with these mommies, God gives me strength to inform. It's not emotionless but it is factual...if any of you have had a conversation with me, I am not one to beat around the bush...I say it how it is or was because that's what I know. I can get carried away in details sometimes and lose my point (and this is evident in my blogging too) but it is the facts of Jacob's life that many of these mommies want to hear just to get a glimpse of what they may be able to expect or how we dealt with something. Is it drudging things up? No...it is what it is and I have no problem sharing it....the question is, do you want to hear it how it actually was? I've had two specific instanced where a parent asked if I went out without Jacob. Now this is quite the loaded question....how do I tell them that I did and he died while I was gone. I do not feel regret in our story but I do know how this may be perceived. I've told both of them that I didn't want to answer them but as the conversation led on, I just didn't feel right not to....I have nothing to be ashamed of...it is what it is. God made me realize that this is my story to share that HE gave me and who am I to edit the work of the Lord....that day was huge in my life and if given the opportunity to share the specifics of how God worked that day, then I can share it.

But the emotional level is kept very secure. The Holy Spirit has given me discernment on my role and limits in these families lives. I am a stranger. I am emotionally unable to feel what they feel because their baby is not my own. I felt that way about Jacob and no other. I am simply there as an encouragement of surviving it.....to hug and be there as a friend...not a mommy reliving the life and death of her son. I had no idea what I was going to do when I met sweet baby Rachel in the hospital. God has given me a true peace that my son Jacob now lives in the presence of the True King and no baby here on earth could replace him....Rachel was a true test of this and it stood strong....I do not have an unhealthy desire to see a glimpse of Jacob in other babies. Was I totally cold? No! The emotional part is very much the same as it would be for anyone to see a sweet baby not made to live in this world for very long. It is not easy for anyone to see a baby struggle for the next breath if there even is another one. It is not easy for anyone to see tiny white coffins, baby pictures and tearful eyes at a funeral home. It is not easy for anyone to think of what to say to a mother who's baby's body is no longer holdable. It wasn't any more difficult for me as Jacob's mother as it would have been prior to him...I thought it should be but it really hasn't been...if anything, it is easier...can't explain that....it just is. I can be a comfort to other mothers and not have to relive losing my own son. How can this be comforting for these families? I "get it" because of my child, not theirs. They don't have to worry about me or how I am feeling. I am purely there to be a support to them because I understand the kind of loss they are experiencing... (that is going to be hard to understand but maybe you will get it). The Lord keeps this emotional level under strict security and has not allowed me to actually feel my loss over again.

Another level is our family. The Grapes family was the first family we were blessed to minister to as a family. Jason came and supported the family members and the boys helped shop for a meal for them. We all attended the service together. It was OUR ministry as the family of Jacob Ryan...not just me as the mother of him. This was nice but it threw 3 more concerns for me in there....Jason, Joshua and Jonathan. How were they going to be? Does the Lord have their lives guarded the same way mine is? But again, the Lord sorted things out and allowed us to know our limits and we obeyed that and enjoyed this ministry together.

Then there are the onlookers...the balcony level. I have become more aware of this level as time goes by. Mothers, fathers, sisters, brothers, husbands, friends, neighbors, church members, etc. of those who have lost a child have come to me personally and said how us being involved has blessed them. How we have helped like no one else could. This level is a testimony of how God uses our lives when we don't even have a clue. Again, I can take no credit for these instances....my efforts have been towards the parents, but the Lord used us in the lives of those who surround these parents and they, in turn, blessed me for noticing this ministry. Cool.

Grief. It is a level unto itself. The foundation is the Lord but grief is the ground level that this ministry is built on. I miss my son. I am still on this journey. Living life with a loss is rough road. This ministry is because of my grieving but it is not to take this journey from me or make it any easier. It blesses me tremendously but I still have my rough road. I still have my nights of disbelief. I still have my nights of rummaging through his belongings. I still have my unstoppable tears when I cling so tightly to his blanket that smells of him. Those moments where I just want to feel him on my chest again, hear his sigh, touch his tiny everything. This grief has nothing to do with Rachel, Johnathan, Kayden, Joel, Poppy, Miller Grace, Mary Grace, Maddox, Eva, Tristan, Isaac, Asher, Hannah, Emma, Christian....(it is sad how this list goes on). It has everything to do with Jacob. No one elses babies can initiate these moments. They are mine. and this ministry has opened the doors for me to grieve with others but there are moments that are just mine. It is my separate journey that I am traveling. This ministry is an offspring of my grief....not grief being an offspring of my ministry. (I just love it when that statement of clarity comes to mind...so profound....well to me anyways.)



So there is some of it. A few things that have been spinning in my mind. It is good. It is healthy. It is fruitful. It is the Lord's work. It is the life of Jacob Ryan continued.....

Some pictures of Rachel and words from her mother

Hi all...I just checked in on Rachel's blog and you too can see the sweet face of a precious girl I was blessed to meet in person twice! Her mother also blogged a bit. Check in on her here and there....she said she will update when she can. Enjoy.

http://www.rachelgrapes.blogspot.com/

Rachel's Blog

While in the waiting room, a diary began that was passed around to family and friends of Rachel. It is a sweet collection of encouragement to the family. Enjoy.

http://www.rachelgrapes.blogspot.com/

(Don't forget that blogs post most recent posts first so go to the bottom and read upwards to read in order.)

Rachel's dad Dave really wanted you all to know how much he appreciated your prayers. He wanted others to know how our babies touched people and so he gave me a copy of the diary to post...I was honored to set it up. Our babies have touched the NICU here, our families and friends and the world. Thank you for being part of that.

Rachel In Her Real Home

Rachel went to meet Jesus this morning at about 2:00am. She lived an unforgettable life in 3 days and 3 1/2 hours. Please be praying for her parents and 6 big brothers and sisters. Thank you.

They had some very sweet memories and she accomplished so much in her time here with us.

I am honored to share that one of the things they had time to do with her are her hand prints and footprints in Crayola Model Magic....yesterday during our visit, we gave them this idea from when we had Jacob. Dave expressed to me today how much that means to them to have that little token.....Jacob's life helped them treasure Rachel's memory in this small way....thanks Little Man.

Visiting Rachel & Family

Today we were going out to visit a friend who lives near the Grapes....they live 30-40 minutes from us so we thought that while we were out there we would stop in and bring them a meal. It was great to meet more of their family in person and Jason and the boys got to talk with the family and be of encouragement to them. It is such a blessing to be a support....it really works both ways....they are blessed to talk with people who have been there and we are blessed to serve and be around others who "get it." Rachel looked so good today...pink is her color! We were told that she had some tough spells that are very difficult for her to get out of. This is very scary for the family. We met the oldest children (I will refrain from using real names until I have permission to do so) and it is hard for them to go on with regular life because they want to be there and don't want to miss anything. They are such a help to Barb though....while I was there, their second daughter popped in a couple times to see if there was anything Barb needed and the oldest was helping out too. Please pray for their strength to grow as they go through this as a family. It is very hard to sit and stare at your child or sibling knowing you don't get to keep them.....it is not natural for us and everything in us wants to keep them. Just pray for them. They are very encouraged to hear that Jacob's fans are praying for them....they know how great you all are so THANK YOU! Love, Karen

Rachel traveled home!

(If you don't know who Rachel is, please read yesterday's post)

Rachel traveled home with her mother yesterday evening! This is a dream come true for the family. What a strong little girl! They are all thrilled. Please keep praying for her strength and theirs. She eats every 2 hours and taking care of her on top of 6 others has got to be trying but they are doing what they can to enjoy every moment. Thank you all for the prayers.

Rachel

Jacob's neonatologist has just blessed my heart so much by passing on my info to a family. Rachel is the baby's name. Born Wednesday night weighing in at 5 pounds. Her diagnosis: T18. I received a call this morning from her father Dave. He had a whirl wind of questions that I did my best at answering....it was tough because I am not a professional, just a mom who has been through it, but I didn't want to over step my territory and get into too much medical stuff that the doctors and nurses should be fielding. I made the offer to go up and talk with Rachel's mother Barb and meet Rachel. He enthusiastically took me up on my offer. I immediately got into my car and drove to the hospital and walked into the very room Jason and I received Jacob's T18 diagnosis. There I laid eyes on a small sweet baby girl who just blessed my heart at that moment.....with sweet tiny squeaks and cries, it was such an honor to be there and meet her. Barb knew who I was because of the conversations with the Dr and she knew a lot about Jacob and she too had lots of questions.....again I did my best.

Here are some ways to pray more specifically:

Please pray for this family. You now have names of Rachel and her parents....I do not have the names of Rachel's SIX other siblings though!...but pray for them as well.

This whole experience has been such a whirl wind....a true blessing to me to use my son's life in such a way but yet difficult to watch a family go through what I know all too well. I think they know my heart....I just am so unsure of myself in this uncharted territory that it just makes me question.... it is prideful for me to think that my words may be so impacting on them, yet careless for me not to take heed in my statements and realize what ears they may fall on and what conclusions may be drawn for them.....a very strange balance to try to achieve. Pray for me as I seek wisdom, healing and I sort through the different levels of involvement the Lord may have for me here and all the emotions that go with it all. I am so willing and the Lord has blessed me with such humbling opportunities....it is truly magnificent to be used by the Lord.

Pray that the family and friends take to heart that these babies all have different levels of severity and there is no way of comparing and knowing what to expect because of another case....it is hard to know that there are other babies out there who have lived so long and not desire that for your baby...I know this all too well.

Pray that every moment Rachel is here is treasured.

Pray that the family's wishes and goals for this time are achieved.

Pray that the right people are brought into their lives during this time.

Most of all, pray for sweet Rachel as she blesses this world living in her sweet body and battles for her life to just be loved.

Thank you all. I will do my best to keep you all updated. God Bless.

More delivered right into into my lap

This very moment, I am just in awe of how the Lord works.....my heart is fluttering with thankfulness for what the Lord has done. Today, I received two phone calls that were specifically to contact me about how Jacob's sweet life touched mine. Although the calls were very very different, the only reason I got them was because of how the Lord used Jacob in my life and these people knew that I love sharing it. Once again, all I had to do was pick up the phone....the Lord brought them right to me and delivered them right into my lap!

One call was from one of Jacob's NICU doctors (one of the sweetest most pleasant Dr's who was there for us and followed his story....thank you!). She contacted me because she knew of another baby with T18. First off, pray for this family! I know nothing about this family so my prayers cannot be specific by name, but I can pray for them specifically by what I have experienced so please be lifting this family up in prayer. I was honored to be contacted by this doctor who was asking me if this family could contact me! I have no idea what will come of it because I know things can get pretty crazy with gathering info and such but on top of praying for their journey, I am praying that the Lord would use Jacob's life to bless this family in some way. I have been so blessed to talk to other mothers all over the nation and now, right here, there is a family embarking on this amazing, crazy, scary journey....I am excited to see what the Lord has for our family in this situation....even if this family doesn't contact me (I pray they will) my heart was so blessed that Jacob's doctor was so touched by our baby boy that even 9 months after he was her patient, she shared his story with another patient's family with tears streaming down her face because of what he meant to her......I AM SO PROUD OF MY BABY BOY!

Next phone call, very different than the first. A family in our church had a baby pass away yesterday. The baby never made it home from the NICU (the same hospital that Jacob was at) and this was not an anticipated death. Please be in prayer for this family. The phone call was the grandmother to the baby and she was just asking me some things that we did with Jacob. I want to make it very clear, I am in no way excited about this situation....I think you get that.....but what touches my heart, is that even in the midst of their terrible loss, the Lord has used Jacob's life to help someone. This is my grieving process. It's positive. The Lord has given me a vision to see where Jacob's life here on earth, the legacy he has left behind, and all I have experienced through his life can help others. I knew this before, but the Lord is just filling my plate with all these families and my heart is just overjoyed and blessed by these opportunities. To all of you out there who have been touched by him, THANK YOU for letting my Sweet Boy into your lives and helping me grieve and heal knowing that the Lord is doing great works even among such tragic circumstances. I am a mama who sees the work of her Heavenly Father through her sweet son.....here is a time to be proud.....proud to share the work of the Lord. That's my boy.

Mush

I keep thinking of posting (Jason was the one who posted last time) but in all reality, my brain is nothing but mush. So, instead of making the effort to put two thoughts together and state something profound, I have just surrendered to mush. This has proven very productive....really it has. I have this amazing gift of Jacob that I try to make the most of but it is not for me to use. I try to communicate with mom's because I am so burdened for them and their families....but reality sinks in.....MY plans mean nothing. MY efforts are lame. I cannot make a difference in any one's life (despite what you think Mom:). God can. He can use me. He can (and has) use my son's story. Anytime I make the attempt to help someone else with using our story, it blesses ME instead! So, my mushy brain is the work and blessing of the Lord.....I can only put two thoughts together because He allows me to, when He wants me to, to bless who He wants. The effort on my part is so minimal and I love it that way. One evening last week, my phone rang.....I didn't do anything to make it ring.....all I had to do was answer it. It was a mother calling to ask me how we dealt with some controversial things with Jacob. What a blessing it was for me to use Jacob's life to help....oh, how that melts my heart!??! I made myself known to her in the past and I picked up the phone when the Lord wanted to use me. That simple. The Lord just lays amazing opportunities right in my lap. Last weekend, an old friend came into town because her nephew passed away....he was born under two months ago at the same hospital Jacob was. I had never met the baby's mother but I realize the importance of supporting people, so me and some common friends went to the wake. At first, I was being selfish and dramatic....I felt nervous about going because that very same hurse that took my son's body from me was the one that took this baby boy....it was the same funeral home (if you don't know the ridiculousness of my experience go to the post on May 31st...have tissues). But I talked myself out of the dramatics and plunged forward. I wanted to go to support my friend and let her sister know that I am here, I "get it" and I am in the neighborhood....here I went to be a comfort to them and my brain contains nothing but mush and I have no idea what I said (I was probably one of those people who say ridiculous things just because I knew nothing else to say!)......it turns out to be such a blessing for me.....Jacob's life blessed this family weeks ago although they knew very little of us....when this boy was in the NICU, the nurses made something for them using the scrap booking supplies "Jacob" donated. This mom was so comforted by it she plans to treasure it with his other memories. Oh, that just made my heart sing praises to the LORD! Here, she has been touched and although I thought I was going to be there for her, God gave me a gift that evening when I was expecting to be a broken mess. I could not have planned this or expected any of it. There is nothing we can do unless the Lord wills. We don't have a clue as to who or how or when!....the Lord makes blessings out of mush. I love mushy messes....it makes it easier to rely on the Lord and see His work.

It's Been A While

It's been a while since I posted and for those who have been checking in on us and wondering... I apologize. I don't know that I've been actively avoiding it... just haven't had the words lately. I think about Jacob everyday ... but those are my thoughts... not to be shared at this point. Sorry. As I was doing my Experiencing God devotion book this morning though I came across a story that I thought I'd share because it mirrors what we went through with Jacob and I thought it might be good for some of you out there reading this blog. So here it goes:

"When our only daughter, Carrie, was 16, the doctors told us she had an advanced case of cancer. We had to take her through chemotherapy and radiation. We suffered along with Carrie as we watched her experience the severe sickness that accompanies the treatments. Some people face such an experience by blaming God and questioning why He doesn't love them anymore. Carrie's cancer treatments could have been a devastating experience for us. Did God still love us? Yes. Had His love changed? No, He still cared for us with an infinite love.
When you face circumstances like this, you can ask God to explain what is happening. We did that. We asked Him what we should do. I raised all of those questions, but I never said, "Lord, I guess You don't love me."
Long before this expereince with Carrie, I had made a determination: no matter what my circumstances, I would never look at my situation except against the backdrop of the cross. In the death and resurrection of Jesus Christ, God forever convinced me that He loves me. For this reason during Carrie's illness I could go before the Heavenly Father and see behind my daughter the cross of Jesus Christ. I said, "Father, don't ever let me look at my life and question Your love for me. Your love for me was settled on the cross. That has never changed and will never change." Our love relationship with the Heavenly Father sustained us through an extremely difficult time."

How true that has been in our lives as well. Now when I think of Jacob, I will think of him with the backdrop of the cross. It is God who gave and took away. It is God who sustained us. It is God who loved us enough to draw us into a relationship with Him. It is God who is to be loved and praised regardless of the situation in front of us... because behind that situation is the backdrop of the cross. There is nothing that can happen in the foreground that can negate or over rule that which is in the background. The cross trumps it all. Thank you for the cross!

A Hint of Clarity

Where do I begin??? Just this past week, I was speaking with my oldest sister on the phone. It came up how I just want to share this journey but I lack the words to describe specific significant moments (seriously, I used to read a thesaurus for fun because I lack descriptive words....weird, I know...sshhhhh don't tell). I lack accurate consistent descriptive words that will clarify this amazing journey. I am wishy-washy....not with what has happened, but just in how I explain things. I use words like "ridiculous" to explain lots of events with Jacob and then I have to then go further to explain what I mean by that......I want words that just say it....and this is something that after speaking with my sister, I realized it will be the work of the Lord. Why? because I am praying God would use this story in even bigger ways. But I realize that this is a ministry from the Lord and I HAVE to give this beautiful story, of how Jacob brought me closer to the Lord, time to be sorted and clear and strong....it is not about me, it is about the work of the Lord. So I have been sitting back and trying to dissect certain profound moments and trying to figure out accurate descriptive words.

Along came our church's pastors. They contacted Jason and me to be group leaders of a church family Bible Study. We accepted the invitation....the study is "Experiencing God." I chuckled inside because I have experience God more these past 10 1/2 months than ever before in my 13 years of knowing Jesus as my Savior. But I prayed that this study would help me clarify how I have experienced God and how to share it with others as to experience Him more and more.

One of the events I struggle to find accurate words to relay God's amazing work is October 3rd, 2007....that is a profound day in my walk with Christ. This day was the day I went to get a routine ultrasound and found out my baby boy would struggle for his life once out of my womb. All you blogger friends do not know this story because we met you the day Jacob was born and once we knew of our journey with T18....this is some of the story prior to a T18 diagnosis. So here is the letter I emailed our friends and family on October 7th, 2007:

Hello everyone~

I am writing this from a position I have prayed to never be in but yet God has given us a joy in our circumstances for He is the giver and creator of all things and there are no mistakes under his watch and care. I wish I never had to find joy in my children having struggles but here we are faced with our biggest chance to experience God's love even among times of pain and uncertainty.

On October 3rd, I went for an ultrasound at the Regional Perinatal Center at Children's Hospital to get a better picture of the 4 chambers of our baby's heart. There, the sonographer (with 9 yrs. experience) could not get the picture she wanted from the angle she wanted. Suspicious of complications, she volunarily called a magnificent OBGYN who works with high risk deliveries to take his own personal time and take a look at her findings. After observing for a while, he determined that our little baby's heart is not functioning the way a normal heart should. I am not a doctor, just a mother who listened and may have some things mixed up at this time but I will do my best and correct myself later. His left ventricle is very small and shows signs of congenital heart disease. His right ventricle in enlarged (probably to compensate for the left side) and the two major arteries are connected to the right side parallel (there should be one connected to each ventricle criscrossed). He has developed a hole between the two ventricles which allows circulation to go to the left side....this is a GOOD THING....the heart is a muscle and needs to exercise and the way it does that is by pumping blood so the hole allows it to have something to pump. He needs surgery.

On October 5th we met the baby's pediatric cardiologist....he holds up to his fabulous reputation from many I know in and out of the medical field...he is a blessing. After his observations of the baby he is very positive in the success of surgery after the baby is born. Depending on the development of Jacob's heart in these next 4 months in the womb, one of these 2 possible surgical procedures could take place:
1) Jacob's left ventricle continues to grow at a steady rate and is salvageable, he will have a surgery correcting his 4 chambers at about 5-7 days after birth.
2) Jacob's left ventricle does not grow, they have to make his heart into a 3 chamber heart with a series of surgical procedures: The first procedure would be at 5-10 days after birth, the second at 6-8 months, and the last at 4-6 years.....as the heart grows the materials (tubes and such) have to be lengthened.

The preference is the first surgery so what we need is for his little heart to grow and make the most of the left ventricle....please pray for this growth!

As for how we are doing, it is times like these that God's presence is so evident in our life. God has blessed us with the right doctors going beyond what they are required to do and we recognize God's goodness in that. He has given me the calmness and trust that only He can provide. All the medical professionals we have come in contact with have commented at our reactions and we praise God for giving us the strength to be a witness of His love through this. At weak times we allow our concerns to get the best of us and the hardest times are yet to come (like allowing doctors to open up my newborn babies chest to operate!) but God has shown us His love through the shock of finding this all out and He will never leave our sides....we trust Him. Please pray for us as parents to make the best decisions with what is put into our hands to decide.....there are not many things we have to decide but there can be great stress in what we do have to choose.

We will keep you updated on progress as we find things out....we have another appointment with the pediatric cardiologist in 4 weeks and I have my regular OB appointments so if there are changes I will be sure to let you know.

For those of you who have known and prayed for our little one, we thank you so much and ask that you continue to pray for his strength to grow in the womb so that when he is born, he is strong and ready for the procedures that need to take place. Please pass this along....we need as many prayers as we can get!

Thank you and God Bless.

The Fahmers ~ Karen, Jason, Joshua, Jonathan & Jacob

You see, on October 3rd, there was this "ridiculous peace and calmness" that was supernatural....it was the Lord. Up until tonight, I lacked that single clarifying word to describe this significant turning point. I tried my best but I just fell short and struggled through and people patiently listened and tried to get it but I just knew that my words were not accurate enough.

So after doing just the first lesson in this Bible study, God gave it to me....finally!....here is the statement I read that made it click, "When you get to the point in your life where you trust Jesus to guide you one step at a time, you experience tremendous freedom." THAT'S IT!.....FREEDOM! That day, I had a nightmare come true and I had nothing to lean on.....that day, I trusted Jesus to guide my steps one at a time and I experienced freedom. Did things go great from there on out? Nope....not according to the standards of this world. But this freedom I have in Christ, gave me the strength to get through a living nightmare with joy and peace. I love it!...freedom.

I am just so excited to have this clarity to describe that day. I know it is just one word but do you know how significant that day was? I know what happened and what I felt....and I just want to share that with everyone.....and when I am trying to relay it to others especially those who do not know Jesus, I want people to know that a walk with Christ is REAL....it is not just a religion I practice....it is a real relationship where there is true freedom.

So this is just one step towards clarity....I am just so excited! God's work is so exciting....get on board.

Jacob being used by Christ.....what a journey?!?!?.....one well worth taking.

"It is for freedom that Christ has set us free. Stand firm, then, and do not let yourselves be burdened again by a yoke of slavery." Galatians 5:1

Please Vote For Jacob!

We're not sure who nominated us for this award but anything that spreads Jacob's message to others is worth a vote! Thanks!

Mom to Mom

It has been over 3 months since my baby boy has passed. So much has happened. There hasn't been a single moment that I have felt as though our loss was for nothing. These past 3 months have been jam-packed with unbelievable experiences that just would not have happened without the blessing of Jacob. These past few weeks, I have been in personal contact with 14+ mothers who have experienced or anticipate a loss. Each one of those contacts are because of God using Jacob's life to bless another. I just rejoice! That sounds ridiculous to those of you who have no clue. I have been told that it is kind of strange the joy I have through all this.....almost bothersome.....call it strange, or call it bothersome......I call it the PEACE OF THE LORD! Others who know the Lord may grieve differently, but this is it for me....I will be positive, I will use my baby boy's life to help others, my home will be a happier place because of Jacob's life and death, my other sons will see the goodness of our Lord even in hard times....will I fail? Yep, already have....will I persevere.....with the Lord by my side, He will have the victory!...Satan will have no part of Jacob's life.

These contacts that I have made have blessed me so much. It is just conversation but it is conversation that cannot take place with just anyone....it is a conversation that has a comfort because on the line are two people who "get it." It may be talk about medical things or what we did at home with Jacob or decisions we had to make or what we thought about certain issues or what we did for his memorial service or how we arose at certain conclusions.....but it amazes me how I have no idea who these women are but yet we talk with such ease and understanding. Jacob's life and death have made it possible. I get to be there for other women.....a ministry that would not have been possible without that sweet blue eyed prince. If you are a mother who needs to talk to someone who "gets it" please contact me.....I have been blessed to speak with mothers touched by T18, mothers who have had "unexpected" losses before and after birth....I do not claim to know it all and although I have been there and I "get it" I still have no idea what to say, but Jacob's life is available for the Lord to use and I will do my best with Him as my guide. You can email me at babyjacobryan@gmail.com.

I know many of our blog fans have given up on us now with our lack of posting....thanks to all our faithful fans! Posting doesn't come as easy as it did before. There are a few good reasons: Joshua & Jonathan. I have been spending lots of time with them. My computer has seen a whole lot less of me and I like it this way....I miss all of you but in all honesty, you are all strangers (well most of you!) and 2 of 3 my boys are here and you all understand that. I have this amazing opportunity with 2 of them....it is an opportunity that only comes once and I am wanting to cherish it because not everyone (Jacob) has any left.....this opportunity is called "time." I am homeschooling them and loving the time it makes me put into them. So, I will continue to "grieve" here....this blog is entitled "The Life of Jacob Ryan Fahmer" and his life continues to touch others as it should. I will continue to share how his life touches others and continues to touch our family. I have decided to keep this blog true to it's title and keep our recent events here at home, here at home.....I may begin a new blog for the other boys but right now is not the time. I still have so much to share about all the Lord is doing in my life these past few weeks.....and I will right here on this blog.......but my computer time for now has expired.....

to be continued.....

Gotta Love The Fans....

While doing some work down here in Louisiana I came across some history of the Lake Charles area. The father of Lake Charles is John Jacob Ryan, known just as Jacob Ryan. The main thoroughfare through Lake Charles, is named Ryan Street, after him. He opened a sawmill on the lake and claimed the land around it. He eventually sold the land by 100ft rope lengths (now the city's downtown). John Jacob Ryan died on Dec 17, 1899.
It seemed appropriate that I do something in honor of both Jacobs. I couldn't come up with anything too spectacular but since I was surrounded by a lot of beaches and water I managed to spell out Jacob Ryan using sea shells. I was trying to beat a storm coming in so the letters are a little off. The second picture is a view across the lake as you look over the name. I wrote this further inland on the beach away from the waves so I hope it stays for awhile.
Sue

The Boys At Aunt Julie's Wedding

More Stories of Families Touched by Trisomy 18

I have been kind of out of the world of blogs lately sticking with my sweet friends that have experienced the loss of their child or children. It wasn't until I came in contact with Little Jonathan's mother that I found another family going through the journey of Trisomy 18. This evening I found 3 other stories on blogger.

Julie and her husband Noah welcomed their baby girl it into this world last week, August 6th. Magdalena Grace is such a fighter and her and her family have hopes of welcoming her into her earthly home soon. I made a little bit of personal contact with Julie tonight and hope to continue to minister to her and her family with Jacob's life. Her blog is:

http://noahandjulieroberts.blogspot.com/

Christian is a baby boy who's mother Leah will be induced next Friday the 22nd. Their blog is:

http://www.thenaplespaiges.blogspot.com/

Karen is the mother who awaits the arrival of her sweet baby boy on the 27th of August. Their blog is:

http://www.zuckerofamily.blogspot.com/

I have this ridiculously overwhelming desire to travel to hug these mamas. There are very few people who really "get it" and prior to meeting with, crying with and hugging 8 other mothers who have lost their babies, I would have never known that there are others out there who get it. I am so motivated to minister how ever I can with Jacob's story. He has opened my eyes to another world that I am just so in love with and I just want to make the most of all I have learned. Please pray for these families. Please pray for me and I find the words and actions to support them. Thank you for your faithful love and prayers.

Some losses are fun!

So many losses are tough but it is refreshing to know that not all are this way....Today, Joshua lost his first tooth! We have been waiting for this day for a few weeks now since his adult tooth broke through behind it.....finally the baby tooth came out! He was so excited and when I told him I wanted to take his picture he asked that I post it on the blog for you all to read.....he loves the fans just as much as Jacob did! :)

My Big Sister is Married!

On 08/08/08 my big sister Juli became a Misses! The boys were the ring bearers so of course we took tons of photos....here are some:

Prayer for "Little Jonathan's" Family

On July 29th, I requested prayer for another family effected by Trisomy 18, "Little Jonathan's" family. Please continue to pray for them specifically because Little Jonathan went home to the Lord this morning. Please be in prayer for his family as they begin this journey of grief. Thank you.

Every Moment Counts

"Trust in the Lord with all of your heart; lean not on your own understanding. In all of your ways, acknowledge Him and He will make your path straight." Proverbs 3:5,6

I sit and watch the Olympic games and my favorite sport is swimming. I understand the sport because I was a sprinter for 6 years....of course I didn't achieve the level of skill the Olympians have but I did race to achieve some state recognition. What I learned as a racer, combined with these Olympic games, combined with my gift of Jacob results in a clear point.....every moment counts....every fraction of a moment counts. When I was swimming a relay race in a state competition, the relay I was in tied our school record.....one kick just a bit harder, one stroke a little bit faster, just a fraction of a second faster and we would have broken it.....but we tied it right down to the hundredth of a second. The value of a fraction of a second is magnified with these Olympic swimmers.....all 16 competitors can be within a second but that second is divided into gold, silver and bronze winners....all within the same moment but divided by those fractions of a second. Jacob has shown me the value of a second....one second he's doing great, the next he's not breathing.....one second he's resting in my husband's arms, the next he's embraced by the One True God. The moments we spend here count....every fraction of them. What we do with them matters.

I try so hard to be a good testimony to Christ with my life and all I do....more so since Jacob's passing, I have been able to reach and touch so many people's lives. But why? I have come to realize how prideful I am. I fall into this lie that the only way to be used is to live perfectly (I have NEVER lived perfectly!) When I fall into sin, I feel that all I have done is lost. I had a long weekend of sorting through some things that I have done....sins that I have committed against my Lord....falling hard. I live as a forgiven sinner....my sins were paid for on that cross that Christ died upon...so I do not relive what I have done but I do try to learn from it and value the lessons that hide within my bad choices. When I am in sin, I am less of what God wants me to be....I am not a testimony to His love, I am not a testimony of what fulfillment a life with Christ brings, I fail to be a representative of a household that follows Christ and I fail to show the beauty of a mother shepherding her children in their walk with the Lord. I am so prideful. I have made things all about me. My perspective is so wrong.....when I fall, I think about what others will think of me and how my testimony will be effected instead of weeping for the fact that my Jesus hung and died on a cross for that sin....how dare I care what others think before I think of all the Christ has done for me. I realize that anytime someones life has been touched because of what the Lord has done though me, a sinner saved by grace, it is ONLY by His grace that I have been used in other people's lives. So why do I try to live right, make the right decisions and choices? Because I want to worship Jesus. Why do I fail miserably? Because I am human. Because I am selfish. Because if I didn't fail, others would follow me instead of Christ. So in the midst of sin, I see the cross....I embrace the cross....and I am thankful for the cross.....and I am motivated by the cross....not to earn anything, because my sin has been paid for, but to show Him that even though I have failed Him, I am thankful for all He has done for me and it is only because of Him that there is anything good that has come from my life. So what value is there to this lesson of falling into sin? Forgiveness. Thank you Jesus for using me. Thank you Father for allowing me to see that when I fall, your embrace is so much sweeter because of my recognition of my need for you. Thank you for your forgiveness even when I fail you miserably.

So what does this have to do with "every moment counts." EVERY moment counts....good or bad. God will use my life to impact others and I will embrace the moments and do my best to live for Him. But I will fail. And in the midst of my failures, I will be reminded of God's forgiveness and make every moment count and use these failures to learn more about who I am IN CHRIST. Every moment happens and what happens in that moment matters. He will make it count even when I mess it up. He will use me how He sees fit and if I make a tiny bit of difference in someone else's life, it is a miracle because I am a sinner. All that is good comes from Him.

"Trust in the Lord with all of your heart; lean not on your own understanding. In all of your ways, acknowledge Him and He will make your path straight." Proverbs 3:5,6

Newest Fanmail!

"Hello Fahmer family!
I hope you are all as well as you can be in this lovely summer. I read Jacob's story from almost the beginning, and I have to tell you, he touched my heart in such an amazing way, and I deeply thank you for sharing his story with all of us on the internet. I was meaning to write to you ages ago, but with one thing and another I never got round to it, I'm sorry about that.
Anyway, the reason I email you now is, well, it's a story really. I was at the beach today with my family, and my cousins and I were writing things in the sand. And I looked up, and I saw a cloud in the sky in the shape of a J. Instantly, I thought of Jacob, and decided to write his name in the sand. So I did, and then I remembered that I had been meaning to email you and thank you for sharing him, and his story with everyone, and decided to take a picture of his name in the sand, and send it you when I got home. Long story short, I did. So the picture attached is Jacob's name in the sand, at Southport beach in Merseyside, England.
THANK YOU for sharing Jacob's amazing story, and God bless you all! Kathryn"

Just a Moment of Faith

A few weeks ago, I was struggling with my time I spent reading God's Word. Since October 3rd of last year, I had been experiencing God in such a different way...there was a secure presence of the Lord....it was calming and so real.....He truly was holding me and continues to do so. I would read my Bible very limitedly....I would find a verse and just cling to it and repeat it throughout my day....that is when Jacob's verse Psalm 27:14 "Wait on the Lord; Be of good courage, and He shall strengthen your heart; Wait, I say, on the Lord." was all that would get me through so many times....I hoped to be strengthened and, OH, how He delivered that promise to me and continues to do so!...that one verse lived out in my life meant more than walking away unchanged after reading the Bible backwards and forwards. SO then, I got fed up with not knowing were to begin studying, so I said, "Lord, I am starting at the beginning..." since my time awake was limited (I fall asleep super quick-like), I opened my Bible to Genesis and began to read. I felt pretty good so I read a little side devotion and at the very end there were some verses that led me to the book of Hebrews....(it's long but stick with me)

Hebrews 10:32-12:2 (New International Version)
32Remember those earlier days after you had received the light, when you stood your ground in a great contest in the face of suffering. 33Sometimes you were publicly exposed to insult and persecution; at other times you stood side by side with those who were so treated. 34You sympathized with those in prison and joyfully accepted the confiscation of your property, because you knew that you yourselves had better and lasting possessions.
35So do not throw away your confidence; it will be richly rewarded. 36You need to persevere so that when you have done the will of God, you will receive what he has promised. 37For in just a very little while, "He who is coming will come and will not delay. 38But my righteous one will live by faith. And if he shrinks back, I will not be pleased with him." 39But we are not of those who shrink back and are destroyed, but of those who believe and are saved.
Hebrews 11
1Now faith is being sure of what we hope for and certain of what we do not see. 2This is what the ancients were commended for.
3By faith we understand that the universe was formed at God's command, so that what is seen was not made out of what was visible. 4By faith Abel offered God a better sacrifice than Cain did. By faith he was commended as a righteous man, when God spoke well of his offerings. And by faith he still speaks, even though he is dead.
5By faith Enoch was taken from this life, so that he did not experience death; he could not be found, because God had taken him away. For before he was taken, he was commended as one who pleased God. 6And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him.
7By faith Noah, when warned about things not yet seen, in holy fear built an ark to save his family. By his faith he condemned the world and became heir of the righteousness that comes by faith.
8By faith Abraham, when called to go to a place he would later receive as his inheritance, obeyed and went, even though he did not know where he was going. 9By faith he made his home in the promised land like a stranger in a foreign country; he lived in tents, as did Isaac and Jacob, who were heirs with him of the same promise. 10For he was looking forward to the city with foundations, whose architect and builder is God.
11By faith Abraham, even though he was past age—and Sarah herself was barren—was enabled to become a father because heconsidered him faithful who had made the promise. 12And so from this one man, and he as good as dead, came descendants as numerous as the stars in the sky and as countless as the sand on the seashore.
13All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance. And they admitted that they were aliens and strangers on earth. 14People who say such things show that they are looking for a country of their own. 15If they had been thinking of the country they had left, they would have had opportunity to return. 16Instead, they were longing for a better country—a heavenly one. Therefore God is not ashamed to be called their God, for he has prepared a city for them.
17By faith Abraham, when God tested him, offered Isaac as a sacrifice. He who had received the promises was about to sacrifice his one and only son, 18even though God had said to him, "It is through Isaac that your offspring will be reckoned." 19Abraham reasoned that God could raise the dead, and figuratively speaking, he did receive Isaac back from death.
20By faith Isaac blessed Jacob and Esau in regard to their future.
21By faith Jacob, when he was dying, blessed each of Joseph's sons, and worshiped as he leaned on the top of his staff.
22By faith Joseph, when his end was near, spoke about the exodus of the Israelites from Egypt and gave instructions about his bones.
23By faith Moses' parents hid him for three months after he was born, because they saw he was no ordinary child, and they were not afraid of the king's edict.
24By faith Moses, when he had grown up, refused to be known as the son of Pharaoh's daughter. 25He chose to be mistreated along with the people of God rather than to enjoy the pleasures of sin for a short time. 26He regarded disgrace for the sake of Christ as of greater value than the treasures of Egypt, because he was looking ahead to his reward. 27By faith he left Egypt, not fearing the king's anger; he persevered because he saw him who is invisible. 28By faith he kept the Passover and the sprinkling of blood, so that the destroyer of the firstborn would not touch the firstborn of Israel.
29By faith the people passed through the Red Sea as on dry land; but when the Egyptians tried to do so, they were drowned.
30By faith the walls of Jericho fell, after the people had marched around them for seven days.
31By faith the prostitute Rahab, because she welcomed the spies, was not killed with those who were disobedient.
32And what more shall I say? I do not have time to tell about Gideon, Barak, Samson, Jephthah, David, Samuel and the prophets, 33who through faith conquered kingdoms, administered justice, and gained what was promised; who shut the mouths of lions, 34quenched the fury of the flames, and escaped the edge of the sword; whose weakness was turned to strength; and who became powerful in battle and routed foreign armies. 35Women received back their dead, raised to life again. Others were tortured and refused to be released, so that they might gain a better resurrection. 36Some faced jeers and flogging, while still others were chained and put in prison. 37They were stoned; they were sawed in two; they were put to death by the sword. They went about in sheepskins and goatskins, destitute, persecuted and mistreated— 38the world was not worthy of them. They wandered in deserts and mountains, and in caves and holes in the ground.
39These were all commended for their faith, yet none of them received what had been promised. 40God had planned something better for us so that only together with us would they be made perfect.
Hebrews 12
1Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us. 2Let us fix our eyes on Jesus, the author and perfecter of our faith, who for the joy set before him endured the cross, scorning its shame, and sat down at the right hand of the throne of God.



What did I see in these verses? I have yet to figure it all out...but that evening, as I struggled to find a place to begin, I was literally sucked in to all the people who are listed. At the time, I did not go into deep study of each person mentioned (I will)....I just saw this on going list of names of men and women who had faith......All I could think was how amazing it would be to be listed as someone who lived by faith....but then I realized.....not everyone mentioned lived a life full of faith.....God showcased a bunch of people who were sinners....but what did it for them?....what were they an example of?....a moment in life.....just a moment of faith.....they displayed, at some point in life a moment of faith, "the substance of things hoped for, the evidence of the things not seen." It was just a moment that got them mentioned in the Book of Hebrews, for some of them, it was thousands of years ago that they displayed their faith.....some of them not even seeing the promises they were living faithfully for!...they still did it though. I want to be noted. I want to be noted not only for one moment, but as someone who bursts faithful responses daily, hourly, every moment. Although the things they were faithful for were far off and they never got to see them with their earthly eyes, they desired God's Kingdom and strived for it as their home. I want my secured home in heaven to be what I live for. Just last night, I wrote about how I struggle with rejoicing for Jacob's home going to heaven....shame on me..."do not look upon the things of this world" (like holding sweet babies!).....Heaven is my home and that is where my heart should be......C.S. Lewis said "You do not have a soul. You ARE a soul. You have a body." Realize that. Our souls go on for eternity. Our bodies die. What is my soul's desire? Is it for this dying earthly body to have a great life for 80 years and then maybe hope to get to heaven somehow?...NO! It is for this soul to spend an eternity praising the Creator of all things and to spend the time encapsulated in this body serving Him and once this earthly body dies, I am finally home and in the presence of the King of Kings, where Jacob has been since he left the earth!

Lord, give me many moments of faith. Help my soul desire your Kingdom more than the things of this world. If you can wade through all I have done in this world, please find just a moment of faith that pleases You and encourages others to walk by faith that is so worth living for.

Faith Creations, LLC Necklace

I had contacted Heather, owner of Faith Creations, LLC (http://ricetrio.blogspot.com/) and she created this beautiful necklace for me....talk about crafting with meaning! It has my two big earthly boys on the round pendant and Jacob, who resides in Heaven forever in my heart, on the heart shaped pendant. She attached a pearl on the bottom. Everything is just perfect and I love it! Thank you Heather!

Berry Pickin'

Today, Jason, Joshua, Jonathan, my father and I all went to Brown's Berry Patch (http://www.brownsberrypatch.com/) which is a tradition since I was a child. My grandparents used to own a cottage that my great grandfather built and close to there is Brown's so I have been going there since I was little....we have carried on the tradition of pickin' berries with my boys who had been looking forward to this for a while now. They had a great time even in the rain! Then after, we stopped by the cottage my grandparents used to own, introduced ourselves to the current owners and I gave them a bit of history about the home (they appreciated it) and got my picture taken by the old water pump that I used to play at as a baby....my parents have pictures of me as a baby playing by it! It was great!...I love memories and traditions and past-times....precious.

P.S.~ Joshua scored his first goal at soccer today! Great job Buddy!

Summer pictures

So, the boys have been playing baseball and soccer all summer. Here are some pictures of them for baseball...lots of fun! Jonathan is not too keen on the whole fielding thing so he picks flowers and then gets talkin' to by the coach (Dad!)! Summer fun is tough work and makes long summer naps a necessity at times! There are some pictures of my college friend Tiffani with me and the boys too. Enjoy!

Hi

Hi there all my blogger friends. I know it's been quite a while since you have heard from me or Jason....lots going on. It actually has felt good not to be on the computer....no offense to all of our blogger friends but it is nice to take a vacation from it. It wasn't intentional....it just kind of happened.

So, I had another amazing gift from Jacob the other day. Kim Summons (http://marygracesummons.blogspot.com/) contacted me the other day with news of another family affected by Trisomy 18. Little Jonathan was born on July 11th and, to every one's surprise, was brought home on the 14th to live his precious life at home. His parents were not prepared to bring him home but so excited to have the opportunity to do so. Kim contacted me because unlike so many other families affected by T18, God had numbered Jonathan's life with so many more days than statistics entertain and thus the stresses caring for a terminally ill baby....Jonathan's mother and I have this in common. Please pray for Jonathan and his family. His heart is working very hard. He was sent home with no monitors which in my view is a blessing....we got so fed up with all the beeping and wondering if they were accurate and such so we ended up getting rid of them anyways. His respiratory rate fluctuates and at times he seems to be panting. I just am so blessed that Jacob has opened another door for me to reach out to another mother. I was able to talk to his mother for about 40 minutes and just familiarize ourselves with each other....we knew nothing of each other prior. It was great. Please pray for a peace for them, pray they cherish every moment, pray Jonathan has a life full of "living" as opposed to the world's perceptive of T18 baby's being incompatible with life.......(poppy-cock!).

A dear friend of mine from college came into town last weekend and we got to visit for a few days.....it was so great to see her and hug her! She has been someone so dear to my heart since I laid eyes on her 9 years ago and it just was great to share some of Jacob with her and have her see a bit of our lives now....it has been a while since we last saw each other and after she heard of Jacob's passing she had to just come and be with me.....it was something I needed but would never ask for not realizing how much I actually needed it!

I camped out with the boys the other night....it was great! We set the tent up in the back part of the yard near the fire pit, brought some cards out, flashlights and books and just the three of us laid there and enjoyed an evening in our own beautiful backyard. One of the cutest things I hope to remember happened....Joshua awoke at 5:30am because he had to go to the bathroom. So, having those convenient parts, he went outside the tent, walked over to the tree line and releived himself. As he was doing so, he gazed up into the sky and saw the sun just beginning to rise, the crescent moon still bright as ever and the stars glowing magnificently and he said, "Wow.....it's beautiful!" I love it!.... something only a little boy could do!

So as I laid there with my two boys here on earth, I enjoyed the moment....it was beautiful.....the sound of the insects chirping, the site of a sparkling starry cloudless night.....priceless. I soaked it in....but that feeling I gained on May 31st sunk in so hard.....the feeling of someone missing. My Jacob. This feeling resides in me always. I am a mother of 3 boys and although I treasure such a wonderful night with my two sweet boys, my third, the sweetest of them all, was not here. I tried to look at the stars and feel comforted by the fact that although I am in awe of this magnificent creation of the universe, Jacob is in the presence of it's Creator.... but my awe fell short and my selfishness kicked in and I still want him. Our earthly flesh is so selfish and as a mother who misses her baby more than ever before, I have a terrible time rejoicing for Jacob's healing. It is just something that is not natural.....by nature I am a selfish sinner who cannot get past my empty arms to be grounded in the fact that my baby boy now resides in a place where he does not desire or miss or hurt or have a feeding tube or bleed or cry or....need his mother. He has everything he needs....his Savior. Sin, my selfishness, separates me from my relationship with my Savior and my realization that HE is all I need....so much so that I cannot fathom the thought of what those in Heaven are experiencing right now.....I am too wrapped up in my empty arms. I am still taking in precious moments, but last night and today, I just fell short of rejoicing that he is in heaven.....because that means that he is not here with me.....selfish, I know.....but true.

I am well though. I struggle with things here and there but I am well. I feel the Lord holding me and guiding me through these tough times. I praise Him for all He has given me and draw closer to Him when I struggle to praise Him. It is a magnificent journey full of mountains and valleys. I am enjoying the journey and the One who guides it....I am learning so much and growing.

So, there is a very brief update. Please remember to pray for Little Jonathan....I will be contacting his mother by phone and possibly email so I will update you all once there is more info on things.

A Beautful Journey

I got in the car this morning setting out on yet another journey outside my comfort zone. I drove fast on the country roads listening to Bethany Dillan anticipating what my day would hold.....embracing a new friend or being kidnapped by someone I met on the internet?!?! J/K! I was on my way to meet yet another mother who has experienced a loss. It is funny how God knit us together but the trail was perfect and all we had in common was that Trisomy 18 had taken our babies from our arms much too quickly. Dear Lisa lost her baby girl just under 5 years ago. I found out a month ago that Lisa had quietly followed Jacob's story, cheering on his every victory and shattering with his every set back.....she knew his blog so well....and that just encourages me so much to have the love of others even from afar. Up until Jacob's passing, our stories were so different. While Jacob was here, all we had in common was that we both had babies with Trisomy 18. But then, May 31st, our stories collided. I entered into the world of a grieving mother and now we had everything in common. We now viewed life through the same spectacles she had worm for 5 years prior. She now had every reason to contact me and she did. Oh, I am so thankful for our babies bringing us together. Lisa has a loving husband, beautiful children, supportive friends, family and church family. But you all know, that there is nothing like being around someone who 'just gets it." Lisa didn't have 7 other mothers to travel to Atlanta with, she didn't have bloggers to hold her up with encouraging words, she didn't have the internet world to let her know she was not alone....that others have gone through it and live to share their baby's stories. You know what she did have and still does? A Savior. That is who she clung to. That is who made her whole again. That is who continues to walk her through her walk of grief. She is a hero in this journey called grieving. She has done it hand and hand with the Savior and she is so beautiful because of it. She is ok. Her baby is a part of her family today just as much as she was 5 years ago....she has touched lives from Heaven. Lisa is a beautiful testimony to God's perfect parenting....God our Father, gives us things that we just cannot see why it is best for us. But He does. Lisa is my big sister....she has the same Daddy who chose to parent us in a similar fashion and only He could see the beautiful connection that would be the only earthly way to bring us together to walk this path and encourage each other as sisters should do. I was honored to flip through the pictures of her beautiful Hannah Rose.....Lisa and David held her for 9 hours and shared her with there family and friends until she had to give her back to Jesus. Regardless of our different stories, we experience similar struggles along the way and our emotions get the best of us for similar reasons. As we sat in a restaurant in Rochester and talked for hours (our poor server just wanted to go home!) we just talked like old friends. We laughed, we teared up, we stopped a few strangers to take our picture in Wegman's parking lot....we were sisters in the Lord. There were things that we "just got" and didn't need any explanation because of what united us. We knew just what the other was talking about. We understood each other. God has united us through brokenness. Thank God for Jacob Ryan and Hannah Rose....they are united in heaven together in the arms of our Savior. Their mommies unite as testimonies of God's true joy.... over pancakes, bacon, eggs, biscuits and lemonade.....oh, how our earthly lives pale in comparison to what our babies have right this very instant! I can thank God for grief. It is a beautiful journey that has so many wonderful surprises....you wouldn't think it did.....but it does. That is what has brought me a new dear friend. I love you Lisa!

Deeper Still: A Divine Appointment Indeed

My dear sweet friend Emily (mother of Miller Grace) has been given an amazing opportunity to share her story of our Atlanta/Deeper Still trip on the actual Deeper Still Blog. It is an awesome entry and just a true blessing....Emily sure can write. Please visit the link below and read her account....it may only be up for a limited time so do not wait for this blessing! The entry is called "Deeper Still: A Divine Appointment Indeed"

http://blogs.lifeway.com/blog/deeperstill/2008/07/deeper_still_a_divine_appointm.html

Jacob's 6 month birthday

Thank you all for your prayers....14ths of the month have a whole new meaning . Yesterday (Jacob's 6 month birthday) was a beautiful day. One thing I miss is being able to feel that 5-6 pound baby boy in my arms and really see how small he was. So guess what I did on his 6 month birthday??? I went to a friend's house who delivered twin girls 2 weeks prior and I held not one but two babies on my left shoulder. Maddie was over 4 pounds and Kyle was in the 5 pound range (I think...unless I've mixed them up again!). No, it wasn't my baby boy, and I didn't want to feel like it was.....it just felt great to hold those tiny bodies in Jacob's spot....they almost fit as good as he did :) It wasn't tough to do....they weren't mine and it didn't trigger too many things....just one time when Maddie stopped breathing a second (like all babies do but when your baby has apnea, it is something you notice more frequently).....crazy what you will never forget. It was funny to handle them.....my cousin was there and she observed me and the baby's mother passing them back and forth holding one in each hand....it is funny how you handle tiny babies when you are used to it....people are so afraid of them but it was just ingrained in me to handle them this way....funny....Jacob has taught me so much and it is great to see it come out in these neat opportunities.

But it was a beautiful day with those tiny girls....so sweet....so new....

thank you all for your prayers......times have been good. I am amazed at how busy I am but yet my mind is always with my baby boy.

I took all Jacob's clothing to my friend's mother who is going to make a quilt out of them....we have had this planned for a while. I had packed them up a while ago but pulling them all out again to show her some of them triggered some panicky feelings. I don't know why I would keep them and I don't want to....it's just that my baby boy was in them and he was so small and seeing the size of the outfits just reminded me of so much. It's not the clothes I miss, it's him. weird emotions.

Today we went out on a family friend's boat in the Niagara River. It was so much fun with the boys. They just loved it! They drove the boat a bit and they even tubed!....Joshua did it twice with Jason and then once on his own.....Jonathan did it for about 30 seconds and then had enough!....maybe next year. It was just so much fun seeing two of my sweet baby boy's smiles reach ear to ear with the wind in their hair and the blue sky above and the water splashing around....it was one of those moments you just treasure.....there is a One true God and He created everything and it is beautiful.

Touching us from Heaven.....

Hi there. This is really cool. You'll just have to go and read this blog entry for your self. Michelle Hicks works for Lifeway (coordinators of the event) Deeper Still Conference me and some of "my mommy friends" went to in Atlanta. Michelle escorted us back stage, prayed for us, and spent time with us and Beth Moore and Amanda Jones. Our babies continue to touch the lives of others in more ways than I can imagine....they live on....they really do.

Go here:

http://blogs.lifeway.com/blog/deeperstill/

(The entry is "People you Meet"...it was the most recent one but she may have updated it since.)

Very cool. Thank you Jacob. Thank you Jesus.

My Tattoo

So I survived! ...and I didn't pass out or cry or wince....
It really wasn't bad for all you guys out there who siked me out. I love how it turned out.....it's perfect!
I just love having his footprint on my foot....inside my heart I know that every step I take, Jacob is here with me and now I have it on the outside too ..... so sweet. There are lots of reason why I wanted this tattoo but one of them was so that people would ask about him. As I had said before, when I had Jacob with me, every where I went people would ask about him. Now I have some way for people to ask about him even though he is gone. AND IT ALREADY WORKED! As I was getting it done, another tattoo artist came in and asked how old my child was and I got to share with him some of Jacob's story. Then he shared with me that he had a baby brother Jacob who passed away before he turned one. It worked even before it was done and ministered to someone. I just love it. Thanks Bob!

Children are a blessing...

So last night I was sitting at my table just after putting the boys to bed. I was, once again, scrolling through the blog looking at Jacob. I was reading his post on day 138 and the last thing he said was "have a great last day of May." Boy was that rough to read! So, my mind started to wonder, I could feel the build up of tears all week long and they just never came but then one tear fell....and you know what happens when one tear falls.....they all just come streaming down! So, Joshua hears me crying. He comes out of his room, and stands at the head chair and asks me what was wrong. I told him that I just missed "Jakey". Wanna know what he said?...he said "Mom, it's ok to be sad, I miss him too. But it won't be long until we see him again." Um, was that my 5 year old that just said that?!?! He curled into my lap, hugged me and comforted me with the Truth....just sit and take that in for a moment and be amazed at what God is doing in the life of my 5 year old. Wow.

Children are a blessing and a gift from the LORD. Psalm 127:3

AMEN!

Was I a mess. No...just sad. He totally understood that it was ok to miss Jacob and that Mommy was not discontent with the situation. He sees God's Hand in all this and that God is good and He loves us and knows what is best for us. It is beautiful to be a part of. It is beautiful to see God using Jacob to show his big brother's the love of our Heavenly Father....real Truth. Just...wow.

Our Anniversary Weekend

July 1st was our 8th wedding anniversary. Since I had to work that night since I had no vacation time left we decided to celebrate on the weekend. Of course on Friday night we were out late with friends at the fireworks display. It was wonderful to watch the boys eyes and faces light up when the fireworks exploded overhead. Joshua laid on the ground saying, "This is awesome" "I love that one" "oooohh!" It was a late night but a good one. Needless to say the boys didn't wake up in time for baseball on Saturday. They did enjoy their time with Ms. Julie the art therapist though!
Here's a picture that one of the boys took of us before we headed to dinner. Aren't they great photographers?!?! We went to Harry's Harbor for a nice anniversary dinner where we sat out on the deck in the beautiful sun and enjoyed the river. The boys enjoyed playing with their cousin Alyssa all night while we went to dinner and then to the show. I had bought Karen tickets to see Wicked for her birthday. We thoroughly enjoyed the show. It was great!

I'm still amazed at how everything in life is now viewed through the prizm of Jacob. Even during the show I was reminded of him when they were talking about how Elphaba was born different (green in her case!). How everyone looked at her differently and how she was special. Much like our little Jacob. I was supposed to have had to find someone to watch him for our date night.... at least that's what I thought 2 months ago when I bought the tickets. Who was I kidding? Karen would never have left him for 3 hours! Even she was thinking about how she would have had to sit on an aisle in case he made any noise in her lap or on her shoulder. But God had other plans. And they are good.
Here's the lyrics to the final duet of the musical ("For Good"). I can't help but think of Jacob and our situation.
"I've heard it said
That people come into our lives for a reason
Bringing something we must learn
And we are led
To those who help us most to grow
If we let them
And we help them in return
Well, I don't know if I believe that's true
But I know I'm who I am today
Because I knew you

Like a comet pulled from orbit
As it passes a sun
Like a stream that meets a boulder
Halfway through the wood
Who can say if I've been changed for the better?
But because I knew you
I have been changed for good

It well may be
That we will never meet again
In this lifetime
So let me say before we part
So much of me
Is made of what I learned from you
You'll be with me
Like a handprint on my heart
And now whatever way our stories end
I know you have re-written mine
By being my friend...Like a ship blown from its mooring
By a wind off the sea
Like a seed dropped by a skybird
In a distant wood
Who can say if I've been changed for the better?
But because I knew you
Because I knew you
I have been changed for good"

Another Tattoo?!?!?!?

Here is my sister Julianne's tattoo. It is on the inside of her leg just above her ankle. The balloons represent the color balloons we released at his service, the blocks have his initials J-R-F on the front of them on one side and 1-3-8 on the other side representing his 138 days here with us. He is going to be the most tattooed kid!

I go Tuesday for mine!....I am getting his right foot print on top of my right foot....it won't hurt!>...once I've passed out! A little bit of physical pain to have an outward symbol of Jacob.....

He grew up

I get these urges to scroll through the blog and look at pictures of Jacob and read some of what "he said." I haven't forgotten. I just miss him. As I look through the pictures, my chest hurts and I fight the tears. He was the sweetest baby ever. But compare the earlier posts to the later. Wow did he get big! It's all relative.

Yes he was small but he was a giant in so many ways. He grew up so much in those 138 days.
When he came home from the hospital he was just 3 pounds 9 ounces (he was born at 3 lbs. 14 oz). In his last month, he tangoed with 6 pounds.....that is a lot of growing.
Jacob's facial hair took a while to come in......no, not mustaches and stuff.....at birth and for a while after, he didn't have any eyebrows or eye lashes. They grew in gradually and he had quite a few long lashes as well as eye brows....long lashes run in our family...look at Joshua & Jonathan's lashes as well as Jason's!
He always had hair but it became more full and longer.
When we first brought him home, he was so fragile and his apnea and syanotic spells were frequent.....although he had them as he got bigger, the effect they had was less prominent.....he recovered just fine with the exception of day 120 and his final day, day 138.
He went from this pathetic teeny tiny cry that would last a moment to crying for 30 minutes straight while in his car seat!
He grew out of the super tiny diapers only the NICU had and regularly wore preemie size diapers and even wore size ones when he was poopin' up a storm. He would make my absolute favorite face....his eyes would cross, his lips would become an O and he would clench his fists and push them together (his 3 month pictures posted on April 15th when he is in his navy/gray striped outfit.....oh I love it).....he grew out of that face.....he no longer did it.
His fists were so tight when he came home that it hurt him when you stretched them out....he grew into allowing us to play with his tiny hands and massage them and just hold them.....he even held things once placed in his grip and relaxed his hands regularly.
When he came home, he was taking 27 mls (30 mls is an ounce) and, although he jumped around a bit with a few set backs around day 120, he was over 60 mls consistently for a while even getting in the 70s.
He went from being fed every 3 hours to being fed every 4 and at night he would sleep longer spouts (sometimes!).

Things he never grew out of: preemie outfits, being held, black and white toys, his toes would curl over your thumb tip if you put it on the bottom of his foot, his nose would scrunch up when I put mine to his, his Mother's touch, his Daddy's arms, his brother's love and his Heavenly Father's plans.

He was strong. He was big. He grew up. He has placed a giant stamp on this world and has stolen my heart. He is bigger than I can ever imagine being. He was so big, that he only needed 138 days to make his lifelong imprint. He not only grew, he towered and his shadow remains.

I just thank him for sticking around and trucking through this crazy sinful world, just to be loved for a while, grow up and become part of this family who is forever changed because of him.

He lived and grew. Not only do babies with Trisomy 18 grow, so do those around them. Trisomy 18 babies live. Trisomy 18 babies ARE compatible with life......they are the richest, most powerful, fullest lives I have ever seen. Moments are lifetimes. They are beautiful.

Ok, so Atlanta....

Ok...So I have had a tough time trying to figure out how in the world I am going to relay my weekend to "all y'all"....I learned that term this weekend from all y'all southern bells. I got on the plane and went to Charlotte, NC to catch another plane to Atlanta at 11:40. As I sat in Charlotte's terminal, the time of my departure kept being postponed due to mechanical difficulties on the plane...argggg!....now I was the last of the 8 women to be coming in and they were waiting for me at the airport so I didn't want to hold up our evening. We finally got off the ground at 2:00 (in the mean time I ended up sitting next to Reverend Phillip and we talked the entire time about the great things God has done through my life and others using Jacob....coincedence?...I think not!) and I got into Atlanta. Now the Atlanta airport is no small airport....I have to get on the tram thing and here I am all nerved up and I have no idea who I am even looking for to pick me up! So, I come up the stairs and calling my name there is Emily (mother of Miller Grace http://emily0305.blogspot.com/)... the person who made it even possible for me to go on the trip) and Yvette (mother of Tristan http://tristanasher.blogspot.com/) who planned the trip in detail (21 minutes!...I love you Yvette!). They took me to the table where they were all eating lunch. There sat the other 5 mothers:

Angie (mother of Poppy Joy http://poppyjoy.blogspot.com/)

Kristy (mother of Isaac & Asher http://babybolte.blogspot.com/)

Chrissy (mother of Eva Janette http://evajanette.blogspot.com/)

Kenzie (mother of Maddox http://thestanfieldjourney.blogspot.com/)

Kim (mother of Mary Grace http://marygracesummons.blogspot.com/)

What did I say?...nothing profound....no condolences took place.....it wasn't needed....there is complete comfort in just knowing that you are understood because they are there going through it too.....no words can comfort like that, we just sat together and ate and talked about our travels.....like we knew each other from the past and were getting together to reunite. And the weekend continued just like that....comfortable and no awkward feelings. It was like we've known each other for years. When I got to the car to head for the conference, Emily had t-shirts made for our group that had all 9 baby's names and their total amount of time spent here on earth in the order of their passing (the picture is of us from the back walking to the conference)....we wore them and they did not go unnoticed....some people just asked us about them and others knew just who we were because they had read about us on the Deeper Still Blog. We found seats on the floor. 19,000 women in one building gathering together, praising God, opening His Word together and digging deeper into our spirits to be refreshed....how can I accurately relay that to you??? Standing in a row with 7 other women who's babies had died this past year yet we are all standing and raising our hands to God praising Him and telling Him about His goodness, His amazingness, thanking Him for His provision and blessing His name....how can I relay that to you so you feel that overwhelming emotion of praising a God who gives and takes away???? Sitting in that same row listening to Priscilla Shrier preach the Word of God from Exodus 19 about how God invited the Israelites into the wilderness and how He takes us through our wildernesses to see and hear Him and He took them/takes us there by divine invitation so that we can be brought face to face with God and although they/we don't want to be there in that wilderness we are there to see and hear God in a way we have never before and couldn't without that wilderness....how can I relay that presence of the Holy Spirit leading her message right to our hearts as we wonder the wilderness of losing our babies??? She said how God chose the wilderness for His people because it serves His purpose...no one wants the wilderness but we must press on to know Him! She paralleled a mother Eagle rustling her nest and stirring things up to get her baby bird out of there to spread it's wings and sour into the air and if her baby begins to fall, she is right beside it ready to help. God allows things to get rustled up, and although uncomfortable it serves the purpose to get us out of our nest and into the beauty of His purpose and as we soar through the air, He is there right beside the entire time and ready to catch us if we fall. Her teaching sums up my life since October 3rd when we found out about Jacob's heart condition in the womb. It has been uncomfortable and unfamiliar but I have NEVER ONCE doubted my Father's Hand comforting and guiding me through this time and only now, after months of wilderness I can spread my wings and soar and experience life more fully with Him by my side when things get hard and I miss my baby boy. His presence is so evident. I have experienced Him more fully because of this wilderness. THANK YOU LORD JESUS! Thank you for my baby Jacob who was such a powerful tool and has brought me closer to you. I lack the right words to express myself and how great it is to have these words Priscilla shared with us to parallel this wilderness I am in right now and evaluate all that is really happening. Beautiful.

After the conference we headed to the hotel for some pizza and girl-talk. Now, you all know I have been dying to have girl talk.....well there was no lack of that! I got 45 minutes of sleep for the entire night!!!!....and that was more than some! We just chatted and then as other retired, it was just me, Emily and Kim up. I am not sure how we even got onto certain subjects of things but we just talked and talked all night. It was strange....here I am, in a hotel room, with no reservation about what I am saying or who I am sleeping next to...complete comfort. So, then I said some things....things I have NEVER said......things that I have typed to you all about Jacob's passing but these words have never actually rolled off my tongue, out of my mouth to be audibly heard by those in the room. I sobbed. I sobbed in the arms of two of the most beautiful women I have ever met who, although they knew very little about me, they know more of my life now than anyone else could because they were there. They held their babies dead limp bodies. They kissed them for the last time. They arranged a funeral for them. They are praising God for the joy that comes through the storms. They are forever changed because of their beautiful babies they long to hold and will gaze upon them again only in the presence of Jesus. They not only wrapped their arms around me and held me, they comforted me like NO ONE could. How healing.

After our 45 minute night sleep, we headed to the conference. Saturday, June 28th. Miller Grace's (Emily's baby girl) one year anniversary of meeting Jesus face to face. Also, 4 weeks since Jacob's passing. Now, Emily and I found it very crazy how similar we are....we are very compatible and have similar ways of expressing ourselves and similar ways of reading others (it's hard to explain). So here we were, one year/four weeks after our baby's passing, holding each others hands, raising them up in pure whole hearted worship, then staring each other face to face and commissioning each other to live a life "deeper still." How beautifully orchestrated. "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11. I thank God for His plans. I thank Him for His plans of blessing us with our babies as not to harm us but to give us hope and a future. I thank Him for so clearly spelling it out for me and giving me the Bible to strengthen and see how God's Words are so relevant today as it was and will always be.

Kay Arthur and Beth Moore spoke (both were sooooo great...even though I was sooooo tired!) and then after the conference, one of the conference coordinators came and escorted us 8 women out of the 19,000 back stage and had us wait in a room. Beth Moore came back and just loved on us. She looked us each in the eyes and hugged us, asked us how she can pray for us, called us giants of faith, and had us kneel down and she prayed over us, touching each of us and lifting up our requests and interceding on our behalf. She cared for us. So sweet. And here is Emily, on her baby girls death anniversary, hugging, posing with and getting prayed over by one of her heroes of the faith.......what a beautiful testimony of God's goodness and granting our desires.

We headed to dinner and then back to the hotel to go swimming and work on some crafts. We each bought a dish and smashed it and then collected a piece from each other and we are to make something out of it. I am not sure what it all stood for but, man, did I love smashing things! Emily didn't want to do hers so I did it and then any time someone needed a piece smashed again, I was right there to smash it. Some ladies are gluing the pieces to a picture frame and some just made clumps of broken pieces....I took each piece and glued them together and when I looked at it, I saw each piece that represented these broken families but glued together we produced a masterpiece that blesses others with our brokenness. Then we made "mats" that represented the crippled man who was brought by his friends to Jesus through a crowd and he was lowered through the roof (Luke 5:17-20). Our craft mat represented the mat and we are to bring each other the Jesus when one is crippled and cannot carry their own mat to Him. We put our baby's name in the middle and then everyone signed their baby's name(s) and their name around it. We then just girl talked the entire night again. Everyone pooped out in our room except Kim and I. Kim's baby girl, Mary Grace, and Jacob share the same birthday and we just talked about how amazingly different our stories are but yet we are all just knitted together with different similarities.

So we finally got to bed for about 2 hours and then the morning of good-byes began. Emily and I slept through breakfast not realizing Angie was leaving right from there (SORRY ANGIE!...we love you!) and then we started dwindling.....our group of 8 was down to 7, then 6, then 5, then 4....we headed to the airport together and then just Emily and I were left. Then I said good bye to her. That was so hard. The woman who was used of God to get me there to experience the weekend of a lifetime....who I cannot just go out to lunch with whenever, who I love deeper than can be explained, who I bonded with from the instant we were in contact, who has allowed my baby boy into her heart to enable her to love again, who is a beautiful vessel....I hugged her and held her tight and cried in her arms. I walked through the airport overwhelmed by what had happened that weekend. Every single one of these women touched my soul. Every one, although we came in contact in different ways, left such a huge imprint on my heart. Every one who's womb carried their babies and their arms are left empty and aching......they are just beautiful women who love Jesus and regardless of circumstances, finds joy in the one true living God. How can you walk away from a weekend like that without tears. How can I not be on the plane randomly having my eyes well up with tears of amazement and thanks. How can I possibly accurately relay it to you. These words do no justice to this weekend. There are no words to accurately relay it....I have left so much out. But it's not for you....it is our gift from God. I pray you never have to experience God in the ways we have....but I do pray that when you are in the wilderness, you will find true joy in it and sit there to hear and see our God like you never have before.

I will update on the trip soon!

Hello everyone. I now officially have my own identity here on this blog!...I no longer have to sign in as Jason or Jacob! So, the trip was great (understatment) but we all decided to wait to share all the photos and such amoung us so that everyone has access to them all and can update whatever we want on our blogs....so the sharing is taking place and the blogging will soon begin. It may take me a while to try and relay even a glimpse of the great things God has done over this weekend.....you all know I am not quick with accurate words so it may take me some time and a few different ways with help from Jason for photos and such....and you REALLY want to see the photos! So, know that I was not kidnapped and that I had a great time and I will share the details once I get the alone time to do it.

Check out our new Guestbook!

So many of you out there in blogland have become very dear to our hearts and we would love to be able to put a face with the name! Please sign the guestbook and add photos! You won't show up immediately because it will be sent to us for approval ... but we'll try and stay on top of it! :)

Four Weeks Later

Karen called me from Atlanta this evening to let me know what a wonderful time that she's having. Her and the girls are being treated like VIP's and she was heading off to meet Beth Moore personally after she hung up the phone with me. Somewhere in the conversation she mentioned that today was the four week anniversary of Jacob's passing. Funny... I'm so out of it... trying to do everything for the boys and running here and there for baseball and playdates and such that I hadn't even given any thought to the day. So it's been four weeks.... some of you have probably wondered what we've been up to. Well, other than planning a trip to Atlanta for Karen, last week my sister and her two daughters flew in from Texas along with my folks for a week visit. Just about everyday was filled with trips to the playhouse, swinging, painting in the sandbox and of course freezypops!




No fun in the pool though since it was "too cold" for the Texans! As is always the case, as soon as the family from out of town showed up the temperature dropped 20 degrees! (and went right back up as soon as they were gone!) That's ok though because it didn't stop us from having fun! Joshua and Jonathan loved taking care of and playing with their cousins and even let them borrow some dress up clothes!
The girls love their "Joshy" and "Johnny" but they also love their Aunt Karen who bought them their first kit of makeup! What fun they had putting on lipstick and painting up their toes and fingernails. Which of course would later in the week lead to Joshua and Jonathan asking Mommy to paint their nails as well! (YUCK!)
All in all, after all the trips to Chuck E Cheese and Great Nana and Papa's house and restaurants and Aunt Josie's house we had a great visit and just needed a day or two to relax before Karen headed out of town. So that's what we've been up to. Sorry for not keeping you all posted! :) There's a few things that we've meant to get on the blog for you to see as well. We've received so many thoughtful cards and gifts that we could never put them all on but a few caught our eye and we knew you all would appreciate them as well. Someone gave us this cute picture frame the night of the memorial service.

Someone else sent us this in the mail a couple of days ago.
And I thought some of you might be interested in seeing his memorial card that was at the memorial service as well... not bad for a funeral home design!

There's also a video someone made and sent to us that is now located on the sidebar as "Jacob Memorial DVD Video" which was kinda kewl... even though it was set to country music! :) Please don't be offended if we don't specifically mention you or your gift - we appreciate you all!
I was driving home from work the other night and I couldn't help but be amazed at how God has used Jacob's life to touch so many people's hearts and lives. People that I haven't seen or spoken with in over half my life time have interacted with our family on some level (even if it was just online) and have been affected. Good friends from my past have contacted me. Complete strangers have fallen in love with Jacob and our family. Even close friends have become closer as a result of Jacob's short life here with us. And I can't help but think of Joseph in the Bible. Some of you may know the story... basically Joseph gets sold into slavery by his own brothers... gets thrown into jail for refusing to sleep with his master's wife... gets forgotten in jail for who knows how long and eventually God uses him to interpret the Pharaoh's dream and thus he becomes one of the most powerful people in all of Egypt. As God would have it, his brothers end up coming to Egypt for food because of a famine and who do they have to bow down before and request it from? Joseph. Once the whole story unfolds and they realize who he is they feel terrible and are afraid for their lives... "His brothers then came and threw themselves down before him. 'We are your slaves,' they said. But Joseph said to them, 'Don't be afraid. Am I in the place of God? You intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.'" (Genesis 50:18-20) I love that line! You meant it for evil, God meant it for good. I doubt that Joseph sat in the pit his brothers threw him into and thought that God had good plans for the pit. Or good plans for him being sold into slavery. Or good plans as a slave. Or good plans for jail. There was probably a lot of lonely sad nights for Joseph where he may have wondered if God had forgotten him. What did he do to deserve this? Why? Those all would have been fair questions, yet later in life he was able to process everything that God had done to bring his situation full circle and he was able to say "you did it to be evil but God intended it for good."
While I still sit in that cold dark lonely place asking those questions from time to time it's good to see a little bit of what God intended. I don't in anyway believe that we've come full circle... we probably aren't even on the circle yet, but still God is faithful and allows us to see how Jacob's life has impacted us and others around the world. And that scares and excites me to think of what else God intends to do in our lives... and maybe yours! Perhaps Satan intended Jacob's life to defeat us - to be evil - but God intended it for good. Some may see a situation like ours to be terrible - but God intended it to be a blessing.
Isn't God awesome like that? I don't think it's coincidence that this is pretty much the summary statement of the first book of the Bible. Think about it... garden of eden - the serpent and man did a pretty good job of screwing things up - they meant it for evil - but God intended it for good. Genesis 3 He promises one who will come and crush the head of the serpent - who will redeem mankind and put them back in a right relationship with God. Fast forward a couple thousand years and Jesus Christ hangs on a cross. No doubt the serpent and man did a pretty good job screwing that up as well - they meant it for evil - but once again... God intended it for good! I can only continue to hope and trust in the God who loves me and knows what He is doing.

Stuff....no solutions required....just talkin' (from Karen...as if you couldn't tell already!)

Craziness. That describes my last week. Things have been so crazy. My nieces are in town with Jason's family and my boys just love them. So we have been spending as much time as we can with them in the morning before the big nap time crashings. My evenings at the beginning of the week were spent alone....kind of wondering what to do. Then they got busy again....so much so that I have not returned phone calls or said "thank you" to friends for gifts sent in the mail or been able catch up with my sisters. It's not the evenings that are a problem... Late into the night it is tough. I didn't sleep very consistently since January 14th.... and although right after Jacob's passing, I slept through the night from shear exhaustion, now I have a hard time going to bed. It's not that I am not sleepy....I am a sleepy person. But it's just that my routine is so drastically changed that I can't figure out a new routine. There is no longer this little person by my side keeping me so much company. I am a night person. Although sleepy, I can stay up ALL NIGHT talking. Jason CANNOT stand this about me....on the nights we go to bed together (not often because of work stuff), we lay down and cover up, he turns off the light, we kiss each other, say good night and then it happens....everything just starts pouring out of my mouth like a spontaneous volcano eruption (slight exaggeration). It has always been like this....neither of us can get used to the others desires....I want a "girl-talk" time where he pops up out of bed, turns on the light, sits up cross legged and stares at me clinging to my every word ready to join in the conversation and he just wants to go to sleep after the end of a long day and wants me to talk to him at a reasonable hour like the rest of the world. Now, Jacob took a lot out of me but he was my late night "girl-talk" buddy...it was like sleepovers every night! He kept me busy and he told me about his life, I told him about mine.. stories of when I was younger and how I met his Daddy, stories about his brothers....girl-talk. Four and a half months of sleepovers and now, party is over. What do I do now? I DON'T KNOW?!!? I wonder. I have to find something else. The past few nights, I went through Jacob's things and organized his box of things and put things in baggies and folded his laundry and condensed cards and went through unneeded papers.....not quite as great as holding a 5+ pound baby boy on your chest, patting his butt, rubbing his soft hair with your cheek, playing with his beautiful long fingers and telling him stories and listening to his every concern. Solution to the problem?....Nothing. It just is. It's an adjustment. Most things have been going well and I have been doing ok with them....this is tough and there really is no solution...and that is ok because it makes me rely on God as my Comfort. There is no replacement. Jason, my partner united with me through God, is not a replacement and it is not fair to expect him to be one. Here is this ridiculously lonely time in my day that is in need of being filled and who better to fill it than the Creator of Time?!?!?

Next random topic...

Today I went to a wedding shower for some friends of mine from high school. I did not know very many people there but I did end up meeting up with a few girls I knew from high school and met new people. As I was in conversation with one of the new girls, she asked me what I do for a living. I told her I was a mother of 3 boys and began stumbling over my words to try and explain that I have 3 boys- 2 here, one passed- and then it hit me that I had no idea where I wanted to go with the conversation.....she didn't need a detailed overview of the past 6 months of my life but then again, I couldn't just glaze over it either.....so I just blurted out that this was my first time having to try and give an overview of my life since all that has happened. Yet another situation you just cannot prepare for. The one girl I knew from high school knew about my circumstances and very kindly told me that I was doing great...that calmed my feeling of sounding ridiculous... ..she was always a sweet girl.

NEXT!

Forgiveness. Satan sucks. He will do whatever he can to get his filthy mitts on us. Right after we found out about Jacob's terminal condition, both Jason and I recalled a conversation we had with some friends....they were recalling a family who stated that after the loss of their child, they had to forgive people in advance for saying the things they were going to say....there just are people who say things and have no clue how ridiculous it sounds to someone who has just lost a loved one. So Jason and I agreed that we would do the same....we would forgive in advance for the statements that were to come. So where is Satan attacking? Right in this category! But it is very wide spread. On one end, I have statements that were said that I rebuttal in my head and on the other end I have people I haven't heard from and feel as though I should have.....polar opposites and emotionally driven (very unstable). I am not an easily offended person...normally, I am not sensitive to such statements (I usually am the one having to bite my tongue or sticking my foot in my mouth!)....so why is this all of a sudden a sore spot???? Because I made a commitment to be Christ-like and forgive before the offenses were committed.....Satan observed and is now poking at me and trying to get me to take Jacob's beautiful, God-glorifying life and turn it into something that harbors bitterness. I see Satan.....and I will fight with the Holy Spirit that resides in me! He will not destroy my spirit or my testimony and ruin the beauty of Jacob Ryan Fahmer's meaningful life. Please pray specifically in this area for me.

Disclaimer: If you know me and/or are around me and see me frequently, PLEASE do not take my blogging statements and feel you have to walk on egg shells around me or apologize for anything! The very last thing I need is a bunch of people faking in my presence or needing to be comforted because they feel bad.....I am sharing my struggles.....do not feel you can protect me from them by watching what you say or do in my presence. I have to learn. Please allow me to learn and persevere over my struggles....just love me the best you can and do not fear my reactions. Ok? Thanks!

P.S.~ I still smell like maple syrup!....it's been 3 weeks!

More Fanmail - yeah!

Megan writes, "Well, I finally found time to send you some pictures of us being loyal Jacob fans! Here are Finn & Ella being proud supporters! This was not an easy feat trying to get them to stay still AND not fall off the Lounge chair! There is also a picture of me b/c I had to get in there and stop the craziness!

I hope you got my card. I don't know what else to say except that you are both exceptionally strong people and I truly believe God only gives you what you can handle. I think we all know He works in strange ways and is very hard to understand sometimes, but He is always there for us. I am glad you are still blogging, if not for you, but for us too. I know I logged on everyday to get my daily Jacob fix. I miss that tremendously. I know your other 1200 a day visitors miss that too! So, go on as long as you can. Like you said the brain barf is gonna take a long time to all come out! I commend you for how honest you are and my heart breaks for you daily. I haven't had a dry eye either in a while. From one mother to another, I am sending you a big hug."

More Q & A

Q: Why were the balloons you released at the Celebration of Life service black, white and yellow?
A: Jacob loved black and white....he would lay under his boppy that had a zebra print arch over it and just stare for long amounts of time. He loved the contrast of black and white or light and dark. Jonathan always said that "yellow is Jacob's favorite color" so there you have yellow, black and white.

Q: Why did you name him Jacob?
A: I didn't. Joshua did. We had been told for a few weeks that he was a girl. So we had "her" name picked out. Turns out we just had a lazy tech who couldn't be bothered with silly things like reproductive organs! On October 3rd, I not only found out about Jacob's heart condition but we also found out he was a boy...different tech. That night, I told the boys we needed a name for our little man and Joshua just blurted out, "I want to call him Jacob." so we did. It is funny because Joshua's name was almost Jacob.

Q: What are we going to do with Jacob's remains?
A: First thing we are going to do is get them in the same urn!....when he was cremated, the boys had some things they wanted with him and the ashes left were too many for the urn they had offered so they put his remains in 2. The funeral home didn't have the next size so Saturday we are doing catalog shopping for an appropriate size urn....I bet that's not on your "to-do"list. Then what are we going to do with them? Keep them here with us right now. We had his body cremated because I just couldn't stand the thought of his sweet tiny body being alone, in the ground, cold and yucky.....I just have this sad picture in my mind of him in the ground and it just would drive me crazy to have him there and not be able to rub his fuzzy hair, touch his perfect nose, hold his beautiful hand or touch his "pea-pod perfect" toes. And the thought of us moving and leaving him here just didn't settle well with me either. Both options suck....bury or burn. I know it is just his body but I just couldn't commit to anything. So, we decided to cremate and keep the remains here with us until we can figure out what to do. A few thoughts are for them to be buried when another member of the family passes or add his remains to the cremated remains of Jason or me. We are just not there yet. Lovely subject.

Q: Karen, are you going to get a tattoo too?
A: Probably. I just have a lot of ideas....I don't want to come out of the tattoo parlor with no natural skin left. I want his footprint somewhere that others will see it and ask.....Jacob drew people to himself and they just asked. But Jason said I can't do it on my forehead j/k. A dear new friend of mine has her baby girl's foot print tattooed on top of her foot.....I really like that....My friend would have to give me permission to steal her marvelous idea. I also have tossed around "138 days" "Psalm 27:14" and "sunshines" since I sang "You are my sunshine" to him and my other boys....maybe later for that....right now it's about Jacob. We shall see. It's tough deciding what you want on your body for life....Jacob has already given me a scar I am honored to wear on my tummy but I want something for others to see and ask....not many will see that tummy scar....believe me, it's for your own safety. I'll let you know if I do get something.

Lots More Brain Barf....this is gunna take a while....it's more like a flu!

Hi there.....it's Karen (I have to say that because I do not have my own identity on this blogger thing....it's either "Fahmer" or "Baby Jacob" so I go under "Fahmer" since Jacob was the only one who knew his password to blog!)

One thing I fear, is that people will take what they feel a grieving mother should be doing or saying and analyze my life to fit this cookie cutter feeling they have. A grieving mother should be on meds, could be starving herself, could be sleeping all the time, could be depressed, could be withdrawn from the world, could be in deep depressing thought all the time, etc. Now, many of you will read this list and say that I am exaggerating but many have this thought what my actions are an indication of. I have heard many of them, although subtle and just out of concern.....I do not have to explain my every action but just to show you how crazy things can get, allow me to rebuttal some of these concerns that have been very subtly expressed......I have always been a sleepy person, I can sleep at a drop of a dime anywhere anytime....I ALWAYS have been able to (if you know me at all, you know this about me)....so the fact that I sleep in is just because I can; the fact that I take a nap is just because I can; I sit still, I fall asleep....even if it right after sleeping for 12 hours!...I love to sleep! I have two active boys and a busy husband who have so many things under control since I spent the last 4 1/2 months taking care of a baby and now that my baby job is over, they still have everything under control and that means I see more opportunity to sleep. Anyone would sleep more after being up for 4 1/2 months! Weight loss....You could turn this into the next article on the front page of the paper OR you can take into consideration the fact that I sat on my butt with a baby in my arms for 4 1/2 months blogging?!?! Now that I am up and going and I no longer have gallons of milk hanging from my chest, I look a bit thinner than I did 2 weeks ago. So, all the stereotypes and such.......THROW IT OUT THE WINDOW! Can these things become a sin in my life and become a stumbling block....sure...Satan is at work. But I just want to point out that not everything that is happening is an indication that I am dealing with things in an adverse way. I know it is love and support that is coming from people who do not live with me..... just take note. Ok, end of note :)

Today was a crazy weather day. I know not everything in life is a representation or parallel to real life but today, it seemed as though the weather paralleled life. It was a stormy rainy night and then a beautiful morning. Then it stormed again. Then the sun was out. Then the sun was out but it was raining without a cloud in the sky. Then it thundered and rained like crazy. Then the sun beamed. Then it stormed and hailed for like 10 minutes. Then there was a beautiful sunset. Then it was night and stormed more. Life. Sunshine, storms, rain, unexpected hail, all jammed into one day just a few moments for each expression.

"It was a stormy rainy night and then a beautiful morning": long trials that you don't understand until you are through them and you can see the Son shine after.
"Then it stormed again": you've been through it before so you strap on your helmet and learn what you need to knowing God is faithful.
"Then the sun was out": mission accomplished. Lesson learned.
"Then the sun was out but it was raining without a cloud in the sky": although things are ok in life, you are hit with these thoughts and fears in your mind. Satan's attacks.
"Then it thundered and rained like crazy": it's real. It actually happened to you....what could have never happened to you, is actually happening.
"Then the sun beamed": you embrace it and actually enjoy it and wouldn't change it.
"Then it stormed and hailed for like 10 minutes": something so rare, that usually only lasts moments, lasted for longer than anyone predicted.
"Then there was a beautiful sunset": gracefully and beautifully, the Son shines through and shows His magnificence.
"Then it was night and stormed more": you are left with empty arms knowing the Son is there all along, it is just you that is not seeing Him on the other side of the earth.
Life.

Just some thoughts.

In the midst of the crazy weather, both Joshua & Jonathan had beautiful thoughts of their Baby Brother with Jesus. Yesterday, as the gray clouds covered the sky, Joshua said it was like Jacob and Jesus were shadowing us with their hands and he said he saw a really big hand and Jacob's little hand. Today, during all the storms Jonathan said, "Will Jesus and Jacob play bowling forever?"....bowling being the thunder cracking. I love that they think of Jacob up in heaven well and active and enjoying life along side the Savior of the World. They are not sad for their Baby Brother. I love that they can talk about him and verbalize their thoughts of him. They miss him, but they do not weep for him.

So the past few days have been crazy. I have lots on my mind (you couldn't tell could ya?). Saturday was 2 weeks since Jacob's passing AND it was the 14th, his 5 month birthday. Could I find a reason to be sad everyday? Yep. But I don't want to be that way....it just was a hard day. I missed him so much. I sniffed his little outfit that still has his smell on it, I looked over the blog and tried to enjoy "his" writings. I missed him. All these days before had such little significance before Jacob:
Mondays were just the beginning of a busy week; now they remind me of birthdays.
Saturdays were a day of hanging out as a family; now they mark a day of passing.
The 14th was just the 14th (except for September which is Joshua's birthday); now it is a monthly milestone marker.
Jacob has changed the way I think about every day. I pray for the Summons family more specifically on the 14ths because their baby girl not only was born that day (the very same day as Jacob), but she died that very same day. Thank you Jacob, for making me more aware of the needs of other families and allowing me to see that everyday has it's own significance.

Sunday was Father's Day. I was at a loss. I stink at these hallmark holidays anyways, but now, how in the world do you tell a Daddy of 3 boys "Happy Father's day" when there are only 2 boys there to give him hugs and kisses and cards and breakfast in bed?!??! I tried hard but, man was it tough. I am so glad he went and got that tattoo a few days before....it was something new and exciting and all that it stands for.....it helped.

After a family member passes, there are some random things to get used to that you don't think about preparing yourself for....signing cards from your family or taking a "family" photo. What a sad reminder of a loss. Here I am trying to sign a card from our family and everything in me wants to have Jacob's name at the end but who signs cards with dead people's names?!?!?! And family pictures?!?!? There will never again be a complete picture of our family. The suggestion of it makes me scream inside....what can I put in the picture to symbolize that missing family member.

So, to the many who ask "How are you doing?" Well, I have no idea. I am doing well. Processing. Readjusting. Believing God's plan is so big for Jacob and I am just trying to be used by God in the biggest way possible. I refuse to let Jacob's death lead people to believe it had a adverse effect on anyone. It was a beautiful life and now I need to find my niche of communicating his life to others. I know it is about God and his goodness and His Son Jesus Christ. It's just that Jacob made God so much easier to talk about. When I had Jacob with me, everywhere I went, everyone would come to me and ask questions ....he radiated God's love and people would see this different beautiful baby and I could share with them the amazing goodness of the Lord. Now, I no longer carry the physical "amazing tool of God" in my arms. I have to find a way to radiate God's love so that others come up to me and ask questions about what is different about my life that they see beaming from my empty arms. I want to share. I want to tell his story. I want others to believe and be saved. I want Jacob's life to impact eternity. I want to be a tool. I will find it. I am changed and I will show it....in time.

I am soooooo encouraged to read some of the comments of how our story has changed people's lives. There are some comments that you all have not been able to read because the commenter asked for us to keep it private. Reason for this is because of some of the personal content they did not want the world to see. We have respected their wishes but I would like to share the themes as they come up so that it may be of encouragement to you as well. A mother commented about how she aborted her trisomy 18 baby a while back and recently found herself online searching trisomy 18. She came across our blog and after reading about Jacob and seeing his full life, she saw the life that was ended in her womb. Although saddened, this woman was humbled enough to change her way of thinking. It will not bring back that baby but it may save others. How can that not be an encouragement. What is done, is done. Now go and sin no more. Wow. Thank you Lord for using Jacob. You allowed me to carry him, birth him, love him and share him to change the world. Thank you. It is stories like these that just reinforce my thoughts of how perfect Jacob was made.....he was made perfectly to reach others who could relate in some way. There were no mistakes and there is nothing about that Baby Boy I would change.....because if I did, his impact would be less than what God has planned.

Next thought: I am going to Atlanta with now 7 other moms who have lost babies. I don't know how many times I've said it, but it has come out of my mouth a ton of times, "I have no idea what I would say to me" meaning that I have no idea what I would say to a mom who's baby just passed away. Now, I am headed to Atlanta to face 7 of them! I am soooo looking forward to it, but I feel so out of it. They have all been part of this whole blogger thing way before me and it seems they know more about each other and even me than I do them.....it is silly thinking, but it's thinking.

All these thoughts, no solutions....and that is ok. When I think, I "brain barf" as explained before and I do not expect solutions...I just vent....Jason is a problem solver and he is at work so he has no idea I am posting this jumbled mess!!!...there is no denying that this is a jumbled mess so all you bloggers who always comment that "it's not a mess" and "it made sense".....THERE IS NO WAY you're commenting that this time!

Thanks for being there and "holding my hair back."

Jacob Memorial Tattoo

So I went and got a tattoo last night to remember Jacob by. A buddy of mine's soon-to-be brother in law owns a very upscale cool tattoo place called ArtNBody. When my friend explained the situation to him he got us right in and did an excellent job and took good care of me. The tattoo is located right below my left wrist.

What is it?
It's biblical Hebrew and it says (reading from right to left) "ya`aqob beni" or "Jacob, my son." I wanted something permanent that will always remind me of him and will spark conversations with other people about him and what God has done through him.


Why the wrist? Why in Hebrew?
First off, the Hebrew just plain looks kewl! Of course it's also the language that most of the Old Testament was written in. Jacob was named after Jacob son of Isaac from the book of Genesis in the Old Testament so it seems only fitting.

Isaiah 49:13-16 (TLB) says "Sing for joy, O heavens; shout, O earth. Break forth with song, O mountains, for the Lord has comforted his people and will have compassion upon them in their sorrow. Yet they say, 'My Lord deserted us; he has forgotten us.' 'Never! Can a mother forget her little child and not have love for her own son? Yet even if that should be, I will not forget you. See, I have tattooed your name upon my palm, and ever before me is a picture of Jerusalem’s walls in ruins. Soon your rebuilders shall come and chase away all those destroying you."
In these verses Isaiah is recording a dialogue between Israel and God. The people in Jerusalem felt as if God had forgotten them and their city. But God replied that He certainly had not forgotten Israel. He could not possibly do so because He is like a mother to the nation. Furthermore, the nation was inscribed, as it were, on His palms. Therefore whenever He, figuratively speaking, lifts up His hands He sees the nation’s name which reminds Him of her. Interesting isn't that God says that His people are inscribed on His palms? The imagery is clear to those of us who know that Christ hung on the cross by His palms (which history tells us that the wrist was considered part of the palm in Jewish thought and that the Romans hung people on the cross below the wrist bone to avoid the body ripping free from the cross - not to mention that it was prophesied that not a bone of Christ's body would be broken). Isaiah foreshadowed the crucifixion 700 years before Christ! Are we not inscribed on the palms of Christ? He will never forget us, leave us or forsake us. I don't want to forget Jacob. Everyday I will be reminded of him and of the love that God showered on our family through him. Already the boys are interested in it and will continue to remember their brother through this writing on my wrist. Joshua ran in and woke me up this morning and said, "Come on Dad! Wake up! Let me see your tattoo!"

Yes, we're still accepting FANMAIL!

Sorry for the delay in posting them... but we're still looking forward to seeing y'all in your fanclub gear! The VW's write:

Dear Fahmer Family, There is a street near our house by the name of Jacob. Every time I drive by it, I think of your precious Jacob and probably always will. I just wanted to share some thoughts I’ve had about Jacob, his life and your family.

Jacob’s Road

We all have a road to travel throughout our life. None of us know what direction our road will follow, but God does. God has a plan and a purpose for all of us. Some of our roads are smooth. Some of them filled with uncertainty. Some are destined for something so great that we can’t even understand the reason the road turns the way it does. But, God knows! God had a very important purpose in mind and ordained for a very special family to carry it through for Him. He knew that He would be sending a precious baby boy, that would be named Jacob. He chose a wonderful family to care for him on earth. God knew this family would be listening to Him and knew that they would look to Him for guidance in all that they would go through with Jacob. God knew this family would endure extreme heartache, but He also knew they would rely on Him to sustain and that they would fulfill His purpose. Jacob’s road may have been filled with many speed bumps along the way but, more importantly, it was filled with love! God’s love was shown in every mile that Jacob and his family took together. Jacob’s road may have been one short in length, but one tremendously long in the lessons learned. God had an amazing purpose in Jacob and it was fulfilled! Thank you Lord for Jacob and for leading so many on his path! Thank you Lord for his family and the testimony they have provided! May they know the blessing they have been by sharing Jacob’s life and lessons. May You grant them peace, hope, strength and comfort as they continue their road and may their path always be lit by You! I’ve added a couple of pictures of Gavin and I proudly wearing our Jacob fan club shirts and a picture of the street sign with Jacob’s name on it. May God bless your wonderful family! You are, and will continue to be, in our thoughts and prayers!

Some have also inquired about whether or not fanclub gear was still available because they were saving up to buy something cool. We'll keep it available as long as the site will allow us to! I'll try and add a link on the sidebar for easier access!

I'm Goin!

Hello there everyone....it's not like me to comment again so soon but I wanted to update you all on the Deeper Still Conference....so no one else buys the ticket (2 already have!)

I happen to be a Princess of our Heavenly Father (The One True King) and although it seemed as though My Father said "no", I have 6 other princess friends who stamped their feet and pouted to God for me and He sent one of them to me this morning to tell me I could go! I received phone calls and emails about ways to get tickets. One of the moms is taking care of getting the ticket so I booked my flight to Atlanta and I am on my way.

A total of 7 moms.....representing 8 babies.....although my stomach turns that I have this in common with these ladies, I am encouraged in so many different ways.

Because we found out about Jacob after he was born, I haven't had much time to read up on these babies, until now....I knew of them and read posts here an there but never dove into their lives....because they all made themselves known to me through Jacob's' blog and I visited briefly to become mildly familiar with them. But they all know me...they know everything about the last 5 months! And I am excited to learn more about them and where they are now. I am the newest member to this stinky club and I have lots to learn and there will be a pool full of wisdom to draw from. I am exited. Thank you ladies!

Karen

10 days have passed...

Hi everyone...it's Karen.....I was surprised to see we still have 1200+ visitors a day!...you haven't left us!....thanks.

It is kind of weird having you all not know what goes on every day in our home....I miss trying to think from a 4-month-old's perspective.....Jacob sure was funny.....me, not so much.

Last week was preparing for the service Thursday....getting things printed, organized and together.....it was beautiful but lots of work (THANK YOU EVERYONE FOR ALL YOUR SUPPORT!). Friday, Jason and the boys hung out with Jason's family and I went out with some friends who drove in from Delaware and then hung out with my family. Saturday, I went to my cousin's baby shower and then my sister Juli (from FL) came back to my house to visit for a bit before having to leave town. Sunday, we made an attempt for church. We drove there, had some issues with Jonathan and finally got him into his class. Joshua went into his class and the first thing out of one of the other kid's mouth was "I heard your baby brother died." The teachers were chatting and didn't field it for him....it seemed so loud to me and just rang through my ears....I hurt for Joshua but he just trudged through and ignored it. Then as we were on our way to our class, we were stopped at least seven times.....nothing bad, just questions like "How are you doing?" and statements attempting to be encouraging.......our church has been amazing and I do not make these statements to make it sound as though they are at fault.....it was just the first place we have all been as a family while dealing with this all....it could have been any other crowd. It is us, the sensitive and hurting, that magnify everything. I've always said "I don't know what I would say to a mother who just lost her child" so I understand that people don't know what to say and want to support us in some way. But, I was tired. We never did make it to class. I broke in the hall and pleaded with Jason to take me home. He asked if I was sure and I was and he went and got the kids, I canceled our plans for the day an we headed home. I needed to be home with my family....something I hadn't done in a while without craziness. For the next few days, we just hung out as a family, swam in the pool and enjoyed being a family.

So, it's been 10 days since Jacob passed. We've had our ups and downs just as life normally goes but it seems as if there is this super sensitive button....my Jacob button. This button is always triggered....sometimes it is as if someone just bumped it a little bit and then other times it is as if someone smashed their fist on it.....regardless, it is always triggered, tugging on my heart. I have realized that many people's advice to us is that "it gets easier". I am not really sure what this means. My son is gone....there is nothing easy about it. This is hard and there is nothing that is easy about it.....and although time passes, my arms are empty and that is not easy. Monday birthday parties are no more....that is not easy. My nights are no longer on the couch with a snoring 6 pound baby boy.... that is not easy. I sleep at night only to be awakened by my own dreaming of holding my baby boy.....that is not easy. My nursery closet is no longer full of needed feeding tubes, syringes and formula....that is not easy. I have dirty laundry in a basket that after being washed, will never be dirty again....that is not easy. What will get easier? I am a mother of three beautiful children with only two to hold......I do not wish those two away, oh, but how I long to hold all three.....that is not easy. Jacob Ryan was God's tool and has changed me forever.....I don't want it to get easier. I want to learn what God has for me in this season.....so I don't have to repeat any classes. I am changed. As a mother, I hug longer. I stare longer. I spend more time listening. Jacob has given his brothers a better mother.

The struggle for me right now....not to be run by fear. I went to the grocery store today by myself. I haven't been much of anywhere by myself since I drove away from my house 10 days ago leaving behind my 4 boys....I didn't realize the fear that I had inside me. It sucks. That is not me. I am not a fearful person. It is crazy what Satan will play on. He saw me drive away 10 days ago and he saw how I came home to only 3 of my 4 boys.....he seized the moment, contemplated his attack for 10 days and hit me hard as I drove to the store today. He hates the fact that there are people who are brought closer to Christ because of God's Hand in our family. Satan is looking to tear me down though and I am so thankful for the "God View" that God has given me to spot Satan's ploys. Satan wants me to become a hermit unable to reach others and live a beautiful testimony of God's Unfailing Love.....he wants me to fail in the truth that my strength comes from Above. Man, he is good at what he does. But My God, the One who has given me the strength to praise His name through the worst storm, Who now holds my baby boy in His arms, is better at what He does and He will prevail.

I was invited to join 6 other blogger moms who have lost their babies. They are going to the Deeper Still ladies conference in Georgia. As soon as I was invited I was excited about the opportunity not only to be fed the Word by these amazing speakers but also to be hugged by these other mom's who know way too well what I am going through....it just would be so healing. I looked up the tickets.....Sold Out. Did Satan win this battle?...God is in control and those ladies are going to have such a blessed time and God will be glorified.....so no Satan is a big loser even though I will not be there.

Wow...and I thought I talked in circles before things went all crazy on me....So, I am not sure where I am going with any of this.....that is why I always hesitate to write....I am just brain barfing....(you like that mind picture, don't cha)

Do I wish I could go to Atlanta?....YES! Do I understand God's timing?....not all the time but I will obey...there are times as parents we say "no" and our children do not understand why....that's just how it is. Do I feel major spiritual warfare?....YES!....it's scary.....I have to be solid at such an easy time for weakness. Am I up for the challenge?....YES....if it will bring me, my family and friends closer to God and help lead others into a relationship with Jesus Christ, then I am up for it.....

....strap on my armor and charge ahead without a thought of what is left behind.


(someone get the Clorox to clean up this mess!)

A Tribute To Jacob - Posted On A Friend's Blog

Jun 7, 2008
A New Son and a New Name
First an introduction. Simon Jacob Pollock was born on June 6, 2008 at 5:30 in the morning. [This is where weight and height would be inserted.. but I’m not really sure why people give those stats, so I’m leaving them out.] He looks just like a Pollock. Below is his very first picture.

Now for the story of his name.
Simon’s name was not always to be Simon Jacob. Just a day earlier it was to be Simon Clayton. Clayton was a family name and so initially we thought it made a fine middle name for Simon. The hours surrounding his birth would change all that. On June 5th we traveled to be with friends who were celebrating the death of their young son Jacob.
I say celebrated, and not mourned, because celebration definitely characterized the event. The Fahmer’s believe, as do I, that a child who has not sinned is not subject to the demands of the Law and therefore the Wrath of God (not the case for the rest of us who have knowingly transgressed the commands of our loving heavenly Father). It was a celebration because he is in heaven where he continually get’s to behold the face of the Lord Jesus and is free from the suffering that characterized his short life (138 days).
Jacob Fahmer was born with Trisomy 18, a life shortening condition (you can read his whole story here). His life was short, by God’s own choosing, but it was not without value or significance. He, like,all creatures made in the image of God, brought a certain reflection that is not limited by length of days. For one, the Fahmer’s life has forever been changed, by the gift of his life. Secondarily, I believe (and you can read testimony for yourself in this post and in others on Jacob’s blog) that people have been caused to consider their lives and their God. What other purpose and hope can one have?! What else is lasting and enduring, than to have the effect of causing people to reflect on their standing with the Eternal God.?!
As we celebrated Jacob’s “home going” my wife began to experience the pangs of labor. We gathered our children, said a few quick goodbyes and headed home (a hour and 15 minutes away). On the way back, we could see that labor was beginning to set in. My wife’s contractions were becoming regular instead of fading away. At one point I looked over to my wife and said “If we have this child tonight I want to call him ‘Simon Jacob’”. My wife gave a quick nod of agreement.
Why the change?
I don’t believe in coincidence. I believe that God orders our days, our death, and our birth. It was not a mistake that my wife went into labor at Jacob’s funeral. It was God’s plan. It’s not just the timing of the event that leads me to see God’s hand, but also my understanding of God. God brings life and death together. He did it when His Son was crucified. Jesus’ death brought forth eternal life. The Creation testifies about this every day. You have to be blind not to see that God has ordered death to life. Plants & Animals that die and fall into the ground and nourish the next generation. A simple walk through the woods could teach this to the attentive eye. All through the Creation death and life are caught up together to point us to the revelation of Jesus’ death on the Cross and Resurrection three days later.
This is the story I want to characterize my life and the life of my family. The story of Jesus’ death and resurrection. He is embedding that story in our lives, even through the simple “happenings” of life. Jacob’s death.. Simon’s life have been tied together in a narrative that God is writing. I am happy simply to see it, acknowledge it, and worship because of it.
Simon Jacob – because God brings life out of death.

Awesome Truths