Tuesday, December 30, 2008

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!

Tuesday, December 23, 2008

Monday, December 15, 2008

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."

Wednesday, November 26, 2008

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."

Monday, November 24, 2008

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....

Saturday, November 22, 2008

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....

Friday, November 21, 2008

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.

Friday, November 7, 2008

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!"

Wednesday, November 5, 2008

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.

Saturday, November 1, 2008

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!





Tuesday, October 28, 2008

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."

Tuesday, October 21, 2008

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.....

Monday, October 20, 2008

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/

Wednesday, October 15, 2008

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.

Sunday, October 12, 2008

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.

Saturday, October 11, 2008

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.

Thursday, October 9, 2008

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.

Wednesday, October 8, 2008

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.

Monday, September 29, 2008

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!

Monday, September 15, 2008

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

Saturday, September 13, 2008

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!

Tuesday, September 9, 2008

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.....


Tuesday, August 19, 2008

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

Thursday, August 14, 2008

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:



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



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



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.

Wednesday, August 13, 2008

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! :)

Tuesday, August 12, 2008

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:











Monday, August 11, 2008

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

Wednesday, August 6, 2008

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"

Wednesday, July 30, 2008

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.