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

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

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

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

Faith Creations, LLC Necklace

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

Berry Pickin'

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

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

Summer pictures

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

Tuesday, July 29, 2008


Hi there all my blogger friends. I know it's been quite a while since you have heard from me or Jason....lots going on. It actually has felt good not to be on the offense to all of our blogger friends but it is nice to take a vacation from it. It wasn't just kind of happened.

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

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

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

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

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

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

Friday, July 18, 2008

A Beautful Journey

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

Wednesday, July 16, 2008

Deeper Still: A Divine Appointment Indeed

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

Tuesday, July 15, 2008

Jacob's 6 month birthday

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

But it was a beautiful day with those tiny new....

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

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

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

Friday, July 11, 2008

Touching us from Heaven.....

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

Go here:

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

Very cool. Thank you Jacob. Thank you Jesus.

Wednesday, July 9, 2008

My Tattoo

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

Children are a blessing...

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

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

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

Monday, July 7, 2008

Our Anniversary Weekend

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

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

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

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

Sunday, July 6, 2008

Another Tattoo?!?!?!?

Here is my sister Julianne's tattoo. It is on the inside of her leg just above her ankle. The balloons represent the color balloons we released at his service, the blocks have his initials J-R-F on the front of them on one side and 1-3-8 on the other side representing his 138 days here with us. He is going to be the most tattooed kid!
I go Tuesday for mine!....I am getting his right foot print on top of my right won't hurt!>...once I've passed out! A little bit of physical pain to have an outward symbol of Jacob.....

Thursday, July 3, 2008

He grew up

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

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

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

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

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

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

Tuesday, July 1, 2008

Ok, so Atlanta....

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

Kristy (mother of Isaac & Asher

Chrissy (mother of Eva Janette

Kenzie (mother of Maddox

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

After the conference we headed to the hotel for some pizza and girl-talk. Now, you all know I have been dying to have girl talk.....well there was no lack of that! I got 45 minutes of sleep for the entire night!!!!....and that was more than some! We just chatted and then as other retired, it was just me, Emily and Kim up. I am not sure how we even got onto certain subjects of things but we just talked and talked all night. It was I am, in a hotel room, with no reservation about what I am saying or who I am sleeping next to...complete comfort. So, then I said some things....things I have NEVER said......things that I have typed to you all about Jacob's passing but these words have never actually rolled off my tongue, out of my mouth to be audibly heard by those in the room. I sobbed. I sobbed in the arms of two of the most beautiful women I have ever met who, although they knew very little about me, they know more of my life now than anyone else could because they were there. They held their babies dead limp bodies. They kissed them for the last time. They arranged a funeral for them. They are praising God for the joy that comes through the storms. They are forever changed because of their beautiful babies they long to hold and will gaze upon them again only in the presence of Jesus. They not only wrapped their arms around me and held me, they comforted me like NO ONE could. How healing.
After our 45 minute night sleep, we headed to the conference. Saturday, June 28th. Miller Grace's (Emily's baby girl) one year anniversary of meeting Jesus face to face. Also, 4 weeks since Jacob's passing. Now, Emily and I found it very crazy how similar we are....we are very compatible and have similar ways of expressing ourselves and similar ways of reading others (it's hard to explain). So here we were, one year/four weeks after our baby's passing, holding each others hands, raising them up in pure whole hearted worship, then staring each other face to face and commissioning each other to live a life "deeper still." How beautifully orchestrated. "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11. I thank God for His plans. I thank Him for His plans of blessing us with our babies as not to harm us but to give us hope and a future. I thank Him for so clearly spelling it out for me and giving me the Bible to strengthen and see how God's Words are so relevant today as it was and will always be.

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

We headed to dinner and then back to the hotel to go swimming and work on some crafts. We each bought a dish and smashed it and then collected a piece from each other and we are to make something out of it. I am not sure what it all stood for but, man, did I love smashing things! Emily didn't want to do hers so I did it and then any time someone needed a piece smashed again, I was right there to smash it. Some ladies are gluing the pieces to a picture frame and some just made clumps of broken pieces....I took each piece and glued them together and when I looked at it, I saw each piece that represented these broken families but glued together we produced a masterpiece that blesses others with our brokenness. Then we made "mats" that represented the crippled man who was brought by his friends to Jesus through a crowd and he was lowered through the roof (Luke 5:17-20). Our craft mat represented the mat and we are to bring each other the Jesus when one is crippled and cannot carry their own mat to Him. We put our baby's name in the middle and then everyone signed their baby's name(s) and their name around it. We then just girl talked the entire night again. Everyone pooped out in our room except Kim and I. Kim's baby girl, Mary Grace, and Jacob share the same birthday and we just talked about how amazingly different our stories are but yet we are all just knitted together with different similarities.
So we finally got to bed for about 2 hours and then the morning of good-byes began. Emily and I slept through breakfast not realizing Angie was leaving right from there (SORRY ANGIE!...we love you!) and then we started dwindling.....our group of 8 was down to 7, then 6, then 5, then 4....we headed to the airport together and then just Emily and I were left. Then I said good bye to her. That was so hard. The woman who was used of God to get me there to experience the weekend of a lifetime....who I cannot just go out to lunch with whenever, who I love deeper than can be explained, who I bonded with from the instant we were in contact, who has allowed my baby boy into her heart to enable her to love again, who is a beautiful vessel....I hugged her and held her tight and cried in her arms. I walked through the airport overwhelmed by what had happened that weekend. Every single one of these women touched my soul. Every one, although we came in contact in different ways, left such a huge imprint on my heart. Every one who's womb carried their babies and their arms are left empty and aching......they are just beautiful women who love Jesus and regardless of circumstances, finds joy in the one true living God. How can you walk away from a weekend like that without tears. How can I not be on the plane randomly having my eyes well up with tears of amazement and thanks. How can I possibly accurately relay it to you. These words do no justice to this weekend. There are no words to accurately relay it....I have left so much out. But it's not for is our gift from God. I pray you never have to experience God in the ways we have....but I do pray that when you are in the wilderness, you will find true joy in it and sit there to hear and see our God like you never have before.