Kyle's NICU Story in Pictures

Tuesday, March 11, 2008

Hard Day - Kelly

Kyle is doing good - it's not his day that is hard.  I am really struggling.  I go from thinking that the tubes I have to drag around a pain and won't it be nice when they are gone.  and kyle looks at me and tracks the book or toy I am showing him and seems to be doing so great.  to .... ready... acting like a crazy person and searching the internet for any info on DEHSI and white matter loss in the brain and study after study of pre-term infants who have this or that and go on to do this or don't do that.  I look up words in medical dictionaries and then look up to realize I have wasted hours away I could be ... well... sleeping for one thing.

then last night I stumble to a website I have checked frequently and I find a mom - an amazing mom - that attends 8 therapy sessions a week for one of her sons.  she has picture after picture of him and video too and she speaks of how proud she is of him and his attitude and how hard he works and all I could think was how I am just sitting like I am mourning what might never be instead of fighting for this little lion that GOD entrusted to ME.  

what a wake up call - the other part is I go from listening to everyone tell me that he is going to be fine.  just fine.  and then I see other mom's well - just this one actually - who LOVES the lord and prays over her children very specifically and she works so hard for them - therapy after therapy and I realize - Him being "fine" may not come from all of these doc appointments and constant watching and working with him going away.  it may come from YES God healing him but I am learning that restoration doesn't always look like we want it to or what we think it might look like.

I get caught up in listening to people around me that have never been through this that want to speak life into me but it ends up making me doubt that I should be doing anything - it is like I get on board with them and think  - ya - it will be great when all this is back to normal.  

I have got to wake up, realize that the "normal" or "natural" or whatever sucks anyway; step back into the supernatural and FIGHT.

here is my first act in battle:  I Cor 10:15  - (my translation) "For the weapons of our warfare are mighty in God and useful for pulling down strongholds and casting down vain imagination."

-bring all of these thoughts into captivity.


Mommy07 said...

I don't even remember how I came upon your blog...but anyhow your post today hit home. My son ( Noah) was born full term but had seizures when he was a few hours old ( possibly related to some *unknown* trauma on or about delivery). I spent the first 2 months of his life manically searching the internet for studies, dissecting medical terms and trying to play expert. I too have realized that was SUCH a waste! I missed out on my newborns first first born baby that I will never be able to go back and enjoy those days... if you ever get a chance, you can read my blog:

Anonymous said...

Remember Kelly, every parent is different. Every parent copes/works/heals (list could go on) differently. I am sure the other Mom that you are referring to did PLENTY of research! It doesn't hurt to search the internet, ask other Moms, read other stories. You have Kyle. God has a plan for him already! It may or may not be your plan, but I can guarantee you that God's plan is the best plan for him. Does that mean you should skip the therapies, the prayers, the hope, the struggles, the "expert" opinions - no, but realize that Kyle has a plan from God for his life. I know a Mom (foster mom) who brought home a full term, "normal" baby who is having trouble with sitting, crawling, eating, etc. She also brought home a preemie who had brain bleeds and other issues and given a poor prognosis (whatever that is!) and that little girl is walking, running, talking, etc. Kyle's "normal" may be a new normal as it already has been or he might be totally healed and everything is hunky dorey! Do what is right in your heart, gut, and Mama's instinct! God bless you!

Amanda said...

your honesty is a breath of fresh air. many prayers are being said for you guys, and I love this blog because it allows us to pray specifically and intentionally. Thanks for blogging.

Anonymous said...

Kelly - I will write you a longer message since you said you'd like to hear from other preemie moms, but I felt I needed to send you a little note of encouragement from one who knows... Muster your strength. Sometimes we need a "strength vacation", but we don't ever want those little babies to know it. They are working too hard for us! All you can do is the best you can do... which means that we fight, fight, fight! Pray hard, be active in your sons recovery... and realize that you are right - at the end of the day he may not be the conventional idea of "ok". But don't borrow trouble... be educated in what to look for and what you can do to help him, but do your best to enjoy Kyle each day as he God made him. He has already overcome SO many odds.

Praying for you and your family. This journey is hard even when you think it should be easy...

Kelly E.

Jennifer said...

Kelly - I can SO remember the days where my nose was buried in anything related to prematurity (Max was born at 26 weeks). Those days are long gone, the books have been packed away and I have deleted all my "favorite" prematurity sites on the internet.

I can honestly say, now that he is 4 1/2, I can't imagine Max being any other way than the way he is and I think I can say - GULP - I wouldn't change a thing. :) It makes him who he is and, not to be selfish, it changed my life drastically in a way that was so desperately needed. I sure don't mind taking him to his "special" school or his therapies because it has helped him tremendously and I have met wonderful people I wouldn't have met otherwise.

So, all that to say, it's okay to feel what you're feeling now, but trust that there will come a day when it will just be your normal life and you'll just worry about sweet Kyle pooping in the potty and not in his underwear - my current worry issue! :)

By the way, Max is leaving his "special" school and will be attending K-4 next year. It's taken several years, but he's now right there with the rest of them!

Anonymous said...

I love it when you say stuff like:

"I have got to wake up, realize that the "normal" or "natural" or whatever sucks anyway; step back into the supernatural and FIGHT."

Thanks for sharing your human-ness, and those cute pics of the boys.
Kay S.

Cindi Martineau said...

You do such amazing introspection! I'm so impressed with both your faith and your ability to embrace your human-ness. I appreciate being able to read about your struggles and pray for your family. I never had a preemie and my baby struggles have been nothing in comparison, so I can't know what you are going through, but just know that God loves you more than words can tell!

Anonymous said...

This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now.

Click below to go to my Personal March of Dimes Page

Our Story

This story begins with 5 people. John, Kelly, Jadon, Jack, and Kyle (he is only 23 weeks old... and he is still safely tucked away in his mommy's belly) In an hour's time Kyle made his way into the world. 1 pound, 3 ounces- 11 and a half inches long. This family will never be the same. This child is a warrior. He has the spirit of a Lion, and more courage than a whole pride. He is fierce, and fearless- and he is teaching us to fear the Lord- and to believe that God is in our midst and healing even now. Join us as pray, as we praise, and as we journey through this life as lovers of God and all His glory.

Kyle is in the March of Dimes Promo!