Meet CASE!

This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.

Thursday, March 20, 2014

Don't give up....Let go....

Don't give up....Let go....

Sometimes I want to give up. I'm so tired, not strong enough, brave enough or organized enough to be the mom of a miracle. It's a privilege and a challenge wrapped in paper work, headaches and messes.....Beautiful messes. 
Then I hear it....a soft, sweet voice... "Don't give up. Let it go."

"Just let go.....Know your children are mine. I've lent them to you.....To parent not perfect. Perfection is a delusion."

When it takes everything I have not to throw in the towel I remember, I don't have to white knuckle my problems (and trust me, it's problems I've got.....). I can let them go. Be broken and remade. "I don't want to be rescued....I want to be redeemed"......Scary thought, right? "I don't want to be RESCUED, I want to be REDEMED!"

*"redeemed":  to make (something that is bad, unpleasant, etc.) better or more acceptable. 

Being rescued would be easier....in the present. For all my troubles to go away....Financial hardships, emotional turmoil, physical suffering and on. For it to just "fall off", yeah, that would be easy but would it change me? No. Would being rescued better me? Maybe for a few minutes but then I'd be comfortable for the first time in a long time and I wouldn't need Him. God never promised we'd be comfortable but he did promise peace in the turmoil, joy in the pain and sun just enough for a rainbow after the storm. He is sovereign. He wants us to let it go not give up.....

Oh god, I want to let go. Every day. Every moment. Every time the phone rings, the paperwork disappoints, the Drs disagree and the system discourages me.....Every time and expected or unexpected bill comes in the mail....Every time I wake fearful......It's a continual and conscious decision I have to make....Let it go. Let it go.... My problems are endless, out of my control. They give me headaches and change my attitude but they don't have to. I. Am. Out. Of. Control. So, why not let go? I am forgiven and can have joy in the journey.


 
Lyrics to Create In Me :
(Verse)
I’m running ragged
My mind is full of words that I'm too scared to say
I’m running ragged
But you still love me this way


(Chorus)
I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me
Create in me again
Create in me again

(Verse)
My heart is a cathedral
These halls would echo in the darkness for so long (for so long)
My heart is a cathedral
Come and fill it with song

(Chorus)
I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me
Create in me again
Create in me again

(Verse)
Build something beautiful
Don't leave until you do
I'm tired of the old routine
Make me new

I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me

(Chorus)
I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me
Create in me again
Create in me again
(Verse)
I’m running ragged
My mind is full of words that I'm too scared to say
I’m running ragged
But you still love me this way

(Chorus)
I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me
Create in me again
Create in me again

(Verse)
My heart is a cathedral
These halls would echo in the darkness for so long (for so long)
My heart is a cathedral
Come and fill it with song

(Chorus)
I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me
Create in me again
Create in me again

(Verse)
Build something beautiful
Don't leave until you do
I'm tired of the old routine
Make me new

I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me

(Chorus)
I don't want to be rescued
Oh I want to be redeemed
Won't you break me
And remake me
Create in me again
Create in me again








 



 

1 comment:

  1. What a beautiful family. You are such a wonderful witness for Jesus Christ. My prayers go up for you and this beautiful baby.

    ReplyDelete