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.

Monday, March 18, 2013

In the middle of my little mess..



One of my favorite "Case songs" is This Is The Stuff by, Francesca Battistelli. The first time I heard it was at CHP during his 38 day NICU stay. My favorite line is: "In the middle of my little mess
I forget how big I'm blessed" and "So break me of impatience
Conquer my frustrations
I've got a new appreciation
It's not the end of the world". Granted, I have more "little messes" than parents of all "typical" children. And maybe some of my "messes" are a little bigger than little BUT they aren't burying my son (something I was told to prepare to do) and they aren't going to kill me (well, at least I hope not! Lol).

Being a special mom is hard. It's exhausting. You feel constantly on guard for the next "mess". You're frequently fighting with insurance companies, pharmacies and billing offices. You clean up puke more times than you tie your shoe and JUST as you're about to walk out the door something starts beeping or leaking. And yes, sometimes you cry. You yell more than you want to and you wonder some days if you're going a little crazy. You're life is out of control. You can't make the world understand your child. You can't make them love him like you do. You can't make "life" slow down so you can do all the special mom things without the extra crap life throw at you. You need more time in the day to do what needs done. You'll probably always feel like there's more work than day and like there's always "to dos" on the to do list but what you can control is your attitude. That's it, really. You can love the unlovable because God loved them first. You can forgive yourself 70 times 7 then forgive the insurance company's social worker for still calling (after you told her twice to stop) because forgiveness produces bitterness. It puts shackles on your heart. You can only do so much because you are only human. There will be a million "little messes". It's time you give yourself a break and know that it's not the "end of the world" and you'll mess up again tomorrow but that's okay because you are growing. You are a better mom now than you were yesterday and you'll be even better tomorrow because even when you're pretty sure you're screwing up, you see in your child's eyes they you've done something right.




2 comments:

  1. Very wonderfully said. My son is autistic and has a severe mental illness but I relate so well ;)

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