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.

Sunday, March 19, 2017

It's Okay Not to be okay.

It's okay not to be okay. 

You: "How are you?"
Internal me: "I might burst into tears.... It's been a rough week and it's only Wednesday. I've caught vomit, stuck a needle into a port, tracked a fever, spilled meds, hooked up IV fluids, make 600 phone calls, worked till 5 each day, tried to cook diner and straighten the house. I've fallen asleep waiting for the night nurse to come when I know there is so much more to do.... All the while, I've tried desperately to make sure my three other children felt as loved and "normal" as possible... Do you really want to know how I'm doing? I mean....REALLY? Will you give me "advice"? Will you tell me how "strong" I am? Will you say, I don't know how you do it? OR will you just look at me with a blank stare because, really you thought I would just say..."I'm okay."?
I give you a smile and say, "Good. I'm good, you?"
Now that I'm 6 years deep into the crazy, beautiful, chaotic, blessed journey of raising a medically chronic child I've realized something... IT'S OKAY NOT TO BE OKAY all of the time.
A few months or so, a coworker asked how Case was. After rambling for five minutes about Intestinal dysfunction, appointments, vomit, Drs, and insurance I looked at up and said, "oh. I'm sorry. Should I have just said 'okay'?." The answer was, "No. I asked because I wanted to know". 
The truth is, I'm not always "okay". I have days when I think I can conquer the world. Days where I go to bed thinking, "I've got this." Then there are days (more often than not) when I wonder if it's possible to die of exhaustion. I wonder if my girls are faring well. I wonder if I'll ever be completely "okay". 
Somehow even when I'm not "okay" it's okay. This crazy, chaotic life is strewn with beautiful. 
A beautiful husband who's always there at the end of the day to tell me "We've got this". A beautiful job that keeps me grounded and gives a a glimpse into lives just like mine, mom's that aren't always okay and you guessed it....that's OKAY! Four BEAUTIFUL children, one that was made perfectly imperfect and three that have grown into lovely young ladies that see how beautiful different can be. 
The reality is, we aren't born strong. Strength comes on the journey. I wasn't hand picked to have a special needs child because I'm better than a mom of typical children....I don't know why God picked me to be the mother of this amazing boy but I know that somehow it will all work out and in the end, the only person that expects me to be perfect is me. 
It's okay not to be okay.❤

1 comment:

  1. Liz, I have often wandered how you have been able to keep going for so long and still keep your sanity. I know God is in control but our human nature and our earthly bodies can only handle so much pressure. I will be praying harder for you that God will give you renewed strength each day for all that you have to face and deal with. . Love and prayers.