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.

Wednesday, April 2, 2014

Rise Above Your Circumstances.

Rise Above Your Circumstances. 

I've heard that phrase 100 times and never gave it a second thought... Until last night. Rise ABOVE your circumstances. 

It's been a long month (I think I say that every month) with "normal" SN issues, 3 long days full of appointments, blood work and tests at Children's, long car rides, and you know, raising four children....
I'm not telling you all this to complain, I'm telling you this because it was last night, while I was tossing and Turing that I heard it "Rise above your circumstances."
Rise above the issues, the system, the chaos, the pain, the fears that this will never be easier and BE AT PEACE. That's what's crazy about peace, we can have it admist the war. Tucked deep, down in our heart. We can feel it in the PICU and when our son's case workers won't won't call us back. We can feel it when we're tired, sad and happy..... 
You see, life is not going to get easier. There are no magic genies or wands just an ever powerful God that has strength and peace unlimited.....and after one crazy month, while I'm sitting in my sons room at 6 in the morning catching his vomit and rubbing his head (not because he's sick but because his tiny body experiences pain, chronic pain every day) I CAN HAVE PEACE. Because, "HE knows the plans he has for me" (for Case, for this entire family....)and they are good. 
I've spent the month listening to Drs tell me how complicated my tiny 3 year old is, that they've never treated anyone "quite like him". I've added to his unending lists of diagnosisis and I've held back tears while I asked a dr if this was "his son", would he give him another chane? Would he run more tests? Would he figure out why he vomits and has headaches most every day of his life?
I'm not a dr but I'm his mom. I am thankful for the beautiful blessing of Children's, for the incomparable care and that even though my son is "incredibly complicated"...they won't give up. I love him and his sisters with all of my heart and I will always be their voice. But, they ultimately belong to God. Always will. They will always be "okay" because they are in God's hands. 
I don't have to be fearful and admist sleepless nights, long days and hard battles I can rise above. I can have peace and have it abundantly and you my friend, can too. No matter what your "circumstances" are you can have rise above them and peace abundant. 

 

"I am calling you to a life of constant communion with Me. Basic training includes learning to live above your circumstances, even while interacting on that cluttered plane of life. You yearn for a simplified lifestyle, so that your communication with Me can be uninterrupted. But I challenge you to relinquish the fantasy of an uncluttered world. Accept each day just as it comes, and find Me in the midst of it all."-Jesus Calling

(Verse)
I can barely stand right now.
Everything is crashing down,
And I wonder where You are.

I try to find the words to pray.
I don't always know what to say,
But You're the one that can hear my heart.

Even though I don't know what your plan is,
I know You're making beauty from these ashes.

(Chorus)
I've seen joy and I've seen pain.
On my knees, I call Your name.
Here's my broken hallelujah.

With nothing left to hold onto,
I raise these empty hands to You.
Here's my broken hallelujah.

(Verse)
You know the things that have brought me here.
You know the story of every tear.
‘Cause You've been here from the very start.

Even though I don't know what your plan is,
I know You're making beauty from these ashes.

(Chorus)
I've seen joy and I've seen pain.
On my knees, I call Your name.
Here's my broken hallelujah
.

With nothing left to hold onto,
I raise these empty hands to You.
Here's my broken hallelujah.

When all is taken away, don't let my heart be changed.
Let me always sing Hallelujah
When I feel afraid, don't let my hope be erased
Let me always sing Hallelujah.
Let me always sing Hallelujah.

I will always sing
I will always sing
Here's my broken hallelujah.

1 comment:

  1. Love your message. Thank you! Praying for you to have abundant peace.

    ReplyDelete