Saturday, December 6, 2008

Life Is Short, But Sweet For Certain


Greyson was born a healthy, beautiful boy. When you looked at him, all you saw was eyes. People were drawn to him. His smile and his personality captivated people. I knew back then that he would be the one who would change lives. I just didn't know why.




As he grew, it seemed as though his body couldn't keep up. At times he appeared like a rag doll. When he did move, it was like his limbs weighed a thousand pounds. The ability to control his head was a chore. My husband, who is a nurse, and I knew things were just not right. At his 6 month appointment we were told he was just a lazy baby. He was the youngest of four boys and wanted for nothing. He could murmur and have his three brothers at his beck and call.




At 8 months he was still not sitting up or holding his bottle. He had begun to roll over, but stopped. He hated being on his stomach and could not push up on his forearms. He was shaking his head no-no and saying da da. His intelligence was above average, but his body was regressing to that of a newborn. We made an appointment with our pediatrician to discuss our concerns, not wanting to wait for his 9 month appointment. It was this day that our whole world changed.




Immediately we were sent to the hospital for testing. Our doctor was thinking MD. My heart hurt. Grey's CPK levels came back a bit elevated and we were then sent to a neurologist. After 3 months of MRIs, muscle and nerve biopsies, a spinal tap, and tons of blood work results revealed a fatal disorder, Krabbes Disease. This is a leukodystrophy in which the white matter of the brain deteriorates. Worse yet, if tested though newborn screening, it could have been treated and Grey could have been spared.




Yesterday, Hospice came out to our house. Our neighbor witnessed as we signed a "Do Not Resuscitate" order. Grey's 1st birthday is two weeks away. Christmas is three weeks away. We don't know if he'll see either.




My hope is that through his loss we will bring awareness. My state, Texas, newborn screens for 29 of 55 treatable diseases. Unfortunately, Krabbes is not one of them.


Please join me in this journey. It is only the beginning.


7 comments:

Texas Mom said...

Nicole, I am so impressed! You are officially a blogger now! Please know that your family is in my thoughts constantly. I will join you on this journey and fight right along with you. You are an amazing woman. Your strength and courage is an example to all of us.

Beth said...

Oh Nicole...my heart hurts..I can only imagine your feelings. Please know that there are many of us moms out there praying for peace and understanding. Hugs

Margaret said...

Nicole, Sara came from school on Friday with the news that your son had Krabbes disease. Your family has been on heart ever since. Our family is praying for your family and we will let our church and community know also. You have blessed many over the years and have taken care of my daughter,life would not have been the same for her without you. I hope that we can find a way to bless you now. Please let us know if we can help you. We are great at grocery shopping, doing laundry, cleaning house, babysitting.... whatever you might need right now.
The words that you have written on these pages shows that you have a strength and love for your family that is bigger than yourself and any understanding. I pray that God continues to give you the strength and peace that you need for this journey.
Your sister in Christ,
Margaret Heitkamp

Penny said...

You have some amazing strength! Please let me know if there is EVER anything I can help with. I am behind you on getting this information out there!

All my love!
Penny

Carrie said...

I didn't realize that you are in Texas too -- so am I (just NW of Houston).

Anita said...

Nicole, I learned about Greyson from Misty and her blog. My prayers go out to you. You are such amazing woman. Blogging about this is powerful. I am holding your family in my prayers daily.

CHMScheer07 said...

Mrs. Morris, i am terribly sorry. I dont understand how you feel, i dont think anyone does. But there is alot of people out there trying to make Grey's Gift a law. I know this whole thing means ALOT to all of the cheerleaders along with our outstanding cheer coach. We couldn't hold back our tears when we found out that it was you losing your son. You have been such a blessing to all of the students at CHMS along with the administration. If there is anything we can do to help with you and your family let us know. We are willing to do anythingg. I will keep you and your family in my prayers and just look at it in a good way. Grey is officially in a better place and is in no more pain. He meant alot to us all, those of us who didn't even know him. I am extremly prid of him for fighting for his life for this long, he is a very strong boy. Again i am sorry and your family is in my prayers.

-Kaci Rice