As I’m sure most of you have figured out, my long abscenses are the product of having both a two year old AND a newborn. I am ridiculously slammed , but i wouldn’t have it any other way.
I have also been somewhat avoiding typing this entry. I guess seeing it in black and white will just make it all too real.
Emily has been diagnosed with cerebral palsy. We heard those God awful words last month at her routine well check, and after a gut-wrenching trip to see a neurologist at Children’s Hospital in Dallas, our fears have been confirmed. After studying her the results of her MRI, she has been given a 20-30% chance of ever crawling. Even less of a chance of walking. Hearing that literally felt like someone had shot me in the chest.
A lot of people don’t understand what cerebral palsy means. There are many variables. For my daughter, it means that her torso and neck are very weak. This makes feedings very difficult. She often arches her neck and “fights” her bottle because she feels as though she has no control over the flow of milk. It also means that the muscles in her arms and legs are too tight. They are becoming more and more rigid as she gets older. When she extends those mucsles, she cries out in pain. We also found out that there is a chance that she could suffer from mental retardation as well.
I feel so selfish and horrible as I type this. Because none of this should matter to me, I LOVE my daughter! She is amazing… I’ve never seen a baby so happy. She smiles more than any child I’ve ever seen, even with tears in her eyes at times. She is so strong and vibrant, she is my everything.
BUT I AM DEVASTATED FOR HER…
I am scared of the pain that she will have to endure, both physically and emotionally. I am so scared that others will not love her the way I do. I am scared of the teasing, the lack of undertsanding that others will show. I am scared that she won’t go to prom, I am sickened by the fact that I may never help my little girl pick out her wedding dress. NOT because it has changed my view of how life would turn out, but because I wanted her to be happy. I wanted to give her the world, and I feel like somehow I took it away from her.
Everyone keeps saying it’s not my fault. I explained it to my husband this way… “If you had a car crash and the kids were hurt… Even if the wreck was not your fault… you would feel guilty.”
My body failed this baby. The drs seem to think that there was a blood clot in her cord, which in turn caused a stroke while she was in the womb. The same thing that killed all the others.
It makes me sick.
But I will not lose hope. My daughter is HERE. She did not die like her brothers and sisters before her. She is a miracle regardless of what any test or diagnosis may say otherwise. She may not be “up to par” with our world’s standards, but she is LOVED.
She will always be loved. I will do anything to help her. I will always fight to give her the best chance that she can have.
I WILL take my daughter dress shopping, I WILL do all of the things that mother’s and daughters are supposed to do together.
Because she is my little girl. The one I prayed for. The one I cried for. The one I would give my life for. And I thank God every day for her existance. I thank Him, because I did NOT have to bury this daughter.
The night that she was at her worst in the NICU, I promised God that if He could just GET HER HOME, I would handle the rest. I could handle anything, no matter how bad, I just wanted my baby to LIVE.
Now it’s my turn.
