Just when you think things can't get worse, they inevitably do.
It could not have been more than two hours since a stranger drove off with my little boy that the lab called. Grey had needed one more blood test to confirm his diagnoses of Krabbes Disease. My husband took him on Tuesday, all the way to San Antonio, where hospital staff was awaiting him. Not that it was bad enough that he even had to have another test, given the little amount of time he had with us, but the only place they could find a vein was in his head. Thank God I wasn't there. The sample was sent off to California. However, the lab in SA used a tube dated 4 days earlier. On it's arrival, California disposed of it, because the sample was too old.
Because his diagnosis was presumed, not confirmed, our doctor felt we would have issues when trying to advocate for newborn screening for the disease. This meant that Grey would have to have an autopsy, something we had tried desperately to avoid. They would need to biopsy white matter from his brain. The expense would be astronomical and when we told the lab that messed up that they should pay for it, they told us we could get a lawyer.
We met with the funeral director today. He is an incredible man. He had picked Grey up yesterday. He cried when he saw him, something that he is trained not to do. Had he not cried, I probably would have never let him take Grey. Anyways, he told us that we could petition our JP for a state mandated autopsy, if she felt his death was unresolved, but that it would be hard to do. That means the state would have to pay for it. Just then, Bill's little sister called and Bill told her what we were going through. Little did we realize that Bill's sister's husband was our JP's nephew. That's right, we had gone to family functions with her and not even realized who she was or what she did. She was at the funeral home within 10 minutes, signing papers to have Grey's autopsy done immediately. It will happen in the morning. We will have the final diagnosis within days.
Sadly, the approval of our son's autopsy was the best news we had gotten in days.
I know that no matter how long I live, and no matter what I go through, NOTHING will be worse than where I am now. My heart hurts. Whenever I hear laughter, I wonder who could possibly be laughing at a time like this. But I keep telling myself, I am not going to be that angry mother who lost her baby.
About Me
- Nicole
- I am the mom of 4 boys. My youngest, Greyson, was diagnosed with Krabbes Disease. He left his broken body behind on 12/12/08, just six days shy of his 1st birthday. I am a Special Education teacher. My husband is a pediatric nurse. We have been married for 16 years. Together, with the help of many, we have used Grey's life and loss to try to expand Texas' newborn screening program. HB 1795 was signed by Governor Rick Perry on 6/19/09, establishing Greyson's Law. However, it lost it's funding before even one baby was screened. We have established Grey's Gift Memorial Foundation to teach other of the importance of newborn screening.
COunter
6 comments:
You are entitled to feel however you are feeling, at any particular moment. Don't let anyone make you think or feel otherwise, ever. You will be accepted with no strings attached, no judgement whatsoever.
When you told me your good news today, I had chills. Every time I would think about it, I would get chills again. I know God had a hand in this.
Grey has struck a chord and touched all of us. Even a funeral director who is "trained" to compartmentalize all of these emotions was moved by the spirit and heartfelt sadness of the situation and the unfairness of why anyone must go through this. I got in bed with Trenton last night and wrapped my arms around him and sobbed knowing something so precious could be taken away so quickly. I sobbed thinking of Grey and your family. I cannot begin to tell you I understand your pain or hurt, but I am weeping with you and your family my only consolation seems to be motivated by what I can do so that others do not have to endure this kind of hurt. This is an anger that persists, has direction and purpose. This is an anger for your son. This will be Grey's gift. David
I'm so sorry for your loss. Please take comfort in knowing your son is with God. He will watch over you.
It's okay to not want laughter right now. Take care of yourself, and don't worry about anything else. Let yourself feel what you need to feel. Heavy, heavy hearts here for you...Jona. xo
I'm so sorry for you loss. So, so very sorry.
My heart goes out to you. As a mother of a 9 month old I can only imagine the weight of your grief. There are no words to express my deepest sympathy to you. Although I do not know you, you and Greyson have been on my mind and in my thoughts and prayers. Please continue to be strong and know that you, your family and especially Greyson will continue to be in my prayers. Your advice on cherishing every moment and not taking your children for granted is ringing in my ears.
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