I got a phone call this morning from a lady I met when I first moved here to Arizona. We started at the Foundation for Blind Children at the same time. Her child was younger than Tyler. This poor women had no idea how to navigate the system. She was grasping for information. It was hard to watch her but at the same time it was interesting to watch her gather information and learn to navigate through the ups and downs. She was also learning to fight with everything she had to get her daughter help.
The phone call was so sad. She finally got a diagnosis for her daughters delays. The diagnosis was so horrifying for her that she couldn't handle it. She was not sure how to handle it. She wanted to blame someone. She was convinced that because of someone else she know "suffers" the consequences. She wanted to know how I handled getting "the diagnosis."
Her daughter was diagnosed with Cerebral Palsy.
Tyler has a diagnosis of Cerebral Palsy.
It really got me thinking. How do or did I deal with the diagnosis?
It took us a long time to get someone to actually say the words. No one sat down with us to tell us that this is what we have and this is what it means and this is what the end result is. No one has done that.
While we know what we have and what we see on paper we don't know the end result. I know that for me it was hard to get the diagnosis. I was expecting it a lot sooner than we got it. Mostly when he didn't start walking. I asked about it alot when we were little and we never got anything. When he didn't walk I knew. But in the end I thought the diagnosis would change something.
It changed nothing.
I can't blame myself for it. There is no doctor stepping up and saying that they did this. There is no one that created this and we just happened to have to learn to deal with it.
It didn't change anything. My son is still Tyler. He is not the little boy with CP, he is Tyler the little boy who is walking when he wasn't suppose to. He is the little boy who is funny and cute and gives great hugs, oh and he has Cerebral Palsy. It is not who he is .. He is him. CP is just a part of him.
In the next few months we are embarking on the journey to help us rehabilitate Tyler and make him be the best Tyler he can be.
I didn't know what to say to that mom when she asked if I was angry. I am not angry. I am not angry because I knew that this was Tyler and CP was secondary, Tyler is the ONLY person who can beat this. He is the only person who is going to tell us what the outcome will be.
This......This is what inspires me. It makes me wonder what Tyler will do to become THAT. What will he long to do.
4 comments:
You are so mean.. ;)
Tears are flowing again.
Thanks for this.
I think you are aboslutely right.
Ethan was diagnosed before leaving the NICU with CP.
I had no idea, how sever it was or what his life would be like, but I knew he had that "dx".
His deafness and blindness was assessed at six months.
Needing a wheelchair was at his first rehab appointment a week after his deaf blindess was diagnosed.
I have been angry. I have been in denile (at one point or another), and I have bargined with God or anyone who would listen.
But you are right. Having that DX does not change who Ethan is. Ethan isn't this little boy with deafblindess and CP.
Ethan is Ethan, and what his success level is or isn't, is only determined by him. Not by what is written on a peice of paper.
Good articulation!
Nancy, that story was amazing. where did you find that! I know Tyler will do that. He is the one that when the drs say he won't do something, he is out to prove them wrong! Tyler is such a hero in my eyes!
I don't know if this is just something I heard people say in the NICU or something you actually said, so sorry if I am telling you something you already said. With any diagnosis our kids get, there is such a range and so much unknown. Tyler doesn't know he has CP, what it is, or what it is limiting him to. He is just going to be cute little Tyler and do whatever he wants.
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