We visited Dr. Nice Guy tonight, Elijah's rehabilitation medicine doctor (also known as a physiatrist). The doc was pleased to see that Elijah continues to improve in his motor skills.
We're looking into getting new hand splints for Elijah. He has outgrown his old ones and since he still keeps his thumbs abducted, the doc thinks new braces might help him as he's now exploring his world more. We asked again about Surestep and Dr. Nice Guy doesn't think Elijah needs any foot orthotics. "His feet look better than my six-year-old's feet!" he said.
We had read in Elijah's medical records that Elijah has spastic quadriplegia cerebral palsy (spastic meaning the muscles are tight and quadriplegia meaning all four limbs are affected) and I wanted to know what Dr. Nice Guy thought. So, before we left I asked the doc the million dollar question: "What type of cerebral palsy does Elijah have?"
The doc chuckled. "That's a good question." He went on to describe the different types of cerebral palsy and how depending on which doctor we talked to, we'd probably get a different answer from each one. He mentioned that he rarely sees kids like Elijah –usually if they're walking as well as he is, their hands would be looser too. The doc thinks that Elijah's motor skills will continue to develop as he gets older, which is obviously great news.
He talked to us about a newer way of classifying cerebral palsy, called the Gross Motor Function Classification System (which we had heard of before). He mentioned that any doctor we talked to would agree that Elijah is a level one, which is the mildest form of cerebral palsy in that classification system. Dr. Nice Guy didn't want to commit to a specific CP type, so I guess Elijah is a level one and we'll leave it at that.
This is good news, so why am I not happy?
I have to say, I left the appointment with such mixed emotions. On one hand, the doc seemed to think that Elijah's motor skills will continue to develop so much so that at some point his cerebral palsy might not even be apparent (!!). Amazing, right? Awesome! Physically, he really is doing so, so well.
But (and isn't there always a but?), he foresees Elijah's disabilities as being more cognitive than physical. I suppose we've known this for awhile now, but it's not an easy pill to swallow. I'd be lying if I said that I'm okay with this. I'm not. What I wouldn't give to be able to have a conversation with my child, even if that meant Elijah told me how much he disliked me. Is it horrible for me to say that I'd trade in some physical stuff for ABC's and 123's? Does it make me a horrible parent to admit that? I've known for almost two years that anything Elijah was able to do would be a miracle. He is a miracle - no matter what. I'm mad at myself for even feeling sad about it.
The future is scary sometimes. I wonder what we'll be able to teach Elijah and what he'll be able to understand. I get weary thinking of school and how we'll probably have to fight for him to get him the things he needs. I worry about his seemingly fearless attitude and how he doesn't seem to grasp personal safety. And, yet, I feel incredibly stupid even saying these things. How can I be sad when we weren't sure he'd even be alive? How can I be sad when he's running around our backyard? Have I forgotten how far he has come? Have I forgotten the parents who would probably kill to be in our shoes?
It's at these times that I step back and remember what's important. What do I want for my child? I want him to be happy. And he is. He loves his life. I want him to know God. And I'll do my best to teach him. By no means am I giving up on him. Nothing is new here. Elijah acquired a significant brain injury at birth. That injury, for whatever reason, affected him more cognitively than it did physically. He has come a long way in the past two years. Who knows what he'll be doing in two more. Perhaps once he conquers all the physical stuff he'll be able to conquer the world. I'm a firm believer that with God, anything is possible and that prayers work. That, however, doesn't mean it isn't hard sometimes.
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6 comments:
Congratulations on your good news, Lisa! That's wonderful that he's expected to keep developing physically. I will be praying for him to someday open up and say, "Mommy you're SOOOOO embarrassing!" and maybe some more loving things too. Someday. :) He'll get there. :)
Lisa,
All the things you are feeling are normal. We all have those feelings. We want the best for our children. You and Andy are incredible parents. All a person needs to do is look at Elijah and know that.
And as you said God has been so good to answer prayers and we all have the hope that more prayers will be answered.
With that said Elijah is a happy boy. Elijah enjoyed his visit to the zoo immensely even though he couldn't really see all the animals. But I do remember when Elijah and I were walking up some stairs and some children were meeting us coming down. Elijah raised his hand to say "hi" to them.
All in all we love him and you can see he loves, too.
Love, Mom
What you said really hits home with me. My little guy is 10 months old, had seizures and a brain injury at 2 days old. and he's been doing really well with motor skills. He hasn't quite mastered the crawling on all fours yet but he's getting there.
I've recently thought about playing with what disability I'd wish for more - does that sound as odd as I think it does? - well with what I'm hoping and not hoping .. cognitive or physical... what's better? what's worse? And then I get down to well I just want him to walk and talk and be able to throw a baseball and know how to keep score of a game. and well I just want him to be able to do it all… that’s not so much to ask for… right?
When my little guy was still in the NICU I had a conversation with my husband about how growing up I knew a kid who was had mental disabilities and thought on some level he has known only compassion from family and his caretakers and he (I think) didn't comprehend all the bad and evil in the world. He was just a happy person. And I thought.. maybe that's a pretty great life to lead.
Well, hope I made a little bit of sense here. I tend to ramble - which is why I leave the good writers to the blogging.
Oh I have another thing to tell you. At our last neurologist appointment, we asked what he typically sees with cognitive ability. He said he feels like it tends to follow physical ability... He did follow this up with it's so hard to tell, he’s seen one extreme to another. Those neurologists… always with that caveat.
- Susan
Hi Lisa-
My name is Jennifer and my son, Roa, is 14 months. He also has quadraspastic CP. We are from White Bear Lake but are currently at WI HBOT finishing our 3rd week! Erin told me to check out your site. It is great to hear yours and Elijah's story!
Check us out at www.rojosjourney.com
Nice to "meet" you! We will have to chat sometime! Jennifer
I don't think you are horrible and you have a lot of reason to hope for Elijah to do many more things and have a happy life.
Barbara
My heart aches for you when I read entries like this, and I just want you to know that I would think you were lying if you didn't talk about all these conflicting emotions! It is so completely normal to want EVERY good thing for your precious child. And yet with the miraculous progress Elijah has already made, who knows what his future holds?
It is incredible the anxiety we feel as parents for the success and happiness of our children... and I think it gives great insight into the way God feels about us. I wish I could give you a big hug over the internet!
I don't know what the future holds, but I do know that if we had just an incling of the perspective that God does, we'd stress out a lot less. :)
I know I'm kind of rambling... I just want you to know how much your family is loved - and how admirable you and Andy are. Elijah is one blessed little man to have you for parents!
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