Hope

I've blogged alot about acceptance. But I've blogged very little about hope.

I have accepted that Ben has CP. I have accepted that he needs braces and a walker to get around...and that most of the time a walker is actually completely useless. So we checked out wheelchairs for those situations when a walker just won't cut it. And I wrote about why I was OK with a wheelchair.

I said things like "all I want for Ben is happiness and independence". I stopped talking (thinking and hoping) about independent walking.

Ben is almost 4 years old. He is nowhere near walking without a walker or canes or crutches. His hamstrings and calves are EXTREMELY tight. We have done botox and casting ad infinitum (it feels like) with good results (to start) that fade away way too quickly (like in 4 weeks...nowhere near the 3 months they hope for). The step before walking is independent standing...like I tell family members, "you try to stand when you are on your tippie toes and your knees are bent".

Ben's therapists used to say that they thought independent walking at home was a goal for him. That was before spasticity reared its ugly head. Check out this old video of Ben walking with his walker...he's just over 2 years old here. His gait is pretty much perfect...so I see why they used to think that.




Now? Well, he is on his toes always...with knees bent (if the botox has worn off) and his left foot turns in horribly. And he even scissors some. And really? I think his therapist (and I) had stopped thinking about independent walking.

Of course, that's what we continue to work towards. It's why I have Ben doing PT twice a week and doing 6 weeks (plus) of Conductive Education each year.

But to be honest, I had given up hope. I had accepted but I had no hope. I really thought that the most we could hope for would be some independent stepping that would be nowhere near functional. I kept saying how pleased I was that he can do transitions so well and that he should be able to be independent as an adult that would likely choose between forearm crutches and his wheelchair as preferred methods of mobility.

What I didn't realize was was that this was making me very sad. Because I had given up on something that I had really hoped for early on.

And then, Ben's physiatrist said the words "rhizotomy" and "Ben" in the same sentence. And a teeny tiny bit of hope crept into my heart. And took root. I started doing more research. And watching youtube videos like this one of kids walking post-rhizotomy. And talking to Ben's PTs. And that hope grew.

I talked to Ellen from Stumbo Family Story whose little girl Nina had a rhizotomy just 6 weeks ago and is already knee-walking. And that hope grew even more.

I realize that we haven't even spoken to a surgeon yet and of course, (functional) independent walking may not be in Ben's future. But all of the sudden, I have hope again. And that feels awesome.

The Road to Acceptance

Ellen from Stumbo Family Story asked me to do a guest post for her. Something about how I came to terms with Ben's CP diagnosis and acceptance. Ellen and her husband adopted Nina last year from the Ukraine and Nina has CP. So after a few days of thinking and writing, I finally came up with a post called The Road to Acceptance. Go check it out when you get a chance and come back and let me know what you think.

It's going to be all right

Lisa from "Welcome to Elijahland" just posted a letter she wrote to her younger self. And it says basically all the I've been feeling about our journey with CP lately. Go check it out. What would a letter to your younger self say?

Moving past grief

We're 2.5 years past diagnosis day and I feel like I can really say that I'm "mostly" past the grief. I honestly don't remember the last time I cried about Ben, or CP, or seeing "normal" twins.

We're a happy family. I've got 2 amazing kids and we're happy.


I had an interesting conversation with one of Ben's PT's last week..the one that does his casting. She continually tells me how amazing I am and how different I am from other moms that she usually deals with. I don't think she's ever heard a mom ASK to talk to the wheelchair people because she WANTS a wheelchair for her son.

So I thought about that for a while. Partly, I think this is because I read SO MUCH. I think I read something about CP every single day. But I'm not out there reading medical jargon or googling. I'm reading your blogs. Learning from your experiences. And one reason I think I was maybe a bit ahead of the curve on the wheelchair thing was because of this post by Katy at Bird on the Street and the comments made by adult wheelchair users.

But mostly though, I think this is because I've somehow managed to move past the grief and into acceptance. I've somehow stopped thinking about the CP and the brain damage as "something that happened to Ben". For me, thinking about it that way meant that he "should" have been different. He "shouldn't" have CP. He "should" be able to walk. And thinking like that was like a poison in my mind.

Somehow, I've managed to just think that this is how BEN IS. This did not "happen to him". THIS IS BEN.

And when I think that way, I stop crying. And I start to see Ben for who he is right now. And I'm so happy that I get to be his Mom. Me. Not someone else. Me.

And aren't I lucky?