Tuesday, June 7, 2011


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.


  1. Ben will get there....take it from a grown up level 2....he'll get there.

  2. I can totally relate to this...it is hard. All of this is hard. It would be awesome if Ben is a candidate for this procedure. It is so exciting to even think of it (well, once you get passed the scary part of the surgery). Much love to you.

    I had never heard of this procedure before! I am definitely going to follow up on this for our fammily. Thank you so much for sharing!

  3. Oh I hope for your hope Cary Anne, I do. I'm glad it is sneaking its way back in for you!

  4. Cary I know it is so hard sometimes to not give up hope, but hope somehow always makes it easier for us to put one foot in front of the other. Don't lose the faith. Medical technology is advancing everyday just think back to when we were children and where everything stands today. Pretty amazing if you think about it.

    Hugs and Love to you.
    Also with regards to the video if you have a mac and imovie it is pretty easy. Time consuming but very easy!!

  5. Cary, Hailey is not even close to wear Ben is and I will never give up hope. I think Ben will walk and if he doesn't, well that's o.k. too. But if there is one thing that I have learned about our kids is that they are extremely determined and they always seem to surprise you when you least expect it! Beautiful Ben xoxo

  6. Thanks so much for finding my blog. It looks like we have a lot in common!
    First: your boys are sooo adorable! I know, I hear that a lot, too, and I'm always thinking: "You're just saying that because you can't say 'look at how mobile they are!'" But really! They are super cute!
    This post makes me really sad though. You never get to *know* what this CP is going to be do you? I would have fully expected that boy in the video to be walking by now. Such a load of crap.