At the halfway point of Ben's rehab here at Shriner's, more and more hope is starting to seep into my heart and soul. I see how Ben steps now and how he stands now and I can't help but feel real hope that these things are going to translate into independent standing and independent steps. I find myself laying in bed at night dreaming of what Ben's future might look like. There seems to be a fight between hope and fear. Hope about what may be...and fear of letting myself get my hopes too high. It is my continuing struggle.
And then I came across this video (again) of another Ben (thanks to Andi at Bringing the Sunshine). A Ben who runs. I dare you to watch it and not cry. I really don't think it's possible to not cry when his friends come back to run with him. And then, when he falls...well, the tears are in full force by then.
Showing posts with label hope. Show all posts
Showing posts with label hope. Show all posts
Sunday, February 19, 2012
Tuesday, June 7, 2011
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.
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.
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