I thought this CP-thing was supposed to get easier? Because lately it's been feeling a whole lot harder. Last year, Ben was almost 3 and I thought it was hard having an-almost-3-year-old who can't walk. That was a walk in the park compared to having an almost-4-year-old who can't walk and is starting to understand how it affects his life.
It breaks my heart to see him holding back and watching all the other kids run circles around him. And I think it's starting to break his heart too.
Last year, he was doing so well with his walker, that I really thought that by now, he'd be using it like crazy and maybe even starting to use forearm crutches to get around...and maybe-just-maybe taking those first independent steps.
But nope. Spasticity totally sucks and Ben struggles more this year than last year. Often choosing a stroller or wagon over his walker.
Last year, I had two happy little boys who really had no idea that Ben was any different. This year, I take one little boy to soccer while the other one asks me why he doesn't have soccer cleats.
Last year, no one really noticed that I had an almost-3-year-old who crawled to get around. This year I feel their stares and unanswered questions.
So yeah...I'm feeling the struggle a bit more lately. I was doing so well all last winter...accepting this CP-thing. Not crying all the time. Actually feeling a little joyful on occasion. I thought I was on the path to "this CP-thing isn't so bad"...but instead I feel like I'm on a detour that has somehow brought me back to those days just after diagnosis. I'm having lots of thoughts that I thought I was done thinking. You know the ones. Things like "why us?" And lots of others along that line.
I guess when people describe our special needs world as a ROLLERCOASTER, they hit the nail on the head, eh? Now I'm just wondering when I start climbing upwards again...
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Aww hugs Cary. That must be hard. Asher wants to crawl around following Nolan - but can't; stand - but can't; sit up with us - but can't; feed himself independently - but can't. He is starting to demand, through frustration and crying, that he do all those things, so we help him as best as we can, but I can see how now, even 2 years younger than your boys, it is starting to upset him, and in turn me. So different scale, but I do understand in a way. Thinking of you!
ReplyDeleteI can feel your pain. It gets better, Cary. I promise. E moves better than she ever has, but she's surpassed in every movement way by her 2-yr old sister (Elena is 6). I imagine having a typically developing twin keeps Ben's delays front and center, which must be harder (not to mention the juggle, and all the other twin stuff). I guess the hardest part of all of this is to keep Ben's head up--trying to keep his confidence as good as it can be. And unfortunately, there's no magic formula for that, I guess. Just lots of love, some pain, and hard work...right?
ReplyDeleteHave you looked into selective dorsal rhizotomy to counteract that spasticity (it will be gone forever with the SDR) and improve gait? You should think about applying for it. I don't know if NHS would cover it, but the best doctor in the world is a man named Park in St Louis Missouri USA. It's expensive if you don't have insurance but it can change lives. There is a page on Facebook for families who have had or are contemplating the procedure that is a wealth of information if you are interested. It might be the thing to give your son more mobility. The doctor will not take any child as a patient if he doesn't think they will achieve substantial gains as a consequence of the procedure, which is pretty invasive but the children recover very quickly. You have to send in a lot of materials as well. I am in the application process and find the group very helpful. Here is a link: http://www.facebook.com/groups/161839724125/
ReplyDeleteHugs to you Cary. I completely understand what you are going through. I am very much like you - some days I think that everything is getting better and I am very positive and convinced that I can deal with everything that has happened. And then M will have a bad day and it all comes crashing down. It is a complete rollercoaster and some days I wish so badly that I could just get off this damn coaster. Thinking of you and hoping your days get sunnier soon!
ReplyDeleteIt is indeed a rollercoaster. I'm sorry you're struggling right now and sending you hugs.
ReplyDeleteIt *is* a roller coaster. I find it gets easier in some ways, much harder in others. It's definitely a wild ride. Hopefully there's an upward slope in your near future; after all the roller coaster always climbs upward again. *Hugs*
ReplyDeleteSending you a big hug!!! I'm so sorry you're feeling discouraged and it's so easy to do. I think having twins makes things so much harder since you have the side by side comparsion. And the way us question, yep I go there all the time. And then I say, why not us, what's so special about us. But then I say why us again.
ReplyDeleteWell, this is a tough one, because I can empathize with you, I really can, (silently) I feel this way alot, I see the one step forward and two steps back way too frequently, But instead of sympathizing and empathizing I'd much rather slap you on the back of the head (I mean that with all the love, respect and admiration in the world!) Because every time I feel this way I talk myself out of it. Because I feel even though these are very normal/typical feelings, they are not helping Hailey one bit. I try very hard to keep my mind and my focus on the one step forward, I try to elaborate on that and take another step forward before she takes the 2 back again. Keep looking forward Cary, keep your center and Ben will too, with your help of course. xoxo
ReplyDeleteVigorously nodding my head in agreement!
ReplyDeleteIt doesn't get easier or harder. It just gets different.
ReplyDeleteI wholeheartedly agree. Whenever I think I'm handling everything well,something knocks me off my game.((HUGS))
ReplyDeleteHi Cary, I'm feeling exactly the same way about Lilly at the moment. She's doing wonderful with her walker and is walking a bit independently but I catch her being very serious at times while watching the other kids running around. We're thinking of a way to tell her what's wrong with her for when she starts asking. She's 3 now but I can tell that she's realizing something is different and it breaks my heart. I know she's doing well compared to so many other kids but it's still hard - my heart aches for her every day, thinking about how much physical and psychological pain she will have to endure in her lifetime but I try to stay focused because that's the only way I can help her through this. I'm thinking of you and your boys. Hugs, Daniela
ReplyDelete*hugs*
ReplyDeletethanks for writing about the bad as well as the good. as a fellow parent with a mild CP kid, i look to your blog and others to get the support and understanding that i don't find with my parent friends with neuro-typical kids. you're doing a world of good just putting it out there.
i, too, swing between an optimistic focus on what my child can do, and what he can't. i don't have twins, but we have a daughter who is 2.5 years younger than our 4 year old. My neurotypical 18 month old daughter already has more words and speaks better than my son with CP, and it's just a matter of time before she surpasses him physically. it's hard not to be sad every time i see her do something new that her brother can't yet do.
i'm glad you're back at the top of the rollercoaster right now. thanks again for your blog.