Evolution

I yelled at my mother this past weekend. Not my finest moment by any stretch of the imagination.

It was pretty much a given that something would get to me after typing up a post about how accepting I am of Charlie’s disability, and this past weekend something did.

It started on Thursday. Charlie had a Feldenkrais session and at the end his practioner noted that “he was trying so hard to talk.” That little phrase hit me harder than I expected, but I brushed it off in the process of getting one disabled preschooler and two infants out to my car.boy in wheelchair

Two days later my mom made the same observation with a smile on her face, and I lost it. I yelled at her to just stop saying that.

And why? I’m still not exactly sure. I mean, I should be excited to hear this–my mostly silent boy making attempts at communication.

But it feels the opposite. I can do nothing to help him with this. I can’t move his tongue for him, I can’t make it easier to vocalize. I have no choice but to sit here and see him struggle to do something that comes effortlessly to most. I’m helpless. A part of me wishes that he wouldn’t even try because it would hurt me less. Great mom, huh?

I can accept that my ideas and thoughts about the future will be different than what I thought. I can accept that there are things that my child will never do. What’s harder is accepting that there are things he wants that are out of reach, things I can’t give him. That’s the hard pill to swallow.

boy in wheelchair bording school bus

 

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Comments

  1. That is a hard pill to swallow. In the movement department, Sam has – at times – seemed umotivated to move. And that scared me. Now, though, I see the motivation, but I also see the ‘she just can’t do it (yet?)’ and it hurts my heart more than the previous stuff. . . b/c she WANTS it. She KNOWS what she WANTS her body to do and it just won’t cooperate, and I can’t take that away. And, that just hurts. So, I don’t have any wisdom or comfort, just a general “I get it.”

    • Yeah, I’m a lot less phased by “unmotivated” than I am by “wants to and can’t.” I guess we all just want to give our babies the world.

  2. As a mom of twins, one of which is neurotypical (aside from ADHD) and everything comes effortlesly to him and one which suffered brain damage and has mild CP and a host of other issues, I can say, that in life, we, even as children, are denied a lot of things. There are tons of stuff we can’t do that come to others with little effort… and it’s ok. It’s life.

    It is a knife to the heart when we, as parents, see our children struggle for something BUT I think in the grand scheme of things, it’s good. I see John, unable to run like the other kids (he now walks after 4 years in therapy) and him realizing it and it hurts… I see him unable to control his hands as he should, unable to draw or write like his peers and his teacher last year being an ass about it and I wanted to strangle her.

    But I try to take the good first, the bad last… He is TRYING… and as long as you try, you WILL succeed!! I say “he can’t control his hands YET”… “he can’t run YET”, “he can’t program his movements YET”… he has beaten the odds, he was born ALIVE, he spent minimal time in the NICU and he is gifted in other departments… the sky is the limit and even if he never gets there, I know he TRIED.

    True, I wish I could bring down the Moon for him… but I can’t…and in the long run, I shouldn’t. But I CAN and will cheer him on and celebrate even the tiniest step to get there…
    You are a GREAT mom but you are also human. You and Charlie are doing GREAT and I KNOW Charlie will get there, you’ll see. And the tears along the way are normal and natural and so is the anxiety…and we are here to cheer YOU on :) You are doing a great job!!

    Hugs,
    Tina, mom to John and Cody (almost 6)

    • Tina:
      You have an amazing and wonderful attitude, and I can see that everything you say is true. I guess I just need to put it in perspective.

  3. Okay. Now you are sounding like a defeatist. Like those Dr.s that said Charlie didn’t have a chance. That Charlie could never do all the things that he has done. He is an amazing child. And you are an amazing mother.

    I know it hurts. I know that you have struggled and agonized over the small steps and we all have been right there with you. WE, your family, Your friends, And Us Bloggers and Readers, every step of the way. We have cried with you and cheered with you.

    It will come, he will be able to vocalize one day. Hang in there. He will do it.

    Go Charlie Go!!

  4. Katy,

    go easy on yourself. you have a TON on your plate right now. You are my hero, frankly. I sit here in my pity party watching you from afar and I don’t know how you do it.

    Don’t beat yourself up for all of this. It WILL happen, It will. I know it. And in the meantime, you need a way to let it all out—all of it. Or it will eat you up. You are entitled to your feelings. I’m glad you shared them here.

    xoxoxo

  5. Oh, Katy, this breaks my heart because I know how it feels. Feeling helpless isn’t an easy feeling for any mom. And you, are a GREAT mom. Someone I’ve never met, but still care about and root for and look up to all the same. It’s okay to feel these feelings; sometimes one little phrase is all it takes to open the wounds again. Forgive yourself and keep on keeping on (I don’t need to tell you this of course, as I know you will).

  6. Thank you, thank you, thank you. Gotta keep on keepin’ on–some days the little things get you down, though.

  7. You are not a defeatist, you are human! Every single one of us wishes we could change certain things for our children, make life easier for them, but you certainly have to deal with that more often than most, I would imagine.
    I watch my own perfectly normal but ex-TREMELY emotional four year old still throwing temper tantrums, even occasionally in public, and feel this yicky blend of embarassment- grow the hell up already!- and compassion, for I know how hard he struggles to control and express his feelings. And yes, I mostly just wish he would stop it because it would be so much easier for the rest of us! But I know it’s HIS issue, his struggle, and so we hang in there and talk and talk and TALK about feelings and appropriate reactions, etc. But it’s hard, when there is something that seems so effortless to other children and so huge for your own kid. You’re allowed to feel down every now and then! Big hugs to you.

    • this comment is why I love blogging–because you can take your very typical children and show me how things aren’t really that different. We all want the best for our children and we all hurt when they struggle. Thank you so much for the perspective, Sarah.

  8. Gosh Katy. I could write this same exact post. Over the past few weeks the therapist have told me so much that Carsyn wants to crawl sooo badly and I know that, but it is hard because he is so frustrated. It hurts me to the core. To know he wants something and can’t do it. There are times where I am thinking like you think. Where it would be easier if he didn’t want to. Praying for you and Charlie always.

    • Thank you, Sarah! You know, Charlie wiggled and wiggled for ages before he could crawl–and now I take it for granted. It’s an uphill battle for our kids and I guess I should just be glad that Charlie is made of tougher stuff than I am.

  9. I’ve been reading your blog for awhile now and only today did I want to say, “What?” You are right about a lot of things, beginning with I can’t possibly understand how you feel or what you are going through. No one can because God made every single one of us different and unique as individuals. Yes, many of us have many things in common, including disabled children, but the bottom line is every single case is unique, so no one person completely “gets it”. In addition, we all have different ways and resources for dealing with whatever we have on our plate at any given time. The playing field is not level, never has been, and never will be. Since Charlie is your first born, it is quite possible that he thinks that the difficulties he experiences are completely normal. It is what he has always known. There is no way that he knows that other children do not also go through what he is going through. Please acknowledge that he is trying to communicate because this is obviously a milestone for him and deserves celebration. If you are unwilling to accept this, regardless of how difficult it may be, it will surely be a frustration to him because he has begun to understand that verbal communication is one way that people relate to one another. If it is so obvious that his therapist and your mother both mentioned it, then he is ready to be encouraged and cheered on. You are his biggest cheerleader and you know what a marvel he already is and how many things he has already accomplished. I’ll be cheering from the sidelines for both of you (actually, for all of your family).

  10. Oh, Karen! I am VERY supportive–or, I try to be–one is never completely sure that they’re doing the right things. Whenever he makes sounds I tell him what a good job he is doing with talking, and I ALWAYS respond to the sounds he makes in a conversational way–much the same way you talk to a baby. I guess what I mean to say is that I don’t want to talk about talking. Or think about it too much. Thinking about it makes me wonder how I can help, and then I wonder what I should be doing, and then I realize there’s not much I can do. . . it’s a vicious cycle. And YES! you are right–Charlie doesn’t know that his struggles are different from everyone else’s and honestly, I believe that we all have struggles. I just wish I could make this easier for him.

  11. I think you’re one of the most emotionally (and otherwise) together people I have seen in blogworld and in the world of special need parenting. The fact that you feel this way is therefore completely valid. And I’m not saying that feeling less sad about it isn’t better! Hang in there!

  12. I think I know how you feel. For me, at least, I think about it like this — I have to adjust my hope for Phia in certain areas so I can move toward acceptance. For example, to accept her wheelchair, I had to adjust my hope and accept the fact that she would not be walking (that year, at least). And then the wheelchair was okay — good, even. If I continue to hope for things that are utterly unrealistic, it only makes me depressed and down. I’ve had so many hopes shattered that now I cling to realistic hopes that can help us all be excited about her progress (though I would gladly welcome any unexpected miracles). For example, I hope she doesn’t have a seizure today. I hope her speech continues to improve (she talks a small amount). I hope the scissoring in her walker will be minimal the next time we help her step. I hope she will be able to learn and progress every day. We cheer these accomplishments and hope for more, but I’ve definitely adjusted my expectations, and like you, don’t really like to talk with others about things outside that sphere. That said, I will be happy to hope for you and Charlie that he will be able to develop some (or lots of) speech! :)

  13. Max is eight and it still pains me, too, when people say “He’s trying so hard to talk!” At this point, I’m pained for a different reason—Max isn’t just “trying,” his slurred speech IS his way of talking. This is what he will sound like for the rest of his life. Well, aside from when the iPad does his talking for him!!!!

    I know you know but… Charlie is still so young. As his core gets stronger, more sounds should come. So while speech in and of itself is hard for us to move along, all that amazing stuff you are doing to build up his core strength is helpful. Think about that. OK?

  14. I have a question. I don’t want to come off as acting like I know what’s better for your kid than you because DUH, of course I don’t and that drives me nuts. But I was reading old posts of yours where you said Charlie wasn’t big on books, and I was wondering, if that hasn’t changed much (I haven’t read a ton of new posts yet), have you ever tried audiobooks for him?

    Like, Lemony Snicket’s The Composer is Dead has a CD that has all sorts of music on it and I read in your older posts that Charlie loves music so it might be a really good fit for him.

    Okay, um… that’s all. I was just thinking about that and I’m a tota lurker so I’m going to go crawl back under my rock now…

  15. there will always be moments that the grief and mourning of the child that could have been will surface. Take the moment allow it to be and then move on.
    Everyone, everything struggles with something. If he is struggling to communicate means that he wants it. Focus on the milestone and not how far he has to go to get it.
    Just like a caterpillar coming out of a cocoon there are simply somethings that a child must figure out for themselves.
    Yay Charlie and yay you Mommy because you are there doing what you allowing him to feel confident to do what he does.

  16. I do like Sarah’s comment, and your response. We ALL struggle with this but in different ways, as parents. I want so badly for B to be able to do subtraction as well as the addition on his math homework but it’s just NOT clicking for him right now. And it’s hard for both of us. In other words, I can relate, in a different way.

    Love you…

  17. I’m so glad that there are already 23 comments chock full of advice, because I really wish I could think of something to say that would make it better. I’d probably react the same way. I do know that we all get frustrated when faced with situations and circumstances beyond our control. I hope your mom is understanding of that. On the bright side, go Charlie! He’s been able to accomplish so much; this one might take a little longer but I have no doubt that he’ll get there.