Monday, November 30, 2009

Max's hands

I've been staring at Max's hands a lot lately. They're getting so big. What happened to those pudgy baby hands I used to nibble on? I've also been watching in amazement as his hands do more and more. One of the biggest side effects of the cerebral palsy is that Max's hands are, alternately, either too tight or too loose.

Mostly, they're too tight. His left hand is more functional than the right one (since his stroke was worse on his left side, his right side is more affected). So Max typically tries to do everything with his left hand. "Two hands, Max! Two hands!" I'll say as I watch him struggle to pick up something with his left hand alone. He needs to be reminded to use the right one; it's often held tightly in to his chest, Napoleon-like. A doctor once said it would be his "helper" hand, and it's pretty much true.

Max is able to open both hands a lot more easily these days. He can't quite grasp a ball, but other things, yes. I loved seeing him hold that car above and run it back and forth. Lately he's been maneuvering a computer mouse, too.

Max has never gotten a pincer grasp, the movement that enables a child to pick up something using his thumb and forefinger. It typically kicks in when an infant is between eight and 12 months old. It didn't happen with Max, so grabbing smaller objects—say, a spoon—is tricky for him. But he manages: He'll use a cupped hand to grasp stuff then hold it in his fist. He also has trouble isolating his pointer finger, though he's gotten good at improvising that, too. He uses a knuckle to turn on the TV or push the water cooler button.

He makes it work.

As I watch Max's hands move, I sometimes think about how that's something other parents take for granted—I'm guessing many couldn't imagine what it's like to have a child whose hands can't quite do what his will wants them to. When Sabrina first held a rattle in her hands, I was amazed; I was so used to wrapping Max's fingers around objects for him.

As a baby, Max's hands were so tight and balled up. I remember Dave and I taking him to the mall once and strolling around. Inevitably, we started observing other babies. Especially their hands. "See?" Dave would say. "That baby's hands are closed!" We couldn't accept our reality. Or Max's.

Now I watch Max's hands and I'm filled with wonder that he is able to manipulate them the way he is.

I watch Max's hands and I worry.

But Max? He just does his thing, holding on any way he can.


  1. Max is going to just continue to do his thing...including amaze you and us every single day.

    I can totally understand your 'disappointment' if you want to call it that. Jonathan is seemingly fine...until you try and put a glove on his left hand. He can't keep his fingers straight, they automatically buckle when pressure is put against them. Makes me sad every time I see it. So we don't bother anymore with gloves...mittens only in this house! For EVERYONE!

  2. Isn't it amazing what these children can accomplish, Ellen? And we, as parents, have to learn about acceptance and reality, when they mostly just accept things, as is. I am constantly reminded about expectations and reality, when I see what Faith has managed to do. Way to go MAX!

  3. I remember how miraculous my daughter's development was after having my son (she's the second born). They pick up everything by osmosis -- effortlessly -- all the things our kids have to work so painstakingly to do.

    Very moving post.

    Has Max had casting on his strong arm -- or Botox? I realize the latter may not be appropriate if he has both tight and loose muscles. Cheers

  4. What a great post, Ellen!

    I find myself watching Connor's hands a lot too. We call them his "starfish hands" because his fingers taper down-- part of his genetic condition. He's able to do a lot more with them now too, though he doesn't have functional opposable thumbs, which makes gripping pretty hard for him.

    Connor kept his hands fisted for a long time too. It's amazing how they've bloomed open in the past year.

    Max is getting so big! Childhood is so fleeting, isn't it? Blink and you'll miss it.


  5. Wow - our journey's are so different, but reading this post brought out the same emotions and thoughts I have about my son's hands.

    He was born with a rare craniofacial syndrome that along with midface retrusion and premature fusion of sutures in the head, also includes fusion of some or all of the bones in the hands and feet. Aiden's fingers were fused at birth, and have been separated into 10 beautiful fingers in 2 surgeries. We're coming up on one year "post-surgery" - and we're finding his use of his hands more and more amazing each day. They will never be "normal" (he is missing one of the joints in each finger) and he may never be able to do certain fine motor things like buttoning a shirt or snapping, but he gets along just fine. And he is a blessing. :)

    Beautiful post - sometimes it is the little things that we find ourselves worrying about/caught up in. But in the end, I honestly think we'll find that with kids like ours, they'll prove us wrong every step of the way. Best wishes to you guys!

  6. Beautiful post, Ellen. Charlie's a lefty too! Make me nuts sometimes since they seem to put all the good stuff on the right side of toys.

  7. What a great post. Max is amazing! I love to hear how he manages to do things despite the limitations his body tries to set for him. He looks really good playing with that car. : ) Emily keeps her hands in a fist a lot of the time. I am hoping that changes as she gets older and she figures out ways to get things done.

  8. hay nothing stops him just like someone I know lol

  9. I love watching my daughter grow and change before my eyes. She also doesn't have much of a pincher grasp and her ataxia makes her hands shake so bad she can hardly do anything without knocking something over. But she adapts. She manages. She experiments and figures out what works for her, and not all of it came from a therapist. I am constantly impressed with her resilience.

  10. Great post! It is amazing what we can take for granted and also how our kids can adapt. I do appreciate and notice all the incremental changes now too in a way I never could before Oscar was born.

  11. Chloe's hands sound very similar to Mr Max's. Her spasticity is variable, so they're either floppy or tight, but usually tight, and especially on that right side. I know exactly what you're talking about comparing the hands to other babies in the mall. I swear, I did the exact same thing. It's hard to accept that something is "wrong," but at the same time, everything is just as it should be. I'm so happy Max is making such great progress! I'm sure you will never cease to be amazed by him. Never.

  12. Beautiful, beautiful post, Ellen. Emmett, too, "makes it work" and shows me everyday that he's forging his own path in the world.

    [Please exclude me from the give-away! I'm still in love with my necklace.]

  13. These children are amazing, aren't they? This is such a lovely post, the attention to Max's hands reminds all of us to be mindful. My daughter has long had a right-sided weakness/hemiplegia and uses her right hand as a "helper" hand. I'm always amazed at home much more she can do when REALLY motivated.

  14. Abby has low tone in her arms and hands and high tone in her legs and feet. Yet, Abby amazed me today by walking for 4 minutes unaided. I was surprised because Abby struggles to walk due to increased tone in her legs and feet. Unlike Max, Abby has floppy loose hands.

    I agree with what Elizabeth says, children are amazing. Like Elizabeth, I'm amazed how much Abby does when she is motivated.


Thanks for sharing!

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