This weekend, Max discovered blinking. We were working on his weekly book report and I think he needed a break because all of a sudden, he started to blink rapidly at me with both eyes and crack up. I did, too. He scrunched up his nose each time he closed his eyes, and I could see the movement took concerted effort.
I often wonder how it feels to be in Max's body. He has spastic four quad cerebral palsy, which basically means all of his limbs have some stiffness, along with the muscles in his jaw. The term scared the crap out of me when I first heard it when Max was a baby. Still, we learned it was not a prognosis. Max was able to bicycle his legs, an alternate movement that's the basis of walking. The therapists and doctors said Max had a good chance of being able to walk and he did, independently, on his third birthday.
Max's hands and arms are more affected by the CP. Grasping objects remains challenging, though it's improved over the years. He can't easily raise his arms up and rarely supinates them (which means turning them so your palms are facing up).
I've read that people with CP can have painful cramps and I worry that Max gets them, although over the years he has gotten better at telling us when something hurts. I wonder if he feels it when his muscles are stiffer or whether it's his norm and he thinks nothing of it. A number of times I've asked, "Max, do your arms hurt?" when they seemed particularly stiff and he's said, "No!"
When Max realizes his body has the power to do something, it's a thrill for us all. I can still remember how psyched Dave and I were a few years ago when he figured out how to blow his nose into a tissue. We don't take any muscle movement for granted. The inchstones still feel like biggies. Although Max's ability to slide the Monsters University DVD into the player has become less of a cause for celebration because he can watch that movie again and again (and again) as we learned this snowy weekend.
Dave and I have sweet memories of Max mastering movements: Feeding himself, giving kisses, walking up the stairs, dancing, isolating his pointer finger to tap on the iPad. This is the year he started giving hugs. He can't wrap his arms around me so he holds them straight and smushes his head and body into mine. I love, love, love those hugs.
The blinking isn't going to get Max into college or anything, but the fact that he's feeling it—and aware of it—is amazing. Dave and I kept asking him to do it; we all got a kick out of it. Maybe one of these days Max will master the one-eyed blink and charm the lady therapists even more.
My brother drank juice for the first time today, at fourteen! I know the feeling.ReplyDelete
That's cool! Apple? Orange? What? Max has a thing for orange juice.Delete
Yay Max! I wrote about what it's like living with a body that has CP here http://nisha360.com/2013/10/day-1115-world-cerebral-palsy-day-and-life-with-cerebral-palsy/ you might find it interestingReplyDelete
Nisha, your abilities (and spirit) are so encouraging to me.Delete
Good job Max!!ReplyDelete
Max says: wink, winkDelete
Max does not need to wink to win over a lady therapist or any lady!!!He does that naturally! His inchstones are wonderful and inspiring to know! Go Max!!!!ReplyDelete
You're right—I think his hair does it for him!Delete
Yay Max! Congrats mom! :) I get it. I took a video the first time Charlie held a toy. Moments like those are precious. I'm afraid to hope for them in case they never happen. When they do, it's overwhelming for me... to say the least. Hurray!!!ReplyDelete
Oh yes, as Nisha stated in her linked post, frustration is a common occurrence when it comes to these CP bodies of ours. As I've gotten older, the aches have naturally gotten more noticeable. I've taken to using a heating pad when I go to sleep, as it helps loosen up my stiff muscles after a long day.ReplyDelete
Massages are awesome. I'm looking forward to going to a fancy spa over the break and getting pampered. Maybe this might be something Max could enjoy either now or when he is older? I don't know how sensitive he is to touch... But those have helped tremendously in the past.
When my body is being particularly finicky, I think of the that post you wrote of the little boy calling Max's muscles "rebel muscles". Makes me smile every time!
Isn't pronation when the palms are facing down, and supination when palms are facing up?ReplyDelete
Um, yeah, oops. I shouldn't write this stuff at 1 a.m. Fixing that.Delete
I can finally play an A scale fluently! Next up: The E scale.ReplyDelete
(Look at the circle of fifths)
I totally agree. The little accomplishments are a big deal. Glad you are a mother that recognizes this and encourages your little man.ReplyDelete
Go Max. I wonder what it is like for Amelia. She has spastic one limb cerebral palsy aka spastic monoplegia. I dont always pay attention to the tiny achievements, only the huge ones. However this post has encouraged me to focus on the small bits of progress more often. They are just as wonderful.ReplyDelete