We were at our friends' house for New Year's Eve. We see them maybe a couple of times a year, and they always notice the progress Max is making. "He's talking so much more!" Dawne said. "And his walking is great!"
I'm always thrilled to hear these comments. I know, of course, how well Max is doing, but it's heartening to hear other people acknowledge it. They don't even know the half of it; mostly, people notice the biggie stuff, like speech, cognition, agility. Later on, we started talking about Max and I told them he's been using the pointer finger of his left hand. He's never isolated it, but now he's pointing and pressing and touching his iPad screen. It's a Really Significant Thing. This skill alone will make many things easier for him. Although I'm not particularly overjoyed at the part where he likes to make water gush out of the water cooler.
"Wow, I never even thought of not being able to use your finger," Dawne said, and I could see she got what a big deal it was.
I'm totally comfortable educating people about cerebral palsy—the challenges it brings, the meaning of progress. Because I want them to understand that it isn't just the biggie stuff that's important, like being able to walk or talk, but smaller yet significant things, too. And I want them not to feel so sorry for Max.
Max just keeps coming along—not in leaps and bounds, but one step, one word, one finger at a time. And that's every bit as amazing.
Go Max go!
ReplyDeleteDamn, woman! You are always so uplifting. I've been bugging about a PT telling me my daughter won't get much PT at school because she is moving so well, and I get stuck on how I want her to move perfectly, not because I want her to look perfect but from my own injuries/ailments what-have-you I know that misalignment breeds discomfort. And I'd like to smack myself for not just focusing on how well she is doing. We are working on the pointing and I know why it excites you. I really need to be less angsty, which is why I keep coming back here! Thanks again. I love Max, and you.
ReplyDeleteWish I could bottle your determination and share it!
ReplyDeleteAnother nice thing about folks like your friends -- since you don't see them often they really are able to see all of the progress that has been made. Sometimes hard for us parents since we see our kiddos everday.
ReplyDeleteThanks for sharing!
Do you have any idea what part of Max's abilities are from the stem cells? I enjoy reading about Max and well he is doing. I even enjoy reading about Miss Sabrina wearing his clothes. Thanks for sharing.
ReplyDeletesg-KS
Tell me about it! There are days, forgive me for saying so, that I'd just like to smack the smug off of the hypervigilant helicopter parents of way-too-precocious over-achievers who don't understand that everyone is on their own road! I feel sorry for their kids, too--they sometimes have that "Uh oh, Mom/Dad wants me to PERFORM, and god help me if I get it wrong" look!
ReplyDeleteAll progress is great progress, and the achievement is sweetest when it's a big obstacle to overcome!
Well said! I agree that making progress is the key, no matter how much. The important thing is to keep moving forward (though somedays it certainly feels like we are going backwards at my house!_
ReplyDeleteThat's wonderful! Yay Max!
ReplyDeleteYou have no idea (or maybe you do...) how much I love reading about what he's up to, in to, on to, etc... He gives me hope, and he's so dog-gone cute ya can't stand it!
I know exactly what you mean. I am equally thrilled with our Al.ex who is also now isolating his pointer finger to play "Fun With Words" on his iPad. It's a miracle to me.
ReplyDeleteThat's how I'm feeling right now about Charlie and his ability to rotate around while sitting instead of just toppling over. Never thought I'd be that excited about it, but it's really changing things.
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