Stand up

I want you to do me a favor. Think about what exactly you do in order to get up from sitting on the floor. Try to think it through, in steps, like you would explain it to someone who didn’t know how…

Kind of hard, right?

If you are an able-bodied person these things tend to just sort of “happen.” I find it is a little bit like the feeling when you have driven yourself home along a familiar route, but can’t remember how you got there. Even if you have a young typically-developing child who is just learning how to do these things, you likely spend a short time marveling at your little one’s ability to sit up or crawl or take a step…and then it is on to the next thing…

With Ezzy each little movement, more precisely each orchestration of movements, involves a painfully slow process. It took a year for her to be able to balance her head if you sat her up, about the same to lift her arms. At 18 months she could balance in a seated position, but it she blinked she would fall right over without protective reflexes and she soon gave up trying at all. Around 2 1/2 she started doing a modified army crawl, dragging her little body with her elbows. In six months this skill has not progressed much. She still cannot crawl on hands and knees.

Mind you, I am not complaining. Not one bit. I feel so blessed that she is progressing at all…no matter the pace. And I am thrilled with each and every little thing she can do. But I want you to understand what each of these steps means to us…and for her. Because I often feel like someone hears that she has a new skill and they seem to jump forward to “What’s next?” “Will she walk, then?” And for us it is really about staying in that place of marveling at what she is doing…because we will likely hang out there for a LONG time…and we just pray she doesn’t loose the skill after a bad seizure or from fatigue or from plain-old Ezzy mystery.

We rarely think about “what’s next.” And while I have tremendous hope that she will walk some day (and we work hard with her to make it a possibility), it is one of the skills that I think about the least, because, frankly, not being able to walk is not as scary compared to some of the other abilities we worry she might not gain (or could loose)…I worry far more about her developing a flexible communication system so she can “talk” to anyone anywhere anytime. I hope that she will eventually be able to even just taste some foods–so she can get the sense of excitement and social engagement around a dinner table. I fear her loosing her happy demeanor…because this is how she gets through the tough stuff. I worry about her feeling isolated and frustrated than any physical ability. But more than anything, I am afraid that she won’t be safe…from a seizure, from aspiration, from infection.

It seems that her slow physical progress comes down to a few things. First there is her low tone. I have written about this in detail before but basically it means that it is difficult for her to move her body and to use her anatomical advantage. This means that she moves less and, therefore, her muscles aren’t in use as much as other kids…this has an effect on her strength and muscle memory. Second there is a problem with “motor planning” meaning the connection in her brain between wanting something to happen (for example “move hand”) and making the connection to execute the action. When you add up a number of actions to coordinate (e.g. listen to an instruction, understand it, decide to execute, move multiple body parts in a particular order, exert force, etc.) it is a huge and frustrating undertaking for Ez… We know that under perfect circumstances Ezzy is understanding what is expected of her, she just cannot always make it all happen.

But, all that said, she has been making amazing things happen lately. Two weeks ago she was able to get herself into a seated position from the floor. She has not repeated this, but ever since her seated position has been very strong. She is balancing very well in seated position–even correcting herself and catching herself. She has also been standing up while leaning into the couch. I need to be right there ready to catch her, but I’ve been able to let go for up to 30 seconds or so…and this is huge considering that not all that long ago she would bear exactly no weight through her feet.

Then yesterday her physical therapist came over and taught her the movements to get from seated to standing position (leaning on the couch). She needs help bending both legs to one side…but once she is there, she can roll over her calves into a high kneel. Totally unprompted she shifts her weigh to one knee and places the other foot under her. She then needs support and something to push up against (and a bit of a boost) to transition up to standing.

She did this over and over and over yesterday. She wanted to stand the whole time…even as her legs were trembling, she shook her head with a firm “NO!” to sitting down. This morning she got right up and wanted to do it more. I could already feel an improvement in her strength.

As so many times before, I find myself totally in awe of my child…completely humbled by her determination…and so very aware that I know only one thing about her development: That she will never cease to amaze me.