Unpeeling the developmental onion

Seeing Hannah and Isabelle standing up next to each other, moving around the house together, is amazing. I don't know who's more excited: them or us. Hannah has been doing SO great with pushing the wagon (she's a little less interested in the walker but as you can see in the picture, she does tolerate it for a little while). I never thought we'd see this day. For such a long time she was too tentative and cautious and disinterested in doing it, and now we just put her behind it and off she goes!

I think when you parent a child who achieves milestones much slower than other kids their age, you are so much more aware of each individual step in the developmnental process. It is painfully slow and trying on even the most patient of people, but it is also magical and mystical and makes you really appreciate how incredible it is that our bodies and minds can do what they do. With Isabelle, we like all parents and were so excited by each step of her development and cheered her on along the way (we still do!) But with Hannah, it's like a slow-motion version that magnifies all of the separate pieces that must come together in order for her to achieve a motor milestone. And not only do we see each one of those pieces so clearly, but we can also see the ripple affect of that achievement because it has been such a long time coming.

Two specific examples: First and most obvious is the sheer and complete joy the girls express when they are both up and about as they are in this photo. They squeal and giggle and are so incredibly excited that finally they can share the perspective of being upright and standing. But another example unveiled itself to me today while Hannah was pushing the wagon into the dining room. When she got next to the staircase, she stopped and put her hand on the banister, tapped it and said, "What's that?" We walk by those stairs several times a day but always with someone holding her and so she knows what the railings of the banister are, but not from the perspective of someone standing upright and walking by it.

How incredible that she is going to start experiencing her world in a whole new way, and because her language skills are so far ahead of her motor skills, she can tell us what that is like. I am so grateful for the opportunity to watch this all unfold.

Achieving independence

About six months ago, we started talking about the possibility of getting Hannah a walker to give her some independence while she was still putting together the pieces needed to learn to walk. For a long time, these discussions made me cry.

When Isabelle started walking at around 18 months (15 months "corrected"), B and I figured Hannah might be about six months behind. She still needed to master crawling, pulling to a stand, and cruising. The therapists reminded us that there were many things that needed to fall into place in order for a person to walk on their own. Not only the attainment of physical skills, but also body awareness, balance, and coordination, all of which seemed to be challenging for Hannah, as for most kids with PVL. We thought, "that's ok. She'll get there. It will just take a little longer."

Slowly we realized, Hannah's achievement of independent mobility was going to take awhile. Maybe a long while. And we started to worry. Will it happen at all? Will she need assistance (i.e. a walker, a wheelchair, etc.)? When and if she finally does walk, what will the quality of her gait be like?

Acceptance is a funny thing. As the "what-ifs" start to come true, you move through different phases of denial, anger, grief, resignation. Until finally, you get to a place of acceptance that this is where you are, and where you're headed. Not where you thought you'd be, or had any interest in going. But here you are. Trying out walkers and gait trainers and hoping that maybe, with a little luck, your kid will walk by the time she starts preschool.

I'm so glad I'm finally in the acceptance phase because frankly, it's a lot easier of a place to be. But it took a long, long time to get here. And occasionally I lapse back into that dark, sad place where I wonder why did this happen to us...and how easy life would be if only...and how will we get past this...

But mostly, I accept that this is what Hannah needs to get herself moving, and if we can find a way for her to gain some kind of independent mobility, at the end of the day that is what's most important. Especially to her.

So here is Hannah trying out her new walker. I think it's called a "reverse-K" and it has large wheels at the front and smaller ones at the back. It also has a support bar across the back that helps her to keep a straighter, more upright posture.

I think she likes it, don't you?