Why some things are just really hard

This morning I took Hannah and Isabelle to music class for the second time. The instructor is very low-key and friendly, and it's a casual environment with a small group of moms and kids in a big studio space about a mile's walk from our house. I really like that we've found something so convenient that is a safe and nurturing place for me to take the girls because as I've mentioned before, it isn't easy for me to try new things with them; the logistics are always hard for any mom of more than one kid, especially when one isn't walking, and especially in the winter.

But even in this safe place, it is still really hard because with each new thing we do, it's another reminder of how difficult certain things are for Hannah that other kids can do with such ease.

Different aspects of this class are a challenge for Hannah. In general, in a new environment she is more tentative and unsure of her body and she has a harder time with things like balancing in a sitting position. She is also more prone to being startled by unexpected or fast-moving visual stimuli (like kids running around her with musical instruments in their hands). This class is also very movement-oriented, so much of the time the kids are up and dancing, banging on instruments, running around with scarves, moving in different ways to music. When it's time to get up and move, I always struggle with whether or not to hold Hannah's hands so she can move herself or hold her in my arms. I try to ask her, over the din of the music, whether she wants to dance by herself or have Mommy hold her (she's usually pretty good about expressing her preferences). I don't want to deprive her of the experience of moving around herself but she seems to enjoy when I hold her. Then there's Isabelle, who wants to hold both of my hands and dance around with me. Today I put Hannah on the floor while Isabelle and I did a jig and it felt so effortless and light and freeing. And then I looked over at Hannah and saw that she was struggling to keep herself sitting upright and I immediately felt so sad that I wanted to cry.

I fought the urge to cry several times throughout the class, as so many of the activities were impossible for her to do without my help. But Hannah didn't seem sad, just tired and content to sit.

Then when we got home and after she had a hit of some milk and crackers, she was crawling all over the floor, pulling up at the cabinets and kneeling in front of her toys, chattering up a storm.

It's so hard. At home, Hannah is a vivacious, energetic, social, fun-loving kid who can move around pretty well with some minimal help. At home, we know the parameters of her disability and we are well-versed in what she can do well and what she can't. When we go out to different kiddie activities, Hannah gets quiet, easily tired, and much more affected by her motor difficulties. She isn't clingy or anxious, just much more tentative and content to observe.

Some days I can deal with this and some days it just breaks my heart. Today, maybe because of the gray skies and cold weather and lack of sleep, today was a heartbreaker.

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?