Battle scars

You’d think after Thanksgiving I would be feeling grateful. And I am, really. For so many things. But that’s not the post I feel like writing right now. For whatever reason, here’s my “woe is me” post. Overall, I feel like I am in a much better place today than I was even just a few months ago regarding the girls' birth and Hannah's developmental delays. But just like the girls have some scars from their time in the NICU, I have mine too. Here are some of them:

I’m not the same person I was before this happened. No one is the same after having children. But parents of children who experience life-threatening illnesses or long-term disabilities have to work a lot harder to reclaim their sense of self in this new reality they’re faced with; a reality that isn’t at all what you expect when you sign on to have kids. I’ve been trying hard to reclaim some of my light-heartedness, spontaneity, sense of adventure and fun, but those qualities are buried underneath layers of worry and fear. It’s hard for me to relax, I get panicky about things I never used to get panicked about, and when it comes to the girls, it’s not easy for me to “roll with it” when our schedule gets disrupted. I constantly worry about their nutrition and sleep, especially with Hannah, for whom those things are critical for her to have the strength to work on her motor skills. It’s getting easier as they get older, stronger, and more independent. But I am forever changed by our experience.

Because of Hannah’s more intense needs, I always feel like I am not doing enough for either of my girls. I feel like I’m never doing enough for Hannah, in terms of at-home physical and occupational therapy. There is a never-ending list of activities, games, stretches, muscle groups, ideas, goals to work toward. And there is a clear limit to the amount of time we can spend on these things, as our day is usually taken up largely with dressing, eating, changing diapers, and trying to get out for some kind of fun diversion. And then there are the times when Hannah is sick, or teething, or didn’t get enough sleep, and trying to get her to work her body in difficult ways is near impossible.

And I feel like I am never giving enough to Isabelle, who because she is independently mobile is often left to her own devices as I figure out ways to manipulate Hannah or the environment so that she can fully participate. Take story time at the library for instance: All the kids get up and do ring-a-round-the-rosy, holding hands with their caregivers. I’m stuck: how do I hold both of Hannah’s hands so that she can stand up, and at the same time, hold one of Isabelle’s hands so that she can learn how to do it also? Inevitably, Isabelle is the one that ends up flying solo, left to figure it out for herself. After the first time we went to story time, I came home and cried to B that I couldn’t even teach them ring-around-the-rosy.

Because only one of the girls has motor delays, I’m constantly reminded of how different Hannah is. When I pick Isabelle up and feel how soft and flexible she is, it makes Hannah's stiffness and high tone that much more obvious. When I watch Isabelle move effortlessly from sitting, to kneeling, to standing, to walking, I can see so clearly how all of those transitions are either very difficult or near impossible for Hannah to achieve. When we go to a restaurant and Isabelle can hold herself up in the high chairs they provide you with and we need to prop Hannah up with sweaters or jackets and tell her to sit up straight so she doesn't lean all the way over to one side, I notice how weak Hannah's trunk muscles are. When we’re at the playground and Isabelle takes off for the slide and Hannah has to wait for me to take her where she wants to go, I’m painfully aware of how dependent she is on me for mobility.

I’m angry that this happened to us. It’s bad luck, and it’s just not fair.
It’s unfair to Hannah that she has to watch while her sister does what she so desperately wants to do: move independently and purposefully through her environment. It’s unfair to Isabelle that she often has to watch patiently while I, or one of Hannah’s therapists, give her sister the individual attention and assistance that she would probably love to have as well.

And it’s unfair to me. I don’t want to have to leave the playground where Isabelle is having a ball because my back is killing me from walking Hannah all over the place. I don’t want to avoid music class because I’m not sure how I’ll handle having one non-mobile child and another mobile one, both of whom will want and need my assistance and attention so that they can really enjoy the experience. I don’t want to have to think about any of the issues I need to think about that will never cross the minds of parents of typically developing kids.

I just wish this could all be easier. That we’d wake up tomorrow and Hannah would be walking, climbing, running. And all would be well in the world.