How is Katie?

If I had a nickel for every person who asked me that? I’d be a pretty rich woman. The emphasis lands on different words depending on who is asking and what they know about her situation. It’s pretty obvious that something is up. She doesn’t go with us a lot of places. Ben and I or Ben and P go out and the other parent stays with Katie. Some of this is truly for convenience. It is a pain in the butt to wrangle two kids at the gym when one is slippery from a swimming lesson. It’s a lot easier to send one kid with dad and a dog to the vet rather than all of us trooping over (though next visit every member of this household will be going to see Dr. Chip — yay us).

But then there’s the other times. The times where it’s not so much about convenience and more about accommodating the child Katie is. There are things that Katie simply cannot or will not tolerate. Sudden loud noises, for example. This includes the cart area in most grocery stores/big box stores/home improvement stores and so on. It also includes just about anywhere she can hear a train (so, walking in our neighborhood has to be timed to avoid the train). Malls are a special thrill when they’re busy. If it’s empty, she’s fine; if not, no thank you. She likes restaurants unless they’re really, really loud. So, Mimi’s for breakfast, no problem. Cheesecake Factory for any meal? Big problem. And she doesn’t like church. It’s not ideological, she doesn’t like the organ. And our music director/organist is well-known for his flourishes. He plays beautifully, but those flourishes are LOUD!

She walks on her tip toes about half the time. She does better if I put her in shoes, but there is a lot of tippy toe walking going on in this house. I really don’t remember Ben doing it this much. At first I thought it was a novelty thing, but it seems to be increasing as she goes along, not decreasing.

And then there’s the textures. God help us with the textures on her skin. She wore a new shirt about a week ago. It was made like another shirt she has and loves. While she was playing, I looked at her back and I realized that there was a little bit of a rash. I talked her into trading for a different shirt, but she had a raised, red, bumpy rash on her back that looked hideous for several days. She hates baths. Hates them. Even with the microfiber towels and the muslin washcloths and the special soaps. She hates them. It’s an exercise in screaming from the time I put her in until the bath is over. She stands and screams through the whole thing. It’s to the point that I’m the only one willing to bathe her. She does not like much of anything on her head. She does have this straw fedora that I got her on a whim that she loves, but otherwise, no hats.

But, she’s smart as a whip and learns extremely quickly. She hears Ben practicing a poem for school and she can learn most of the words, too. She’s learning her ABCs and her numbers. She’s willing to try almost any food we put in front of her (except peas, Katie does not like peas). She likes to play dress up. Mostly, she adores her brother as long as he doesn’t try to hold onto her for too long. She likes to be able to move. She tried to self-train, but it didn’t take. That’s okay, she’s very young, but she liked the pull ups a lot and wants to keep wearing them. This doesn’t bother me so we do let her.

Her pediatrician isn’t worried — yet. Though, she refused to say one single word in front of him. She clamped her mouth shut and just stared at him with wounded eyes. We all get the wounded eyes at times. She doesn’t like it when we raise our voices — any of us. During the month of November, she’ll have appointments with her ophthalmologist, her neurosurgeon, and her reconstructive surgeon. Assuming that they’re all comfortable with her progress, she’ll move to every other year with the neurosurgeon and the reconstructive surgeon.

The bolts are visible. If her hair is pulled off her face, you can’t miss them. Her head looks great, though, and that’s something. But we worry. It’s hard to let her go into the play center at the gym because we worry about her falling or hurting herself and them not knowing about her head. P worries about her being in the nursery at church for the same reason. I’m trying to convince P (and myself) that putting her in Tiny Dancers when she turns two will be good for her. And I think it will.

So, that’s how Katie is. She’s strong, opinionated, focused, determined, and amazing. I’m also worried because instead of starting to fall away, those behaviors of hers that could be a sign of trouble seem to be getting worse. She’s going to be a smart one, but the rest of it? We’ll have to wait and see; hope and pray; and, work with what she has and help her navigate what troubles her. Me? I’m going to pray for patience (way more than I already have, to be sure).