I feel as though I am on the edge of a precipice, yet frozen in this moment. There are important changes coming, and yet, I cannot fathom anything past today, anything past the endless cyclical sicknesses that have plagued our home this year. Tomorrow is officially my first day of classes, although my live, in-person classes don't start until Tuesday. I have no idea as to how this new challenge is going to fit into an already full life, I can't even devote the brain power to project a version of this future that is nearly the present.
As I've said many times, KayTar's district transition is soon. On Saturday night, Josh and I went out on a date. He asked me about the transition and logistics, because honestly, we don't always talk about these things. At the end of the day, we are happy to fall into bed together and watch TV or otherwise occupy ourselves. At the end of the day, as we listen for the sounds of vomit over KayTar's monitor, the very last thing I want to discuss is the ins and outs of KayTar business. He's an involved dad, don't get me wrong, but KayTar's care and schedule is my full time job. I'm her administrative assistant, if you will. I was describing the process to him and he stopped me and said, "No, I don't mean that. I mean, how is it going to WORK? How are you going to drop her off with strangers for three hours a day in a new place? She hates new people." And it knocked the wind out of me completely. Good God, I have been so occupied with the thought of qualifications and services that I haven't put an ounce of thought into how she is going to handle this. It took her 6 months to stop screaming through the entirety of each session of physical therapy. That was just one new person, with me present even. How the hell is she going to handle this? And I was up for hours thinking about it that night. How did I miss this part? How have I not planned it? Prepared for it? We haven't attended church in over a year because KayTar would get so upset in the nursery that she vomited on herself and the worker without fail. I'm supposed to leave her with strangers for several hours each day? I just don't know.
And yet, KayTar hasn't seen a therapist in close to a month, due to holidays and illnesses. Illnesses. She isn't in daycare, she isn't exposed to other children frequently and still, we are almost always sick. Instead of the germs traveling home through BubTar, she will be directly exposed to them. With as often as she is ill already, I can't fathom that increasing. Even if she qualifies for services, when will she attend to get them? Is it going to be difficult to bounce between the classroom for a week here and home a week there due to fevers and strep and respiratory crud and such? And her episodes? She's awake until midnight quite frequently, because she just can't sleep earlier, how will she wake early enough for school each day? We have a strict policy on not waking her before she is ready (unless there is a necessary doctor's appointment) because she had harder days when we do. More light sensitivity, higher episode predisposition, things like that. Again, I don't know how she will handle this sort of transition and schedule. We're very respectful of her boundaries and she thrives...when she's forced into a situation outside of those boundaries, the results are not always so pleasant. When I was working and she was in daycare, I NEVER got through a week without being called to the daycare to pick her up due to illness or without having to call in sick. And this was before we knew the whole story.
We are also approaching an attempt to wean her from the bottle. She has been gnawing on the nipples and I worry it isn't exactly safe for her to continue drinking from it. I can't explain how this transition worries me. The child has a will of steel. You've seen her stand her ground, she'll call your bluff every time. Earlier this year her bottle manufacturers changed their nipples. She stopped drinking, just because the nipple was a little different. I had to get friends from other areas of the country to look for bottles for her with the "right" nipple. We stockpiled and were saved. She doesn't grasp concepts like the Bottle Fairy and various anecdotes that can be used to help transition typical children, she cant understand the reason she needs to give it up at all. She is not one of the "she'll drink when she's thirsty" kids. Just like she's not the "she'll eat when she's hungry, she won't starve herself" kids. At least 75% of her calories in a day come through the bottle in the form of milk or Pediasure, mostly. Some days she eats only a single jar of baby food, sometimes as little as 35 calories. 35 CALORIES IN A DAY. When we were on vacation she had a single yogurt in 3 full days. If it wasn't for her hearty drinking, she would be in much sadder shape. I hate, hate, hate to rock this boat at all. It feels like a gamble and I'm not much of a risk taker. I don't like playing the odds, especially when losing isn't an option.
Things are so manageable with her most days, our life so routine, so reliable, that it is easy to forget how precarious it can be. Transition is the enemy of routine and routine is what gets us through. We've learned how to function here, within these parameters, and I think a season of relearning is approaching. New routines, readjustments, new challenges. And still, here we sit, the sick and feverish little dear asleep next to me in her small papasan...living every day as though it is the same.