Adjusting to a new normal has become a regular occurrence around here. Four steps backward, one step forward, and a dozen steps sideways makes for an interesting dance on paper and it makes for chaos in real life. I try not to compare myself to others in similar situations, and yes, there are so many who are, but I stink at this some days. I get it, maybe we’d all stink at this, with a few outliers doing worse, so I can feel a little better. But still, I stink at this some days.
I don’t explode as much as I think I’m going to which becomes a win on those days. I haven’t grounded one of my kids from life for a month yet, or left my dog in his cage all day, all in a reaction to my anxiety. I can tell when my patience is out of gas and even know how to step away for a few minutes most of the time.
If only medicine worked the same way everyday. Some days I wonder if Tiffanni even needs it and others I want to crush the entire bottle up and mainline it into her carotid. Should she take it for her or for the rest of us?
The “science” behind getting the right medicine combination feels more like a cross between eenie-meenie-miney-mo and necromancy. Huntington’s affects movement, mood, and cognition, but we’ve yet to get the concoction that addresses all three in a positive way. We get one symptom right and the other two are worse for the wear.
Lately, movement is as good as I can remember it. We’ve gotten a mixture of pills that has somewhat stilled her erratic movement, so much so, that people have made mention of it. “She’s doing so much better!” So I smile and go along with the optimism. I’m not sure what my role is in those moments usually. Yes, her movement is better, but there’s a tradeoff. Mood and cognition have taken a hit and I’m stuck with the responsibility of making the decision- what’s right for this family? Is it better that she stumble through the house, falling and bruising daily while her mood strikes a balance, or do we still her stagger and allow her to cry all day, connecting events from an alternate reality that her brain lives in?
All of this has proven too much for my brain over the last couple of months. I feel a geyser rumbling on the inside conspiring with my emotions to explode at any moment. What used to settle the inevitable eruption, a jog or a shower, a movie or a book, lacks the alleviation it once had.
So, I’ve resorted to prayer. Every night after a trying bedtime routine, I feel like I’m a dad of a young child again that has to check for monsters in the closet and under the bed, retrieve a glass of water, read a bedtime story- anything to belabor the impending end of the day. We check each item off of the list and then I sit down beside her, lay my hand on her head, and pray. Nothing elaborate. Nothing revolutionary. In fact, it probably has more to do with the slowing process than the providential one. But in those brief moments, my soul smooths. The tempest’s waves of the day fade briefly, and regardless of what Tiffanni has done that day, that hour, the chaos quells, for a moment.
Does prayer change God or does prayer change me? I can’t answer for the creator of the universe and honestly feel presumptuous thinking about it. But I am certain of one thing. I know it changes me. At the end of a tough day, a challenging day, to say those few words- slowly, thoughtfully- shifts things. I don’t do everything right, but an open invitation into a partnership with God, His bidding, my answering provides a fresh start. Not from scratch, but back a few steps closer to the “I do”. Maybe it’s just another trial concoction, or maybe it’s just a long time coming.