Daybue Trail- A Month of Easy
Posted on January 23, 2025 by melelllan
Getting ready to bowl
Anyone who’s know Katelin for a long time knows how much of a handful she can be. I don’t want to sugarcoat it- aggression, biting, headbanging, screaming for hours, throwing food and drinks, rarely calm for hours at a time; there have been so many days I’ve just cried at the mess, cried because I could never catch up-redoing the same things I did the day before. Never getting to putting the laundry away, never letting anyone just pop on in, rarely a clean sink, and the carpet was in a league of its own. I’ve covered my walls in 3″ and all the edges of anything I could find JUST so she didn’t have to wear her helmet every moment of every day in her own home.
But, THIS month, since Christmas, my life has been the easiest it has been since Katelin was diagnosed. She has self-entertained, laughed, slept in, not thrown a single thing (accidents have happened, but oops I can handle). She has screamed, but not for any length of time, she has headbanged but worked on deep breathing exercises with me and has been able to self-calm a good part of the time; she hasn’t hit me, scratched me, bit me or screamed AT me.
She’s handled transitions pretty well, we’re still working on that; she’s occasionally accepting that it is too cold to open the patio door or both doors at once (which is HUGE). She has been much more interested in the cat, petting him and touching him very gently and giving him multiple kisses throughout the day (so gently that he doesn’t feel the need to run, which is what usually happens).
The end result of all of that calmness is- I’ve put away all the laundry every time for a few weeks now; I get to tidy up every day; there’s always clean dishes; if someone were to come to my house unannounced, I wouldn’t feel the need to apologize. I can clean the carpet, I don’t have to vacuum every single day; I get to do a project once a week, like organize a closet or get rid of things she doesn’t play with anymore. I haven’t wept in desperation even once, since Christmas.
This is not to say I’ll be taking down the padding anytime soon, but for the first time in 30 years I’ve been able to breathe, to rest, to not be ashamed of the tornado damage on the inside of my home. I’ve read some books; I’ve begun to organize my poems and papers and pictures. I’ve even made meals from scratch, that she EATS! No boxed suppers for a while now. But the very biggest difference is I don’t feel the tension I have always felt when she wakes up and when she comes home; I don’t feel I have to be constantly on alert for that flipping of the switch that takes her from calm to Hulk in an instant. It still happens, but it is more easily quelled than in the past and she is being more proactive in helping herself get through it- she listens, we talk about what set her off, I tell her it’s not her fault, people have feelings, this feeling is not because of Rett syndrome but it does make it harder and she is so brave and strong. We take deep breaths together; she sometimes asks for a hug.
I have to say that I have taken full advantage of this opportunity to rest. I’m not nearly as productive as I could be, but I am now actually bored with resting. I can’t say what I am going to do with all this time I have now- time not spent in anxiety mode, recovery mode, complete exhaustion mode. This is a whole new adventure for ME. I get to have my own Daybue trail now. I’m not tackling any hard trails just yet, but I think a leisurely stroll is a good place to start.
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(20min delay)