One Year Down the Road

One year ago, I wrote my last post on my old blog site. Through a dark comedy of errors, I lost access to it and try as I might I could not figure out how to stay on Wordpress, not for lack of trying, though. Throughout the year, I would go back to it- I tried to set up a new blog but was told "an account already exists with this email address, enter the password. Well, I couldn't remember it and it went around and around. Until I've come full circle and realized that I could just start over; I could learn a new site. I may not be as happy with it, or maybe I will once I play around a bit and figure it out. I'm not one for liking change, but I've had a year and I've learned some things.

If you're a parent of a special needs child or chronically ill child likely you've realized you may suffer from PTSD or CTSD (Chronic Traumatic Stress Disorder). As a veteran, I qualified for an intensive 16 week course of PTSD therapy. I don't do worksheets/paperwork so it had to be modified for that. I told the counselor that the one thing which would stress me out more was even more paperwork! This was not easy; many things came up, not just about Rett syndrome and its fall out, but things that happened long before, which conditioned my response to everything that came after. In fact, it was brutal, but necessary.

We (caregiving parents) tell ourselves, truthfully, we have no choice here; we must be there for our children. In the same breath, we acknowledge "this level of stress is not sustainable" and yet it is. It has to be until something fundamentally changes. Having a nonbiased person listen to your story and tell you that "no, it really isn't, but I'm here to help you figure it out," is a tremendous relief, at least for me. My support system is tiny, it's there in a pinch, but the day to day was on me; even when I've been hospitalized I received calls about care cancellations, etc. He took some of that off my shoulders. He made me set goals of self-care and when Katelin began to really respond to Daybue behavior wise and I felt guilty because there were days I did nothing beyond the necessary; he said "I'm ok with that. Hell, take six months, take a YEAR, you deserve and you need it." And that's what I did.

At first, I had no idea what to do with myself. When she was at her day program, I slept. Every day. Oh, the guilt. I paid someone to clean my house. I began to read again. I joined a knitting group again. I knit a scarf, it took months, but I finished it. I began folding the laundry- an overachieving accomplishment given the years I never had the time. Eventually, I cleaned my own house, one room per week. I organized our closet. These may seem like the minimum of keeping a house, but when you've lived your life for decades only making sure your child's needs were met and it took all your waking hours for that, these are the things you have to let slide.

I lost over 50lbs. This was a goal I set as my New Year's resolution of 2025. It took me 1.5 years, but I did it. I had the biggest cheering squad ever in the nurses and patients of the Infusion Clinic where I go every Friday. They saw me through my discouraged weeks when the scale didn't move downward by cheering that it didn't go up. When I showed up in downsized clothes, they complimented my "new look". They counted every pound as a marathon won. And now, I'm within my secondary goal of my US Navy days' weight.

All those things combined still do not equal the change in the dynamic of Katelin's and mine relationship. Yes, I'm still the caregiver, but now I also get to be the mom. We go to outdoor concerts, we go shopping and she sometimes chooses what she wants using an app for "yes/no"; we get our nails done and it's not an alligator wrestling match anymore. She sits there calmly, she uses her app to pick her nail polish, we laugh and the salonists love her quirky sense of humor. We eat out and I no longer have to worry she'll start screaming, but MORE importantly I have finally let go of the tension of expecting things to go south during any of those things. It's not always perfect, there are times things do go south, but I no longer freak out inside- waiting for the left hook, wondering if I can get out before something is broken; the panic, not embarrassment, sheer panic of worst case scenarios. That is what this year has given me- gifts beyond measure.

I know I am one of the lucky ones. I don't know if I could have done this if Katelin's behavior had not improved. I'm pretty certain it wouldn't have been possible. I felt guilty about that, too, knowing so many in my shoes just aren't going to get this opportunity. Still, for myself and even more for Katelin, I am grateful that I lived long enough to glimpse again the person I was before Rett syndrome and how it's combined so well with the person I needed to become because of it.