Monday’s have changed for us. After years of driving an hour each way, every Monday, for 30 minutes of PT with a horse, I am home, resting and it’s weird. I’m fine withholding good things from Chloe because I know she can get therapy in her 20’s and she will be fine. With Claire it is more complicated. After the crappy genetic lottery that she hit, I want to do everything possible for her. That’s why we have done pt 3 times a week for the last 8 years, flown to Boston repeatedly and advocated on many fronts for various things to improve her quality of life.
The decision to discontinue horses for Claire has been a heartbreaking one. It’s all me. I have the time, the insurance, the gas money but not the energy. I never wanted to be the limiting factor in Claire’s care but I am and that is such a hard thing to sit with. On top of that, the fabulous respit facility that we use had an opening on Mondays. It is such a huge blessing but it still feels like a mixed bag.
So right now, instead of shuttling my kids around I’m home alone, resting so hard it hurts. It hurts for so many reasons. It is lonely to not doing “mom stuff” on a Monday afternoon. I feel the weight of letting go and not controlling the future of her scoliosis, even though control was only an illusion at best. I feel the fatigue of years of hard settle into my bones. It’s no big secret, I love getting to help others. Who doesn’t love being the person with their shit together pouring into other people’s lives. But that isn’t how I’m getting to learn right now. Today I wrestle with the fact that each day is exactly enough, even if I didn’t try my hardest and it feels like a complete mess. I’m saying this here in an attempt to commit it to memory and believe it.
The best stuff isn’t in the doing, it’s in the being and I am enough. -me
5 thoughts on “Mondays”
Love to you. Claire might enjoy the break too. And who’s to say you won’t start up again in the future when you might have more energy!? I probably would advocate more for you to continue if we still lived on the route. 🙂
We’ve started to do this too. It’s a relief. A bittersweet complicated emotional relief. We love you.
-Rebecca and Eva Wood
You said it, bittersweet, complicated emotional relief, that is exactly it! We love you!
[…] Her daughter Claire has Rhett’s Syndrome and if you’ve ever struggled with mom guilt, her post on Monday will bring you some comradarie and perspective. Her writing is always raw, deep and profound and […]