What I Do Know

Have you ever tried to start a thought only to not be able to finish it? Just me? I’ve tried to make a habit of leaning into my emotions for a long time and I’ve enjoyed being able to articulate them in a way to connect with others. Right now I just can’t get to them and that is uncomfortable for me. In recent years, feeling has sort of been my superpower, how I’d cope with the crazy life we had. The last few weeks, there’s one thought I am able to grasp, and it’s a doozy, so hang on. Rett parents, this might be hard to read, you’ve been warned.

Here goes.

Living with a child with Rett Syndrome is just as hard as living without your child with Rett Syndrome. At least that is where I am at right now. The thing is, when you are living in Rettland, caring day in and out for a beautiful, vulnerable, demanding creature, you just can’t understand how hard what you are doing is. I did it for years. I knew it was hard, I leaned into that, but my soul could never wrap around that truth. People would tell me I’m a great mom and I’d laugh it off, like all moms are great, duh. Maybe it was my body protecting me, I’m no expert in neurology or biology, so I am not sure what factors were in play. What I do know is that just now, I can feel the sadness of the first IEP, the first seizure, the first 911 call in a way I could never get to before. Perhaps it is similar to how I can’t get to my feelings about Claire not being here, maybe I am just not ready for that yet.

During this incredibly difficult time, where I am shaky and my brain is mushy because I can suddenly feel the weight of the rett diagnosis, it’s been wild to see our rett family carry me. I figured knowing that the pain breaking me was something of an eventuality for them, that they’d love me from afar and that would be alright. Nope. They’ve been the ones calling to make sure I was safe to be alone, taking our equipment to find it a good home. Sitting with me having a few glasses of wine and sending funny text messages just to check in. That is just was caregivers do, they care.

I feel guilty, with my free hands and all the time in the world to let them support me, it’s weird and new. I’ve never had so many people pick up the check and shower me with generosity. I want to return the favor for everyone and I know the time will come, my strength will return and I will have the chance.

In the meantime, could you do me a favor? If you know somebody caring for a child with a disability, could you do something small and meaningful for them? Maybe drop off a bottle of wine or just check in and ask if they need anything from the store. They don’t know how tired they are, their body’s aren’t capable of feeling the full weight of the exhaustion, but it’s there. If you want to do this in honor of Claire, I’m watching #clairesgreatadventure and would be honored to see what lovely things are done in her honor.

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