Too Close to Home

I’ve had a hard time with words lately. It’s hard to access basic language to navigate daily living. Articulating complex emotions feels well outside of my reach. So today I want to talk about the power of other peoples words.

About two months after Claire left, two friends arranged a quick girls getaway to a spa an hour from home. I met both Erica and Summer because their daughters also have Rett Syndrome. They had both recently gone through the surgery to have a g-tube placed and had been walking me through that in the days that ended up being her last. It’s weird how close we are considering that we don’t live near each other and are all very different people. But we’ve got this common thing that was an incredibly strong bond. That is, we did.

I worried that I would be too heavy. Living with Rett Syndrome often means enforcing difficult boundaries and protecting yourself at all costs. This hit close to home for them, too close to home. In fact, they didn’t create distance to protect themselves, they moved in. Erica set up a gofundme which I would have been too proud to do on my own. She knew that we’d lost half our income and the stress that would create. This allowed for the most incredible virtual group hug that we desperately needed. Summer drove over an hour to be there, to do whatever I needed, which happened to be getting rid of medical supplies that hurt to look at and holding me when the call came from the hospital to ask why Claire hadn’t shown up for her appointment. They both answered my numerous calls when I just needed to talk so that I could breathe.

Naturally, after a few weeks of supporting me on top of their already complicated lives, we all needed some rest, so we met up for that. It was surreal, on top of the grief, this was also the first time I’d done something with friends in forever because of Cov!d. Everywhere we went, the fun staff would ask, “What brings you here?” Without missing a beat Erica would casually explain, “Our daughters all have the same neurological condition and her daughter just died, so we wanted to be together.” I honestly don’t remember what the reactions were. I would just sit back, inside my soul and bask in the glory of friends who weren’t afraid of me and my sad story. It was incredible to feel seen in those early days, protected by my friends, who were committed to framing it in a way that I could live with. They didn’t let it be a sad story, it was just a story.

I guess the point I’m trying to make is Rettland sure sucks, but the company is incredible. There are so many incredible people that have chosen to be with me the last few months, when I know my reality is difficult to be close to, forever grateful for you all.

Also, if you’ve got a friend who is grieving, they are probably drowning more than they show and normalizing awkward hard stuff is an incredible gift to give.

4 thoughts on “Too Close to Home

  1. Ariane says:

    When this was first posted I wasn’t able to read it and when I went back to find it, I couldn’t. I’m so glad it reappeared on my feed so I could take the time to read it. I’ve always enjoyed your blog Colleen! Your writings speak to my heart and my emotions. I often don’t know what to say when a fellow Rett momma loses their child but find myself wanting to say so much, it’s the right words that never seem just right.
    Anyway, I love being connected to you in this small way. Never leave! We would find you 💖

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