Surviving in Rettland

It’s been a hard lesson for me to learn but it’s becoming unavoidable. You just can’t adventure all the time. Boston was an adventure. It was risky, there was an element of vulnerability and it caught up to me. I tried to embrace my thrill seeking side and enjoy it but it caught up to me and now we are surviving. I’ve always viewed surviving in a negative light. As if just getting by isn’t enough. I’ve always lived like a positive outlook was enough to transform surviving to an adventure but that just isn’t true and that has been one of the hardest lessons so far for me in Rettland. photo

Once I got over the feeling of shame that came with the realization that we are just surviving I was free to just take a few deep breaths, over and over. In fact, that’s all I’m still doing. Right now there isn’t a lot of movement because we are hunkered down in survival mode. I’m not saying this to make a case for how hard it is to participate in a clinical trial. While that is what broke me, anything could have. Living in Rettland is just really hard. Sometimes it is an adventure and sometimes it’s a matter of survival.

I’ve been reminded that Claire needs just as much attention when she is well as when she is sick. Imagine that, never getting a break from the exhaustion that comes from caring for a sick child. That is what we are dealing with. Sometimes it is easier, like when I get to sleep at night. That’s why when we were rested, we decided to go ahead and enroll in the trial. Rett syndrome will continue to be this hard until medical interventions are available.

We aren’t there yet. Living in Rettland can kick your butt and if you are out there and just surviving, you aren’t alone. It won’t last forever. Some unexpected circumstances will make some days easier, I don’t know when but I do know it’s coming.

4 thoughts on “Surviving in Rettland

  1. We applied for Homebound schooling yesterday. I was going to put it up on her Facebook page. Then I started commenting here and I decided you knowing is enough for now. Because we have nursing now, my life is okay. But her life really sucks for now. It’s getting to be really hard watching/asking her to do try harder, do more, not be satisfied. I have to, or she’ll get super sick. But I really don’t want to!

    She is sososo brave. She has the endurance of alien gods or something. Her smile right now? A Rolo after a day without food. A cuddle from her? A cool breeze across my sweaty back when Atlas made me babysit.

    Journeying Beyond Survival is like trying to get back to the Shire when it just isn’t there anymore. Survival is nothing to be ashamed of. I think you and I truthfully should wear our scars proudly.

    1. JBS, I am so embarrassed that my response didn’t post! Why must I be so bad at technology, so very sorry for the delay. Thanks for sharing and being vulnerable here. I can only imagine having to navigate those circumstances. The girls, their spirits, they are the perfect refreshment to get us through this crazy. Thank you for pointing out that the shire just isn’t there. I keep forgetting that as well as the fact that our scars are something to be proud of. Sending much love and happy birds in your tree to enjoy with you sweet little miss. xx

      1. Don’t be embarrassed. I don’t mind at all, being a part of Rettland means that all my friends are living a busy life. My she’s a bit better, and I am SO happy for your blog post today. Choosing goodness doesn’t change the facts, but is sure does reframe reality. xo

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