Seven Lessons I’ve Learned From Rett Syndrome

I know what you’re thinking… you’ve not heard from me in ages and then within 24 hours, I post three things.

Well they say that all (good or bad? I can’t remember the saying) things come in three so this will likely be my last one for a while. And it’s really just a repost of what another wise momma wrote. It resonated with me so much that I wanted to share it here.

Thank you momma-warrior Joanne for sharing your insights,  specifically the ones on bizarre symptoms and respite.  She has nailed it with her commentary on what Rett Syndrome has taught her.  Like I said in my earlier post, it’s a hell of a disorder.

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At school earlier today playing with bubbles!

 

Struggling

I am not going to sugarcoat what’s been going on. Lily is having an extremely difficult time doing things she used to do effortlessly like sitting up on her elbows, standing, walking, breathing.

I’ve been busy trying to procure additional help at home – whether it’s friends or family stopping by in the evenings or hiring a morning aide to come and help us get out the door. We just got approved through Medicaid for a home health aid to be with us 24/7 but there are still numerous steps to actually get that support into place. It still may be a matter of months until this service kicks in.

We are navigating through a new, terrifying TEMPORARY time. Through it all, this kid amazes me with her determination, grace and beauty. She is my hero.

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A bit of respite

So… Lily is with her dad for 10 days. He’s taken her to Connecticut (where his folks live). I already miss her like crazy (she was picked up yesterday) but I know I need a break. I need to regroup, sleep, remember who else I am (other than mommy and boss). Last night I went out and had a blast.  And today I’m heading out of town for 3 days to go on a yoga retreat (which I try to do every few months).

The rest of the time she’s away, I’m going to work (arrive on time, take a lunch break and go to the gym after work), sleep, and be social (when I’m not sleeping). I feel so lucky that I have some breathing space. But wow. I’m missing my sweetie!!!!!!

The sweetest!

The sweetest!