Small Victories, Big Love: Navigating Rett Syndrome Together
This is a window into our journey navigating the challenges, celebrating the small victories, and embracing the love that carries us through life with Rett Syndrome. By sharing our story, I hope to offer connection, encouragement, and a reminder that even in the hardest moments, we are never alone.
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A Bag of Dirt Lightened the Load
It’s the Little Things That Matter. Recently I had an extremely busy day. Does anyone have what we call Birthday Month in your house? For us it’s the…
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Name it to Tame it: How AAC calmed her world
Using a Tobii was not something I originally wanted for Scarlett… Within one month of using her device she said “I Love You”.
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Paradox: What is it like?
I used to be one dimensional… “It’s a shame to feel that way, because people have assigned us these singular emotions, although that is not how life works…why…
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Into the Unknown
Blog #1 – Into the Unknown “Grief makes me want to make you understand” – Rob Delaney It’s the first step into the unknown for me and I’m…
About Me.
Welcome to my little side of the internet.
I’m Melody and I’m here for it all. The highs and lows of life including caregiving, disability, and life in general. I am a wife, mom to four amazing humans and caregiver to our youngest daughter who lives with Rett Syndrome, epilepsy and a super power; she talks with her eyes using a Tobii Dynavox Speech Generating Device. I love a good laugh, music, coffee with biscotti, and conversations that feel like a hug. I can keep children and sourdough starter alive, love to play tennis and in my spare time speak 5 languages. (Kidding! Spare time? What’s that?) Sometimes life is like the crescendo of an orchestra …other times it’s like a chorus of cacophony.
My goal is to inspire you (and myself?) on this journey called Life and help us face the inevitable life brings: grief, joy, hope, despair, uncertainty, monotony and so much more. Here you can find encouragement, hope, information, commiseration at the inequities of life, and tips for caregiving a medically fragile child and AAC user. (Augmentative and Alternative Communication).
Recommendations
Everything Happens for a Reason: and other lies I’ve Loved
by Kate Bowler
Out of My Mind
by Sharon M. Draper
Disability Visibility: First-Person Stories from the Twenty-First Century
by Alice Wong
What is Rett Syndrome?
To put it simply “Imagine the symptoms of autism, cerebral palsy, Parkinson’s disease, epilepsy, and anxiety disorder… all in one little child. Rett Syndrome is a serious, lifelong neurological disorder that is caused by random mutations in a gene called MECP2