We have all known life is uncertain, but 2020 has really handed us uncertainty on a silver platter. If anything Covid has given the world a glimpse into our lives. The entire world is contemplating medical uncertainty, a range of debilitating symptoms, fear of the inability to protect our children and hope that a treatment or cure is on the horizon.
For families living with Rett Syndrome, we are used to uncertainty. We are used to researching until 3 AM trying to figure out if which probiotic will diminish some of the gut irregularity caused by Rett. We have read about broccoli extract, turmeric, ginger and every other spice or seasoning to add into meals in hopes to diminish inflammation or whatever ailment we need to attend to. We wake up everyday with a barrage of symptoms that become second nature to attend to. All without treatment. We’ve researched western medicine, eastern medicine, homeopathic remedies, whole food cooking, plant based diets, keto diets, gluten free, dairy free, and everything else ever written. We have read the effects of CBD, poured through laws regarding medical marijuana and in some cases tried it ourselves to see what the effects are. We have read science journals, science reports, and pharmaceutical releases. We have waited for clinical trials to advance, swallowed their failure, obsessed about orphan drug status and prayed for compassionate use of a new unapproved drug.
So, for a brief moment the world collectively gets a glimpse into the life of living with medical uncertainty. Its hard. It’s exhausting. I see you.
What I want you to see is this.
My child struggles everyday to walk. She willfully does.
My child struggles everyday to breathe. She tries to regulate while her erratic breathing takes over her body.
My child has lived through years of uncontrollable seizures. Right now they are controlled which means she only has a handful every week.
My child has lost almost all use of her hands. Everyday she tries, she works through difficult therapies and tries to retain the last of her hand function. Her left hand can sometimes grab a perfectly placed piece of food and put it in her mouth.
My child has the steadfast strength of a Navy seal continually fighting a body that is at war with itself.
My child works everyday to learn and access technology to help her communicate. Her body has to be calm and working well to not impede her ability. She is smarter than the world will ever understand.
When you see her, see her strength, her perseverance, her resolve to never give up.
Life is uncertain but your willingness to live doesn’t have to be. Rett Syndrome Awareness is everyday for us. For the month of October, do me a favor, google Rett Syndrome.