medically complex child | blueberriesandgiggles

A dear friend recently forwarded the first picture of Lily. This must have been her very first hospital stay when she was 2… It was such a scary time. Lily had recently started losing her speech and motor function (what did that feel like for her?). On top of that, her dad was suing me for custody, I had a demanding job, and the kitchen floor in our apartment literally caved in. My stomach still hurts just thinking about that time in our lives.

Photo 2 was taken yesterday—my 15-year-old on her way to a Coachella-like music festival at school. Lily no longer speaks with words, but wow, she is an amazing communicator, whether using her TobiiDynavox or her body language. Her motor function is still significantly compromised, but she is fierce, funny, loving, and so very cool. Her dad is now MIA, while I am (for all intents and purposes) a stay-at-home mom living in the coziest house with an amazing husband and stepdad.

Life is not easy. Almost every day includes a medical scare, and over a decade of worry has taken its toll on my body and mind. But damn, life is just beautiful. I have an incredible, tenacious teenager, a loving husband and a community of friends—many of whom are on a similar journey—who have supported us on this path. Maybe I should stop worrying so much about the future and remember that life has a way of working out.

Even though our mornings start with me saying “Lily – breathe” “Scoot forward angel face” “Stand up – you can do it!” “Keep your feet under you baby girl” “Walk forward” “Lily relax your muscles” “Lily open your mouth sweetie” “Swallow your food honey” “Lily you need to eat something before going to school”, they are also filled with so much love and many giggles.

Her struggles continue. Some of her symptoms are getting worse. Some are easing up. But she still manages to put a smile on her face and bravely move forward with her day. I do my best to follow suit.

I’m grateful that this girl continues to persevere in the face of so much adversity. A lesser person would crumble. I’ve crumbled. But I dust myself off and remember that Lily needs me. I do not have the luxury of losing my shit completely. Though I do lose it momentarily, and preferably when she’s not around.

I am her voice (though she’s getting quite fluent with the Tobii), I am her arms, sometimes her legs, oftentimes her nurse, her doctor and always her advocate. Oh yes, and I’m her mommy. So we do our best to have as much fun as possible in between (and sometimes during) all those doctors and hospital appointments.

It’s the season of giving. And my ask to you is this: if you are considering making a charitable donation in the coming weeks, please consider giving to the Rett Syndrome Research Trust. We are SO very close to a cure; every dollar raised inches us to our goal. And all of our Rett sweeties and their families could use a miracle right about now.

With Gratitude,

C & L