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.
A few weeks ago, Lily lost a tooth and got $5 from the tooth fairy. She told me and Elaine (her speech therapist) exactly what she wanted to do with this money: buy an orange watch! You see, she’s learning to tell time, something that she told us that she wanted to do, of her own volition. A watch is the perfect accompaniment to this activity, no? She’s so proud of this orange watch.
blueberriesandgiggles 