She was still brand new. It was just days, maybe a few weeks, from our life-changing dual birth diagnoses of DS and congenital heart disease, and I had not yet recovered. Definitely not from the birth, physically, though I was barely conscious of that; but it was the birth trauma and demanding medical needs of my newborn that had me reeling. What would this mean for us and the rest of our lives? I had no idea. Everything at the moment was medical tubes, monitoring devices, doctors’ appointments, and fear.
I cried a lot. I couldn’t answer texts. I crawled the internet looking for answers and hope like I was dying of thirst in the desert. And I kind of was—that’s how thin my knowledge was at the beginning of this.
I remember so clearly the first flame of hope. I had read a lot by then—devoured blogs and books and pamphlets in record time. But what broke through—what really broke through—was so simple. It was a video clip of a sister with a guitar, sitting on the floor in a hall, singing casually but so sweetly, “You Are My Sunshine,” with her baby brother who had Down Syndrome. Her voice was beautiful and clear. Her behavior was natural, as if they did this every day. “You are my sunshine, my only sunshine, you make me…” She paused in her singing and waited for him to sing back, which he did: “Hap-py!” I bawled. And then I knew: There was hope.
Today, on winter solstice, that memory was buried in the past when I walked into Lydia’s room. She greeted me with her customary, “Hiiiiiii!” which always makes me grin. As I helped her change into her clothes for the day, I asked if she wanted to sing sun songs? As I started to sing You Are My Sunshine, I thought about her radiant light, and it all came back. Eventually I stopped singing, but Lydia continued, all the best parts ringing out clearly: “happy,” “love you,” “sunshine.”
My heart almost burst. It was the darkest of dark nights, but oh what a radiant sunshine was born. Let her shine, let her shine, let her shine.
