I was drifting through my photo archives the other day and came across this picture of Lyra. She was tiny, maybe four or five months, and we were in the thickets and brambles of her disease. We were between doctors’ appointments, and had time to head up to the North of England to see friends in Harrogate.
That time feels vague and remote, shrouded with uncertainty, pain, grief. So different from now. But I can time travel back with the flash of an image, a deep breath, closed eyes.
Here, I can’t believe I ever worried. There, I didn’t know anything but.
I was recovering the the shock of discovering this disease, the trauma of doctors with grim faces, a parade of them delivering despairing prognoses. Doctors in clinics and hospitals various and sundry acting as though darkness and sadness were foregone conclusions. We wondered would she still see? Would she develop? What of this heart problem? And then, when we came upon doctors who were buoyant, bright, experts in this, doctors who could see me, a mother scared out of her mind, a baby whole and perfect as she is, well I couldn’t believe them.
And now, this little light, my tiny bird with eyes like a cat, shows me day after day, the glow of her of her perfect wholeness. And now I have this little wonder, who scoots around on her bottom, and crawls with one leg up and one leg dow. My little Birdie who loves cars and stacks them small ones inside big ones and drives the whole lot around brrrrrrruuuuum, brrrrrrruuuuum, who rocks her dolly back and forth, who scoots on top of her brother’s train tracks and topples them as she passes, who eats spaghetti with great love and demands chocolate from whomever she can, who cuddles the dog, blows kisses to me, swats me on the head and says “ow!” My little love who loves her brother maybe most of all. She says “hi” to everyone on the train. She says, bye, outside, hat, and Ed (for the dog) and hot? when we serve her food, down, ice, eyes, feet, and so many more words than I can think of now. How could I ever have worried about her development? I wish I could just trusted. I wish I could have told myself you will handle it, and you will keep handling it, hard as it may be, you’ll keep putting one foot in front of the other, and you’ll keep striving to be a human.
But of course, back then we didn’t know. And now, we still don’t know. Nothing is promised us. Nothing is promised anyone in this life. Her condition is chronic. Things may be stable for now, and they may continue so for 30 years, or longer. And they also might now. I don’t know. But I know more that I’ll handle it. She’ll handle it.
In each of my pregnancies, I’ve had a dream at about seven or eight weeks gestation. I’ve dreamt my babies. Each time I’ve seen the baby, known their sex, their hair color, even a hit of their personality. Each time it’s been just one dream, though I’d got to sleep every night wishing for just one more glimpse of the baby. And I had just this dream with Lyra. But I also had two others. At about six weeks, a dream of a kitten trying to keep it’s head above swirling water. At 20 weeks. A baby having tests and checks, having an operation or an MRI. We were all so worried, huddled and frightened. And then she came out, and white coats said, she’s fine. And she was.
That’s what I try to hold in my mind.