Lately I can’t sleep. I can fall asleep but I can’t stay asleep. Around 4 a.m. my eyelids peel open like shades snapping against the tops of windows. Hello world, it’s me and I’m wide awake. But it is January in Portland, and the darkness is inky blank, my own fingers invisible in front of my eyes.
This time of year is tough. Not only because January always seems a cloudy hangover from the holiday celebrations of December, but also because January marks the start of a new year, a time to reflect on the past year and take inventory, another tally mark -- my life getting shorter and my children growing older.
Sean’s birthday is also in January -- a bittersweet reminder that time marches on even if my child’s development continues to lag behind. Of course a child’s birthday is a happy occasion for any parent, that is any parent with a typically developing, healthy child. Another birthday for Sean can sometimes be a lonely reminder that progress is slow, painful and often times below eager expectations. It’s as if I’m losing valuable time -- as if my boy is falling further behind me -- no longer within my grasp.
I have to constantly remind myself to live in the present. The future, like the past, is equally if not more so, painful to ponder. To go there is to go to a dark swimming hole, the water freezing and murky, my skin prickling from just a touch, but knowing I have to build the strength to plunge in, to tread, to keep my head up above the choppy water, because if I can’t, who will?
Sean’s birthday came and went, complete with frosted cupcakes and balloons and presents. He is nine years old. Wow. Last night he came into our bed around 3 a..m. -- his musclely, taut arms and legs wrapped tightly in thermal long johns like sausages. He flung a leg over me and an arm over his father’s shoulder. I reached for his face, cheeks, and touched them sweetly and then I buried my lips into his messy ginger red hair, breathing him in and my tears dampened his bangs.
It is the time of night that I am wide awake with my thoughts, my worries. There he was, sleeping, his breath almost a snore and I let myself remember when he was a perfect, sleeping baby. Where did the time go?
I wish I had the energy or maybe it is the hope to dream on the cusp of a new decade. The last decade was full of movement, of highs and lows -- of babies growing stronger, taller to little boys -- of a diagnosis that not only changed my son but changed us all. We are much more tentative. We balance hope and reality delicately -- holding on to a better tomorrow and yet trying to keep our hearts whole.
Happy Birthday, Sean. I’ve made my wish and now it’s time for you to make a wish.
Sam Smiles Project
1 month ago