19th July 2018
Tonight I just can’t sleep. I’m tired, I’m exhausted as I’m a bit under the weather. But I can’t sleep.
Tonight I keep thinking about Hospital Time. “He’s doing prison time now”. We did Hospital Time. Because surely it was a punishment for something? Surely. And not just for us, but for those we met who were lovely, dedicated, outstanding parents but went through the same trauma we did, or still are going through it. Or worse still, came home empty-armed. It’s too cruel a thing, it must be a punishment.
I stroked my daughter’s hair today and I thought about the night she nearly died. And the operation they told us she wouldn’t get through. And the day, months after Hospital Time, when I wept at her bedside because the operation she’d just had, the last hurdle we needed to jump to go home and be a normal family, might have failed. I sobbed at the thought of handing her over to an anaesthetist again, too tiny to understand me when I told her I’d still be there when she woke up.
Today I held my son’s hands as he danced and thought about the day we followed the ambulance to a new hospital, leaving his twin all alone because he needed emergency surgery. I thought about my first Mothers’ Day when I wasn’t allowed to visit him because I was sick, and the phone rang at 2am because he was struggling to stay alive. I thought about my husband having to visit alone, at 2am and ask the consultant if he would die tonight. I thought about the day they told us he might have cystic fibrosis, the day they told us he’d lose all the toes on his right foot, the day they asked us to choose between risking cerebral palsy and maybe never managing to get off that damned ventilator.
And I thought about today. When my babies giggled uncontrollably at Daddy’s funny face marathon. When my daughter forcibly shoved toast in her mouth and declared, somewhat aggressively, “NUM!!”. When my boy held my hands and danced, grinning like a loon. I am very, very, very lucky. But there was a price.