May the road rise with you
Cards Against Humanity is now de trop chez nous, especially as Nick had the audacity to win the first game. Uno is where it’s at, and let me tell you, it’s SAVAGE. I’d hate to suggest that we’re a competitive family, but I was lucky to make it to bed with all my limbs intact last night. Apparently, saving your block and +4 cards for your last hurrah is Not The Done Thing.
Moving on from that (nobody has yet, actually), we’re all full of the joys here, because it’s Joe’s birthday. He’s full of the joys because he’s 22 and why wouldn’t you be?
I’m full of them because he’s here at all. My blue eyed boy was born to Van Morrison’s “brown eyed girl”. Not my choice – I was whacked off my tits on all the drugs and trying not to vomit on the anaesthetist’s feet.
His journey to get to the operating theatre had already been interesting, but here we were at 35 weeks and it was party time, baby. Or not, as it happened. He was born blue. I had him for a moment – long enough to say “he looks just like my brother” (it was the DRUGS, man) and then he was gone for a while. We had another few moments while I was in recovery and then he was taken away to the special care unit because he wasn’t taking up oxygen.
Twenty two years on, it’s all still a bit of a blur. I was pretty out of it and we had no idea what was wrong. They brought him up to the ward in his incubator before they took him to another hospital with more special care facilities, but before I fully woke up he’d been blue lighted to the Neonatal ICU at Great Ormond Street and been intubated.
He had pulmonary hypertension – something that affects around 2 in every 1,000 babies at birth. We were lucky he was born in London – only GOSH and Alder Hey have the facilities to treat it in the UK. The survival rate isn’t good and the chances of brain damage are raised. So we stepped out onto a parenting road we hadn’t expected, while we waited for him to show us who he was.
I first saw him when he was 5 days old. They discharged me a day early after they’d told me I could go home if I could walk down the corridor and have a shower. So that got done. He recognised my voice and they had to increase his sedation because he was trying to pull his ventilator out. I held him when he was 10 days old. By then, we knew he was going to live. We didn’t know with what capacity – we had to wait and see. With grit, resilience, sheer bloody mindedness and Viagra, he’d hung on in there, like a boss.
Now I know him, I’m not surprised. He has, for all his life so far, very gently but firmly danced to his own tune. He’s done things when he’s good and ready. Like achieving his milestones. The day before we reached the deadline for him needing a brain scan, he casually smiled, like it was all just too much like hard work. Who cares if he was 13 weeks old and we were all holding our breath? He didn’t bother to crawl, he just got up and walked at 13 months. He’s still like my brother. He’s never changed and I hope he never will.
It’s impossible to describe, even now, what it’s like when your baby nearly dies. How it felt to go home from hospital without him. The relentless fear that he would die in a hospital miles away from me and that I wouldn’t be there. How wide the ripples of a trauma like this extend through a family. The random things that, even years later, make you catch your breath.
It would be wrong to say I never think about it, but it’s rare these days. That premature baby is an adult, making his own way in the world. Stories get told when they’re ready, and it’s good to tell them if it allows them to assume their proper perspective. This was Joe’s start, but it’s not part of the daily narrative of his life and nor should it be. It’s just a tiny, albeit important, part of his story.
So, my darling boy. Go out and continue to be the magnificent human you are. I’ve always got your back, but somehow I don’t think you’ll need it.
