When I got back from our family holiday I was dreading the backlog of ‘To the Parents of Mr Boo’ letters that would be on the doormat. Any parent of a medically fragile or disabled child will know what I mean. The endless appointments that take so much juggling to attend, the dashed hopes when it’s not the appointment you’ve been waiting for for months and really need. The summaries of appointments that coldly reduce your child to a set of terms, conditions and prognoses. There were plenty of those, but the letter that really floored me was slightly different.
I knew what it was before I opened it. You see they’d addressed it to Boo but given him my surname (The Grumposaur and I are not married). It’s the name he went by in hospital even though we begged them (for the sake of my struggling-to-bond partner) to give him his father’s name, the one he was legally registered in long before he came home from the hospital.
Yes: this letter was from his NICU. And this meant one thing: an invitation to its annual reunion. It’s not in the NICU – it’s at a local school – and it’s a chance to reconnect with people and do some modest fundraising via tombolas and raffles.
When last year’s invitation came we had only been out of the NICU for a couple of months. Too soon, I thought. Next year, I thought. Well now it is next year and it’s still too soon. I can’t go back. Not even to a school where NICU staff and its wee graduates will be. I can’t do it.
Why? Please don’t think it’s that I’m not grateful to the staff there. I am. But in the four weeks we were there I didn’t strike up the same kind of relationships I did in the first NICU he was in. And as for reconnecting with other parents and children? Well, that assumes we connected in the first place. Sadly, we didn’t.
I read lots of premature baby blogs and am so touched and made a little envious (if I’m honest) when reading about NICU friendships. I didn’t make any. You see our local NICU, to which Boo was transferred at 32 weeks was not a high-level NICU. When he was moved, he went into intensive care (a blacked-out and totally depressing room). There were two other babies in it. They both were out in a day or two. Most seriously ill or very premature babies born there were transferred up to London or to other hospitals like the one Boo was born in because I work so far from home. As a result, Boo was always one of the most acute cases there.
Most babies who came in were in for a few days only. Their parents were no less worried, they were often extremely and visibly upset, but when they poured out stories while waiting to be discharged, about how they’d just had the worst 48 hours of their life and then found out Boo had been there for 5 weeks already, they ceased to be able to talk to me. It wasn’t a competition. But I got the feeling most parents thought we trumped them in the misery stakes. I wanted to hear their stories because I wanted people to talk to, because I wanted people to listen to me. But the minute people knew about Boo’s prematurity, the brain bleeds, the meningitis, or saw people running to administer facial oxygen after a reflux-related desat they stopped talking to me.
That NICU was one of the loneliest places I’ve ever experienced. I was there for hours every day but I never got used to it. All I wanted was for him to get out. And now we are, and grateful as I am for all they did for us, I can’t go back. I can’t be one of the parents of the children who didn’t get away with it. All the 27-weekers and just fine now little folks people tell me about in conversation all the time to give me hope about Boo.
I am proud of Boo and all he has achieved and genuinely happy for all those babies that got away with it. But I don’t want to be reunited with the pain and the loneliness. I can’t go back. I wish I was strong enough that I could, but I can’t.
We’ve all come such a long way in the last 18 months. Just not far enough it seems. Maybe next year. Maybe…