Waiting. It’s become a favourite preoccupation of mine since having Boo.
We spend so much of our lives waiting. It started in the NICU. When Boo was born we had to wait and see if he could breathe independently. He did, but then he got meningitis. Then we had to wait to see if he’d survive. He did. But then there were the brain bleeds and the damage. No one could predict how they would affect him. We’d just have to wait and time would tell, the consultants told us.
And we are still playing that waiting game. Waiting to see if he’ll roll, sit, walk, talk, have learning difficulties, be able to go to mainstream school. And part of that game involves going to lots of appointments and sitting in waiting rooms. Sometimes for hours. How can a clinic be running 2 hours late when your appointment is 15 minutes after it starts? It also involves being on massive waiting lists, hoping we can access the folks we really need to see (OT, wheelchair services) before other problems set in because we’ve had to wait too long for the equipment that would help him.
And there’s also the big wait hanging over us. The wait for the postman every day, hoping he’s going to bring the letter telling us the results of the diagnostic tests Boo had over 2 months ago. The results we hope will confirm he has CP, as we expect, rather than some horrid genetic or chromosomal disorder or something life-threatening. Please, please let them come soon. Please let it be what we expect.
I’m not great at waiting. It’s not that I’m impatient, exactly. Well I mean I am and I’m not. I get very frustrated with myself when I don’t get things done or can’t get my head around something. But I’m also determined/bloody-minded enough to keep going until I’ve got a grasp of things. When I was young, I had to take a year out of school for health reasons. My appointed home tutor couldn’t speak German, the language I needed to start that year. So when I went back to school, still unwell, I had to learn 2 years of German in one, with no support from the school (or my parents, who don’t have any other languages) to pass my GCSE. I did and it was so hard I decided to continue on to A-level. Why waste all that work, I thought.
My approach to my GCSE colours my approach to our life now and the waiting game we have to play. Like I’ve said before, I’m not going to take each day as it comes; we’ll wrestle as much as we can with our situation to make out of it the best for Boo. We don’t just wait for milestones to be met ( or not). We do physio every day. I’ve sought advice on seating and carseats and sorted that myself because in my mind and his physio’s Boo can’t wait any longer for OT intervention.
I push against the tide at every opportunity. It’s hard work, to put it mildly. And sometimes I feel like I can’t push back any more. I start to crack. I sob. Then I give myself a pep talk and start all over again.
But for all my kicking back, for all the frustration and exhaustion, I do recognise a certain beauty of life in slow motion. Not the waiting for appointments or battle for intervention (I love the NHS but the waste and inequities in the system – a post for another day – make me weep, regularly). No: I mean the watching and waiting for Boo.
The other day I was talking to one of my students about Boo and she (a mother of four, grandmother of two and a PhD completing marvel) said ‘I don’t know how you cope. You are amazing.’ (I am not, by the way. I am not.) I acknowledged things were hard, but almost surprised myself by telling her how beautiful they were too. ‘But you must be so worried waiting to see what will happen,’ she said. Well, of course, I am. But it is also fascinating and amazing watching Boo grow.
‘It’s like those nature documentaries,’ I said to her. ‘You know, the ones where a flower is filmed growing from a barely perceptible seedling into a tall, fragile and proud orchid in about 30 seconds against the backdrop of a rapidly changing sky. Sissyboo, though I didn’t realise it at the time, was like the sped-up orchid, moving quickly and without hitch from skill to skill. Boo? Well he’s more like the orchid in real time. And while I want to speed the film up sometimes and see the orchid in full bloom, to know its particular shape and shading, his progress is no less beautiful. If anything it is more stunning to observe the slow unfolding of his becoming the boy and young man he will be.’
I’ll never be good at waiting, Boo. But I am patient enough to be tenacious, to help you all I can. But don’t think as I try to help push you on (‘Come on, where’s that trunk control, straighten up… Just 5 minutes more physio, Boo) that I don’t appreciate your progress.
I can’t wait to find out who’ll you’ll be. But I adore you just as you are, too.