It’s Tuesday, and we are at Great Ormond Street Hospital. We come here every week, and Ollie has individual therapy for his anorexia and PTSD, and we attend family therapy as well as parents’ and children’s groups. It’s an amazing hospital with expert staff. Ollie’s care is the best in the country. And I hate it.
I hate waking up on a Tuesday, knowing it’s Hospital Day. I hate keeping Ollie distracted as his anxiety builds. I hate the logistical nightmare of trying to wear the dog out with maximal exercise in the short morning before we have to leave him; I hate driving to the station, getting on the train, walking to the hospital. All of it. It all means one thing, and one thing only: anorexia, front and centre.
The past few weeks have been steady. Ollie has managed to attend school, and has done well in lessons. Ollie has represented his school at rugby, moving up from the C-team subs bench to the B-team starting lineup. Our days have been relatively calm. There has been only one flashback; anger and anxiety have been actively managed. We have parented mindfully and very actively, and have been able to steer Ollie through the weeks without undue drama. Today’s appointments should be smooth. Yet I am in knots.
Ollie gets weighed every week at GOSH. The aim is to maintain his weight at the correct height to weight ratio, and to support sustained growth. In reality this means that his weight should creep up by about 100-200g per week. For the past seven weeks, his weight has been absolutely textbook, almost unbelievably exactly as it should be. Last week I was congratulated for my skill in planning Ollie’s meals and snacks to such an accurate level. It was like getting an A* in anorexia management. We were given a print out of his weight chart: an almost perfect line. Now, as I wait for Ollie’s weigh-in, I’m worried that it might not be exactly as good as the previous weeks.
I have a degree in biology and a good understanding of energy in food. I have spent years working in labs, where precision was the order of the day. I carried out very sensitive experiments, where aseptic technique and total accuracy were required; I grew bacterial cultures, extracted and amplified DNA, and wrote scientific papers. All of that seems so incredibly easy in comparison to the meal planning I now live by. In the lab, a mistake meant maybe losing a few days’ work. Now, if Ollie loses weight, we’ll all lurch backwards as we’ll be scared that the anorexia is winning. If he gains too much, he will panic. Ollie needs to trust that I know what I’m doing, and the weekly weigh-in is his only proof of that. It feels like an exam, and every week I hope I’ve worked hard enough to offset his activity levels with the right kind of cereal bars.
So Hospital Day is a trial by weight. It’s also the day when we immerse ourselves in the world of severe early-onset anorexia: we talk to other parents, we sit in the department of adolescent mental health and we are surrounded by the misery. Downstairs, in the main hospital, we navigate our way through different departments, dodging tiny wheelchairs and buggies, tired parents and young patients. It is heartbreaking to see such young cancer patients, and children with obviously serious illnesses. It hurts to belong in this environment, but we do. Our child looks well, but he is profoundly ill. There’s no pretending here. It’s real.
Last week I spent several days filling in the 47-page Disability Living Allowance claim form for our son. I had to list everything that has happened this year, every professional Ollie has seen, every medicine he takes, and most importantly, every single aspect of his day with anorexia. It was not an easy task. I have no idea whether we will be awarded any kind of financial support (at best it will be a modest weekly sum). We now have an eight week wait to hear whether our son is “ill enough” by some tick-box criteria. Hopefully we’ll hear before Christmas.
It’s 1:45pm, time to go. Ollie’s first session of the day is coming to an end. I have to go and see what this week’s numbers are.