This time last year, Nora’s illness was only beginning. We had no idea how bad things would become. We never could have imagined that our eleven-year-old daughter would reach a point where she was so ill she wanted to die.
For some time, I’ve wanted to write about how Nora’s illness progressed, but I’ve never been able to get the words down. It’s always been too painful.
But…I want other parents – who are going through something similar – to know that they’re not alone.
So, I’ve finally written something. I hope it helps.
Nora’s anxiety has become unmanageable. The only way I can get her into school if we go for long walks beforehand. This means getting up early and walking for up to two hours before school.
I know that Nora’s already in a dark place, and she needs help. Through our GP, we’ve got a referral for a private consultation with a psychiatrist. Apparently, Nora isn’t ill enough for a CAMHS referral.
The psychiatrist thinks Nora may be suffering from depression, although this condition is – apparently – extremely rare with children as young as Nora (she is eleven).
Because of Nora’s age, the psychiatrist rules out anti-depressants, and recommends a ten-week course of CBT counselling. My husband and I are relieved. It seems inconceivable to medicate our eleven-year-old daughter with anti-depressants.
The CBT sessions aren’t helping. Nora continues to deteriorate and I suspect the counsellor doesn’t really know how best to treat her.
Nora’s school have suggested that trying – and failing – to keep Nora in school is counter-productive. The counsellor disagrees and thinks we should keep sending her in.
We take the school’s advice, because it feels like the right thing to do. Nora stops going to school.
By now, Nora is self-harming and suicidal. More than once, we’ve ended up in hospital, where we spend nights on ‘suicide watch’. Nora undergoes several psychiatric evaluations. These confirm what we now know: Nora is suffering a severe depressive episode.
Nora’s psychiatrist prescribes anti-depressants. We are relieved. It’s clear Nora needs more than weekly counselling sessions to get her better.
Nora has stopped speaking. Completely. The only time I hear her voice is during her terrible meltdowns, when the weight of what she is enduring simply becomes too much. These happen several times a day.
Following one particularly bad episode, we end up back in hospital. We are given a private room, because Nora’s meltdowns are so upsetting to the other children on the ward.
For the third time, Nora is assessed by CAMHS, who tell us they can’t treat Nora while she’s being seen privately.
We have to make a choice. The psychiatrist’s secretary calls me and tells me Nora will get much better treatment under CAMHS. I take her advice and we end the private treatment.
We are now under the care of CAMHS. We now have a team of people looking after us. There are people I can phone at any time of the day and night. Mental health professionals visit us at home several times a week. We have a new psychiatrist and a brilliant counsellor.
Time and again, these professionals tell me they have never encountered a child with symptoms as severe as Nora’s. This is frightening, but also oddly reassuring because I know she is – indeed – very, very ill.
This month is Nora’s birthday. Her friends come to visit with presents. She can’t speak to them, but they all give her hugs and I’m glad they’ve come. They cry, because they haven’t seen her since she fell ill.
She is pale, gaunt and silent. She has lost so much weight, her friends look like giants beside her.
Nora’s CAMHS team tell me they are ‘flummoxed’ and simply don’t know how to treat her. If they cannot come up with a plan soon, the next step will be to admit her to a psychiatric unit. This is a specialised unit for teenagers with severe mental health problems. Typically, children in this unit are aged from fourteen to eighteen. Nora is twelve.
We are told Nora will have to be fed through a tube if we cannot get her to eat.
We have a care plan! It’s pretty basic but it feels like a huge step forward. It involves Nora doing things like getting out of bed by herself, eating regularly, getting dressed and getting fresh air each day.
Nora doesn’t think she will be able to do any of these things. She locks herself in the bathroom and tries to cut her wrists. Luckily, with the help of a neighbour, I’m able to knock the door down before she cuts herself too badly.
Although this is awful, it’s also a turning point. Gradually, we see tiny signs of improvement. And then something wonderful happens. Nora starts speaking again. Whispers at first, just a few words every now and then.
But every single word is precious. Over the course of her illness, I’d forgotten what her voice sounded like; I would watch videos I’d recorded before she fell ill, simply so I could hear her speaking.
Today (one year since the beginning of Nora’s illness)
Nora is speaking, eating, exercising and engaging with life. She sees her friends. She goes to the gym and goes for long runs most days. She writes poetry, and takes acting classes. She is rehearsing for the lead role in a play.
We don’t know what the future will hold but, then again, none of us know that.