I’m in the supermarket with Ivy when my phone goes – Lily’s college. Already I’m striding towards the exit as I answer, my heart beating faster. Last week the call from college was because Lily was having a seizure, meaning dropping everything, abandoning plans to have dinner with my parents and instead driving 90 minutes to reach her in A&E. Has she had another seizure?
Instead her tutor asks me if Lily has been in contact. She hasn’t, and he explains that there’s been an incident, and Lily has stormed out of college following a heated argument with one of the tutors. Her guitar had been slipping out of tune and he’d told her to use one of the spare guitars. I wince – this was Lily’s first day with her brand new guitar, she’d been looking forward to it. I knew that her anxiety levels would have been going through the roof if there was something wrong with it, or if she feared that she wouldn’t be able to use it. She needed things to go right, to be given enough time to tune it and continue playing, for her to keep control of the situation. But now the immediate issue was that she had run off into the city on her own, leaving her belongings behind her.
Ivy and I both try calling and texting her, but there’s no response. We realise she probably doesn’t have her phone on her, it would have been in the bag that she left behind. I call the college back and let them know, trying to reassure myself that she can’t have gone far without any money. She’s likely just sitting it out somewhere nearby, waiting for the class to finish before she goes back in for her stuff. Her tutor kindly offers to go back outside to look for her again, and shortly afterwards I get a text from Lily to tell me she never left the building and is now sitting on the stairs talking to her tutor.
The immediate panic is over, but now it’s time for the longer term consequences.
It takes me over two hours to try and calm Lily that evening, she tells me she is traumatised and becomes angry and aggressive as I try to get the story out of her. In the course of the conversation it becomes clear that she was aggressive and swearing at her tutor, and that she threw a chair – not at him, but not a good idea in a college that’s packed full of expensive musical equipment. Lily sobs as she recalls how her band went on practising without her, “They don’t need me, I’m useless,” and that she has no friends and thinks everyone hates her. To prove this, she shows me an abusive message she’s received from another student, she doesn’t even know how he got her number. She doesn’t know if she can face going back, and I make it clear that she has no choice, she has to remain in education. That she has loved this course so far, and it’s stupid to throw it away over one session that’s gone wrong.
Approaching 10.30 I tell both kids that they should be asleep by now, they need to settle down. I usually do this around 10pm every night, but I can’t force them to actually go to sleep. Around half midnight I hear Lily’s door as she goes to the bathroom, and know that yet again she’s stayed up too late. Lack of sleep is one of the likeliest causes for epileptics to have a seizure, but nothing I say can get Lily to go to sleep early enough.
Next morning she doesn’t get up on time and I have to wake her and tell her she needs to go in. Typically, she flies downstairs at the very last minute, swallows her epilepsy tablets – I have also just discovered that she’s run out of her 500mg pills without telling me, another thing to sort out today – and grabs the decaf coffee, breakfast bar and apple that I’ve left out for her. She refuses the sandwich I’m trying to make for her – I’ve also discovered she’s been skipping lunch in order to save up money, but can’t be bothered to make herself a packed lunch instead. So basically, she’s been going into college each day without enough sleep, no breakfast and then skipping lunch. It’s disastrous for her epilepsy, and likely contributed to her seizure last week, but is also likely to be making her even more irritable and irrational. I get her to promise that she will have lunch, and remind her that she needs to apologise to her tutor, before getting her out of the door on time at 7.30.
By the time I’m driving Ivy to school an hour later, I’m fighting back tears as I try and chat to her while simultaneously mentally rehearsing my To Do list. Go to the GP surgery to sort out online access and get an emergency prescription. Call college. Call the Family Support Worker, even though I don’t have her number, how can I get her number? Does Lily need a further diagnosis, how can I get that, no one will listen? Write the cover letter to the CMS and send the evidence, hopefully the letter I requested from our previous support worker will arrive today. Call and cancel that subscription before I get charged for it. And so on, to infinity and beyond.
Driving home, I park and walk into town to sort out everything at the doctor’s. Of course, the GP doesn’t sign off prescriptions until late in the afternoon, so I will have to go back this evening and hope that the pharmacist can fulfil it without having to wait to order it. I’m walking back through town when my phone goes – it’s college. The man on the other end tells me that he has no choice but to suspend Lily. He tells me that the tutor is terrified, that Lily threatened to kill him. I ask whether it will just be a day’s suspension, whether she will be able to go back next week, or whether it may escalate further, and he admits that he will be undertaking an investigation but that Lily may well be expelled. I’m left begging him not to expel her, swallowing back my tears and my pride. “She’s sixteen,” I find myself saying, “if she gets kicked off the course, she’s got nothing, it’s game over, please don’t expel her.”
He fobs me off and I know from what he’s saying, his tone of voice that it’s already highly unlikely that Lily will be allowed back onto the course. The course she loves, that has lit her up for the first time in her life. Once again she’s not been provided with the support she needs, then been blamed and punished when she’s failed to cope; but now this is not school and the consequences are far more severe. Even I find myself blaming her, For God’s sake Lily, why can’t you behave yourself? Why would you think it was okay to behave like that? In the space of a few mindless minutes, Lily has destroyed the thing she loves most, the college course I’ve spent so much time and energy to get her a place on, the opportunity that we relocated for her to have. The pavement beneath me feels like quicksand. There are no second chances and I have no idea what happens to us now.