By Maxine Hardy
One day our family life was amazing and one day it wasn’t.
One day my 15 year old bright, athletic, happy and energetic daughter was healthy, with the world at her fingertips, and then one day she wasn’t.
That day was so vivid in my mind…the horror of it. Knowing that yesterday she was living and that today she just wasn’t. The horror of knowing we could never go back to that life we loved and yearned for. The grief was just so overwhelming – I fought to get back to my old life so robustly. How did I allow this to happen? Who is to blame? Ok, someone tell me what I need to do and I will do it. Except that if I’d been told then exactly what I needed to do I would have perhaps stumbled at the first hurdle. The pit of despair would have been too much. There was certainly frustration about not knowing ED would roar into life when we systematically refed 3 meals and 3 snacks a day. It’s supposed to get better isn’t it – giving the patient medicine (food)? And oh, the endless appointments. I kept a diary which helped me reflect and evidence to my employer just what we had to deal with to keep our family together and alive and to keep being paid, despite not being able to work by adopting Life Stops Until You Eat. I needed everyone on board this sinking ship to help us plug the holes. And sure enough they came. I remember the gratitude I felt towards teachers, friends, my GP, family and even the joiner who fitted a lock on a downstairs cupboard and asked about this strange request. I made an excuse about it being a medicine cabinet…”a huge medicine cabinet” he joked and then realised that he’d pushed too much and quietly finished the job. Even him being there doing work in the house made me feel normal again, despite the reality of needing the cupboard to assist us in storing poisons and sharps to prevent suicide attempts.
We tried to get back to normal by holidaying (not sure it had the same meaning anymore!) and realised we were actually in a new normal with our 16/17 year old who still had hopes and dreams. ED told us it wanted to give up all the A grades and dreams of university to work at a gymnasium. We agreed to support her when the time came to make choices and if that was her dream then so be it. No point in arguing with illogical ED was my take on it. GCSEs came and went. A levels came and went. Thankfully aspirations of being a personal trainer (ED exercise driven of course) came and went.
There were moments in year 2 when I thought there was no way she could live independently away at university without falling back down the rabbit hole but hope was always that constant from day one. Hope kept us going and was our best friend. It never let us down, even when ED was stubborn or spewing hate.
The turning point was calling in at a service station after an appointment that overran and telling her to pick a snack to eat. The decision was too much and she couldn’t do it. Frustration got the better of me and I snapped “and that’s why I can’t see you starting university in September” The tears flowed and the anger followed but I was resolute – good decisions around self care needed to be plentiful before I could be confident in allowing her to fly the nest – with our support (financial or otherwise). Tensions between my husband and I widened the gaps forming in our previously impenetrable relationship. Accusations from both sides – he didn’t support me in reducing exercise properly…I was too alarmist and seeing danger everywhere etc. We had to be united to travel this path but it was so difficult to be on that same page.
We still had hope of full recovery and were all separately treading the same path and at some points stumbling off it. We needed to work together as a team to stay on the path. As scary as it seemed I needed to be prepared to let my husband lead from the front and on occasions my daughter too. As we walked through year 3 she started to walk in front and lead the way a lot more. She flourished being in front and we came to trust her confidence more.
She did start university- what a proud moment dropping her off there to start a new adventure. I suppressed all those anxieties and trusted I could respond to any issues. We were tested on one occasion early on but she got back on the path herself and showed us she was still leading the way.
Hope remained our friend and showed us just what our amazing girl is capable of. She successfully manages her own life, is happy; and more importantly, healthy.
Mantras have been so important to us for the family to keep reminding ourselves what is important: Food is medicine – Everything in moderation- All food is good – You can’t eat an elephant whole but you can if you take it in little chunks.
One day – I look forward to living one day at a time. I’m loving our new life!