So Fragile…

As usual, I have left it too long to write a blog post and so much had happened that it’s hard to quantify in one post…but I shall give it a good go!

My last blog post spoke of us finally working towards a discharge for Lizzie. Hope and excitement was high. Pinnacle to the discharge plan was the fact that Lizzie would be starting at a therapeutic school, about 20 miles from our home. Initially, she would attend on a phased basis over a 3 or 4 week period to integrate her slowly before she began attending full time. With the assurance of her first visit to the school being imminent, Lizzie was then taken off of her Section.

Alarm bells started to ring however because removing her from her section was decided during a Ward round that I was not present in, and the hospital failed to inform either me or our local CAMHS team. That same day, Lizzie was sent home on extended leave because her school visit was apparently scheduled for the following week: only we knew nothing of the visit and on the Friday before it was due to take place (the following Tuesday), nothing had been confirmed.

That Saturday night, my brave girl told me that her suicidal ideation was vivid and escalating and she wasn’t sure she could keep herself safe. She asked to go back to hospital. I had just donned my pj’s and poured a glass of wine….irrelevant in the face of her request, so we set off. She sobbed in the car. She was struggling so much with the pain inside and was so afraid that she would jeopardise her discharge. My heart broke as I listened to her and as we sped down the motorway, I struggled so hard not to cry too.

Times like this are so difficult because regardless of how much hope we feel and the excitement at the prospect of recovery, episodes like these make me realise just what an absolute, dark and deep pit my beautiful baby is in. She scrabbles her way towards the top, only to run out of energy and slide back down again. She spoke about her fragility and the raw pain of loosing her friend Rachel. She said that Rachel was such a bright light and her life was so much darker without her. This terrifies me. It all terrifies me. Rachel was a game changer; she was bright and smart and she clearly had an impact on everyone she met. She was going to change the world. Lizzie is a game changer; she is bright and smart and has an impact on everyone she meets. She is going to change the world….

I know many people who read this blog have lost a loved one to suicide: I bet, on the whole, they were exactly the same as Rachel & Lizzie? What is it about these precious people that drives them to this place? They have so much potential, so much love to give….is it too much? Are they so special, hold so much power to make a difference that they just can’t handle it? This isn’t an illness; it may make them ill, but it is a gift. If it is like this, then our poor, beautiful children, our partners, our parent, our friend, carry such a burden. And do you know what, we can’t shoulder that for them; we can’t help them carry it because it is how they are wired, what they were meant for. But with that realisation comes absolute impotence and desperation that we can’t help.

Anyway, an hour and a half later, as we arrived back at the hospital. We stepped inside and Lizzie realised being there heightened her anxiety, not reduced it. Focusing on discharge and finally looking at life outside of hospital, coupled with an extended period at home, meant that this was no longer her “safe place”….and she wanted to go home. She became insistent, then angry, then as the realisation dawned that they were not going to allow her home that night, hysterical. I was in such a difficult place: swimming around my head was the fact that she had been taken of Section so she technically didn’t have to stay, (but I wasn’t 100% sure her section had been lifted because I hadn’t been informed!), yet how could I take her back home if she was such high risk? The hospital insisted she should stay and that I should leave. Like having a child at nursery screaming for you to stay, I knew the kindest way to deal with this would be like whipping a plaster off…quickly. I made a swift decision and left my sobbing, hysterically screaming daughter behind me as I ran for the door.

Times like these make me feel like I am so fragile, physically, that I will snap in two: I feel hollow and like I must weigh about 3 stone; yet the emotion is heavy and all consuming; it seeps out of every pore. I sobbed all the way home.

We collected Lizzie and bought her home the next day.

Lizzie hasn’t been back to hospital since then. Well, that’s not strictly true, she returned the following Wednesday with me for Ward round for about half an hour and was then granted extended leave again, for another 7 days.

This post is long enough: I shall write again soon about the decline of this past week. Suffice to say that a significant lack of support during this “transition” from a lengthy, almost 6 month admission to being allowed home pretty much permanently, and the failure of her hospital to adequately secure her educational place, have left my daughter, and us all, floundering, lost and desperate.

Formal complaints have been made, warnings have been issued and my voice has been raised as my daughter’s declines. CAMHS have been the true heroes in our story and are holding a torch for us to light the way. I am currently sat beside my daughter’s bed in our local general hospital, following another overdose 2 days ago. She is physically OK but her liver is reaching dangerous levels and she has been warned that it will not sustain much more paracetamol abuse before it starts to fail. We will hopefully be discharged tomorrow but the battle that is about to commence is one of magnitude and will determine how we move forwards, if at all…….

Stay strong x