The first time Hugh’s newly-assigned palliative care nurse mentioned Acorns to me, I shook my head and refused to be drawn into the conversation. There was no way I was taking my baby to a Children’s Hospice. No way. Hugh was only 18 months old.
|Hugh's first visit to Acorns|
We had ‘the talk’ then in hospital. We were ushered to a side room while nurses stood guard around his bed. I knew what was coming, but still couldn’t believe or accept the words I’d been told. Hugh’s condition was life threatening. He was unlikely to live to be an adult. In all probability his seizures would kill him.
It’s a strange sort of way to live, knowing that at any moment your child might be taken from you. You try to adjust. You develop a new kind of normal. But it’s there lurking in the back of your mind all the time.
We took Hugh home eventually. He was still heavily sedated, still unable to smile and was now fed through a tube in his nose. We’d taken him into hospital for something that had become almost routine to us, and we left some time later with a palliative care nurse, a feeding tube, oxygen and a bag and mask so we could resuscitate him, and a child that no longer resembled the one we’d grown to know and love.
Our palliative care nurse broached the subject of using Acorns again and again, tentatively, tactfully, until one day I agreed to listen.
Hospice conjures up so many images; death, dying, misery, sadness, suffering. I didn’t want to associate myself or my child with any of those things. I was strongly in denial over Hugh’s prognosis, I wasn’t prepared to accept that future for my child. But what finally tempted me to even remotely entertain the idea was that it might enable us, as a family, to spend time with Sean our eldest whilst Hugh was cared for by nurses.
|Acorns treat the family to a day out at the zoo. (June 2012)|
Our first attempt to visit was thwarted as just half way there Hugh stopped breathing in the back of the car. We stopped at the side of a busy dual carriageway and I knelt in the mud and gave him mouth to mouth as cars whizzed by. I was shook by that one incident more than any of the hundreds of previous times before. I became terrified of even leaving the house, just in case. I could no longer turn my back on Hugh – there was always the very real risk he wouldn’t be breathing on my return. It meant that every single moment of every single day, I was on high alert, ready to respond should it happen again. And it did. Again and again and again. It was exhausting.
We finally managed to visit Acorns and were welcomed like long lost family. It was warm and inviting and brightly coloured and didn’t smell of hospitals. I loved it and hated it in equal measures. I loved the atmosphere and warmth and all the opportunities for both the boys. Sean was taken away by a volunteer befriender to eat biscuits and dress up as Sully from Monsters Inc, while we drank tea and talked to the nurses. The sensory room was just magical and the hydrotherapy pool promised us the opportunity to go swimming together as a family – something we’d never managed before.
But... But ... But ...
As we wandered the grounds and ventured into the beautiful, spiritual, peaceful tranquillity of the memorial gardens and I seen the names etched on stones in the rivers and the birthday balloons and flowers, I had to bite back the tears and swallow the huge lump in my throat. I couldn’t bear that future for my baby. I still can’t.
But the staff at Acorns understand that. They expect and appreciate and address your worst, most terrible fears. Yes, dying is an aspect of life at Acorns. They provide wonderful end of life care for countless families. They support them in preparation for that, through the final stages and beyond. Bereaved families continue to receive support from Acorns for as long as they want it. Thankfully I haven’t had to consider this aspect of their care in too much detail yet, but I know one day I might and (I can say this now, but it has taken me a long time to get to this stage), I am glad that Acorns will be there to guide and support us if and when that time comes.
Acorns don’t just offer end of life care though, they offer respite too. Each week the hospice at Selly Oak look after up to 10 children with complex medical conditions and high levels of care to give their parents and carers a break from the enormity of their role.
|Being able to swim together at Acorns is really special|
We slowly, gradually moved from day-care to overnight care, with the whole family staying upstairs while Hugh was cared for by nurses downstairs. We could visit him however many times we wanted. And I did. Sean loved it. There’s an xBox in the family suite. He couldn’t believe his luck. We’ve not stayed there for a while and he still asks now if we can go to stay.
Hugh has stayed there for two and three night breaks – by himself – since then and I am OK
with that. Better than OK, I enjoy it. I enjoy myself. Last weekend I danced and drank beer and
danced some more until the wee small hours of the morning, safe in the
knowledge that I wouldn’t have to get up with Hugh countless times in the
night. I had a brilliant night out with
my husband. Without Acorns, I couldn’t have
done that. We’ve both taken Sean to the
cinema and out for dinner and to a cold and noisy swimming pool with
slides. Without Acorns, we couldn’t have
done that. Acorns have helped bring a
little normality into our crazy, exhausting, medically dominated life. They’ve allowed me to be me again. They’ve helped me trust others. They’ve enabled me to spend time with my
husband. They’ve helped us both spend
time with Sean, together. They helped us
go swimming as a family and spend quality time together, all four of us. They’ve introduced me to other mums and other
families in similar positions so I don’t feel so isolated and alone. There’s a Dad’s club too (though Stephen hasn’t
joined – yet), and a siblings club so Sean can meet other children who will
understand the huge mix of emotions that he must feel.
|Hugh and I in the wonderful sensory room|
I wish, with all my heart, that Hugh didn’t have a condition that was life threatening; with every fibre of my being I’d love to just expect him to grow old and grey, rather than it just being a whisper of a hope. But this is the life he has, the life we have, and I couldn’t think of anybody better to support us and guide us and help us through this emotional, exciting rollercoaster of life, than Acorns.
***** ***** *****
I've written this post to raise awareness of #acornsday which is on 23rd March 2014 (the day before Hugh's 4th birthday - a birthday we never expected to see). Aston Villa are hosting hosting a range of activities to raise £100,000 for Acorns, culminating in a home match against Stoke City. You can find out more here: http://www.acorns.org.uk/acornsday