My name is Ally and my husband, B, and I, have two children, L, who is six, and N, who is five. N has a non-specific degenerative condition that means that she will gradually outgrow her muscle strength and her motor skills will deteriorate. Because she does not have a specific diagnosis, we have no firm idea of how she will progress.
Currently, she walks with splints and a standing frame, has an electric wheelchair that she is using more and more; and is fed largely by gastrostomy tube, directly to her stomach. Her swallow reflex is very poor and she is prone to both choking and to respiratory illness. She can't be left unattended in case her airways need clearing or she falls. She understands much of what is said to her, but cannot really speak. She communicates largely in sign, which we are learning together as a family.
Despite all this, she is a bright, cheerful little girl, who goes to a 'normal' school and who is a joy to be around.
Our life since N arrived with us has not been the one that we planned to have. We waited a long time to have children. I saw myself reading to them, gardening with them, snuggling on the sofa, day trips to the beach, all the usual things you expect to do as a family. We do do those things; but it is so much harder. If you have children of your own, you will be able to look back and remember the first six weeks of your baby's life, when you travelled everywhere with what seemed like a cart full of stuff, constantly checked their breathing in the night, woke to do night feeds, could do nothing, really, but look after this tiny scrap that couldn't communicate it's needs to you properly.
It's like that for us all the time. And therefore, our base-level of function is exhaustion.
When Sue asked me to write about what the Children's Hospice means to us, a family, I didn't really have a starting point. But I am writing this in our room at Little Bridge House, in my pyjamas at six thirty in the evening. Someone else is feeding N her supper via her gastrostomy. Someone else is looking after L for another half hour until we can coax him in to bed. There are clean towels on the bed in front of me. Lorraine, the chef this evening, greeted me with open arms when we arrived and asked me whether N was still eating as well as she had been when we last visited at the end of February.
N's room has 'Hi N' in patchwork letters on the pinboard. I know that the night staff will turn her if she needs it when she wakes in the night, so I don't have to sleep with one ear open. I will be able to sleep for as long as I can in the morning and not worry about getting up to feed her. I can interact with other people here or not as I choose. I know the Sibling Team will look after Leo all day and that the carers assigned to N will both entertain her and look to her physical needs. The duty doctor will check her over a couple of times this week and we can discuss ideas we may have to improve her quality of life.
My husband and I will be able to gradually wind down. To have a meal made for us rather than eating standing up in the kitchen whilst we blend N's food to put it down her tube. To have a sneaky go in the hot pool after the children are in bed. To go and visit friends locally one evening because one of the office staff is kind enough to volunteer to babysit Leo for us.
Unless you have lived this life, you will have no idea what sheer relief the Children's Hospices provide. We literally wouldn't be able to continue to manage, without the support we get here. When we first started coming, we could probably have been described as a family in crisis. We were both exhausted and had serious doubts about our ability to continue to care for our daughter if her condition progressed as it is suggested it will. Coming every eight weeks for four nights is a life-line for us. We count the days down until our next visit is due. And we know that if we do have a crisis – for example, N was hospitalised with pneumonia at half term – they will do their best to accommodate us should we need that.
On behalf of all of the families who are lucky enough to have a place here, we would like to thank you.
(I am running in the Rainbow Run at Exeter in June, in aid of the hospice. My donations page is here - http://www.chsw.org.uk/chez)