When every moment counts, the constant fighting, medications, therapies and strain take their toll on anyones reserves. And that is why children’s hospice care is such a lifeline. Sam’s condition is not life-limiting per se, but his seizures are classed as being life-threatening and as such he qualifies for hospice respite care.
When I first heard this, my heart broke into a million pieces. No-one wants to hear that their child’s life is blighted like this, and I went into denial over how much we needed this support. After almost 9 months of living Hell, and being at rock bottom, my GP once again gently broached the subject of hospice care. She could see what we couldn’t, that continuing on that isolating path would end up destroying us both. I was still on maternity leave and was becoming more and more depressed and isolated with every passing day; J was worried sick about both me and Sam. So, with a heavy heart and scared more than I can say, we arranged to be contacted by one of the hospice care workers. I felt like we were writing our boy off accepting that he needed hospice care. That visit was made by Debbie, one of the care coordinators from the hospice. She explained about what they do there, how they could help us and also let us know that we didn’t have to come to the hospice if we didn’t want to. Support could be arranged in our own home if that suited us better. And that’s how it started - we had a visit from one of the hospice staff every so often when we needed help, just to take some of the pressure off, and we started to see how this support was already benefiting us all… I started to sleep properly again for the first time since Sam’s birth, Sam was happy with a new friend to play with that wasn’t Mummy or Daddy and J relaxed and found work to be less exhausting, as we wasn’t so worried about how I was managing.
After several visits we felt the time was right to go and see the hospice itself. For us in Staffordshire, our local hospice is the wonderful Treetops, run by the Donna Louise Trust. Far from the clinical environment I expected to see, on walking into the hospice I was amazed by the warmth and joy in the place… Children were running all over the place, there was painting and baking going on, teenagers were in the family lounge playing computer games on the big screen TV, and the giggling coming from the soft play area was infectious! We were met by Debbie, the care coordinator who had visited us previously and she greeted us like old friends! Over large mugs of tea and biscuits we chatted about the services available at the hospice, a full tour of the place followed and before we left we’d already booked in for our first overnight stay with Sam. The building is arranged so the children’s bedrooms are downstairs while the parents sleep upstairs (although families don’t have to stay if they’d rather not, we usually choose to do so as Sam’s seizures are so unpredictable and I feel happier being there just in case something happens).
The children’s rooms are beautifully decorated, bright and colourful - each room has hoist tracking and oxygen piped through the walls but done so in such a way that it isn’t obvious unless you look for it. The rooms have their own sinks some with sensors allowing wheelchair bound children/young people to operate the taps themselves; some change height too. Each room is equipped with SN beds or cots to cater to the varied needs of the young people who use the hospice. Sam’s room has a full sized bed which has tilt function and allows his carers to change the profile of the bed to keep him comfortable and safe, it also has clear sides so carers can keep a watchful eye over him during the night without having to disturb him. Day or night, there are care support workers, children’s nurses and play specialists present to ensure the children are able to have the best time possible. In addition, each room also has a wall mounted TV! The parent’s rooms are fantastic too - all are en suite, and there are family rooms available so siblings or Grandparents can stay over too.
The rooms are beautifully decorated, comfortable and allow even the most stressed/exhausted of parents to finally relax and rest.
Over the past 3 years, we’ve had many overnight stays at Treetops and it’s like a second home to us. Sam loves being there, we love being there. The hospice recently did an overhaul of their garden play areas, so now in addition to the facilities indoors the children have access to a purpose built and fully accessible play area with wheelchair swings, climbing frames, wheelchair roundabouts and a trampoline inset into the ground! We are currently enjoying a 3 night stay; I woke up after our first night without a headache. For the first time since our last stay in January. Knowing that Sam is happy and having fun allows us to rest properly, although both of us work being able to leave Sam knowing that he’s having full care and is safe means the world to us.
Sam’s favourite place is the sensory room, followed closely by the jacuzzi! For us its better than going on holiday - for the few days we are there we don’t have to worry about medications, therapies, meds schedules… we can just be a family and enjoy time with our little boy.
For many families, hospice support takes on even greater significance as their child succumbs to their condition and it becomes apparent that they are now under palliative, end of life care. Just like always, the hospice and its family of staff are there for those in crisis; there are counsellors present to help every member of the family to deal with events, children who are reaching the end of their lives may be fully aware of this and the impact that their passing will have on their loved ones. Children who are losing the battle against cancer for example. The specialist support available at the hospice also extends to care at home for those who would rather pass away at home.
The sensitivity and gentleness of those at the hospice just wraps around those who are suffering, they can’t take the agony away but they provide support in the darkest of times. Several of our friends have lost their precious children over the past few years, many others face the reality that they could lose them at any time. Hospice support is invaluable but receives pitiful funding support, we need to spread awareness of just how crucial this support really is to families in the darkest days of their lives. I just can’t put into words how vital this support has been for my family and those of many friends.
Please, please spread the word. Every family deserves to enjoy every moment x.
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