The Pyjama Appeal

My name is Simon, and I am Honey’s Dad. I would like to share with you the story of Honey, who is now four years old. Although she is a very sick little girl, Honey really enjoys the time she spends with her Julia’s House carers both at home and in the hospice; she especially likes the multi-sensory room in the hospice where, with the help of the ultra violet lights, she is able to use special paints and with help paint pictures for us.

Jane, Honey’s mum, had an incredibly smooth pregnancy with Honey. Everything went very well and there were no problems. When Jane’s labour started, we assumed that the birth would be trouble free. How wrong we were. Everything went wrong and ultimately Jane was rushed into theatre for an emergency caesarean. She was a whisper away from death and Honey ended up in intensive care.

Jane recovered after the birth, but our new baby, Honey, was starved of oxygen at birth, resulting in severe Cerebral Palsy, Quadriplegia and Blindness. Honey was left in a non-responsive state. Within 10 minutes of birth, our lives were turned upside down.

We were both in a state of extreme shock and clutched at anything and anyone for help. When Honey was ready to come home after six weeks, the hospital gave us armfuls of literature about caring for Honey, but not what we so desperately needed: skilled people with time to help.

What’s it like living with a ‘special’ child? There is no comparison. You survive one day at a time. We had a baby that screamed in great pain when fed. She was sick at every feed. She was a baby that did not sleep; a baby that couldn’t be put down to play as she couldn’t see or hold any toys. A baby not expected to ever walk or do anything for herself. Her only comfort was being held. Even now she wakes several times a night for comforting, so we long for a night of unbroken sleep.

The one thing that parents with special needs children need is respite; some time off from complex care to be with each other. You see, everything we have lived through is bad news, especially in the beginning. You need time to come to terms with what has happened, whilst dealing with the complex needs of an extremely ill baby. With overnight care Julia’s House can give us and many other families more of that time.

When nobody else cared, or at least not enough to help, Julia’s House was there. We were drowning and they simply rescued us.

We can’t just hand Honey over to anybody, so we are grateful that she can visit Julia’s House and be looked after by staff that we and Honey know and trust. The wonderful team of Julia’s House Nurses and Carers look after Honey at home and in the hospice. This is for regular day care, once or twice a week throughout the year. Honey has all the facilities she needs there and the stimulation she receives is extremely positive.

For all Julia’s House parents times are sometimes inevitably dark. With overnight respite care, Julia’s House will light the way.

With the help of Julia’s House, we cope. We function and we get through life. We are so grateful for their help, and for the support that keeps them going. Please support the Pyjama Appeal and help give night-time care to children like Honey.