Christmas In a Very Special Home

‘I don’t like the word ‘merry’,’ frowns Sister Frances Dominica, founder and trustee of Helen House children’s hospice, and later Douglas House for young adults. ‘It’s used everywhere at Christmas and yet, for many people, it is such an inappropriate word for what they are experiencing.’

Which is not to say that the Christmas atmosphere at the two houses is grey and sombre. Far from it. As always the surroundings in this tucked-away haven in central Oxford are warm, colourful, lively and welcoming.

Children help to put up the Christmas decorations, activity rooms are awash with glitter and glue, local singing and acting groups put on performances, and the carol service and Santa’s Grotto are ever popular. The professional care teams and volunteers work hard to provide comfort and happiness for their guests, with home-from-home comforts and unswerving support.

But what they aim to provide, above all, says Sister Frances, and what is most valued by the families who visit, is the chance to stop pretending. The freedom to say how they really feel, be how they want to be, and to know that everyone understands and that they are not, after all, alone.

This ethos is true of Helen and Douglas House throughout the year, but it is especially poignant at Christmas. In few other places will you find laughter and tragedy occurring simultaneously within corridors of each other. Here, it is a constant possibility.

For Louise and Leighton Scarlett and daughter Elisha, Christmas two years ago meant the loss of their precious one-year-old boy, Courtney, who had been born with an enlarged heart and suffered constant illness. Through the festive period Courtney lay in the special ‘Little Room’ at Helen House until his funeral, surrounded by his toys and visited often by his family.
Despite their desolation his parents said the festivities just down the corridor were comforting to hear, knowing life went on but that there was no pressure to join in and put on a brave face. They were grateful for the ‘cocooning’ love of Helen House that let them say goodbye to Courtney in their own way and time, and supported them both practically and emotionally.
After a quarter of a century caring for terminally-ill children, Sister Frances says it never gets any easier to see a child robbed of the innocence, hope and expectancy that is their right.
‘I think if I’m asked how God could let this happen I probably have fewer answers now than I had 20 years ago. I can’t reason for my faith or put it into words. It’s not an intellectual thing, it’s in the seat of my being, a sure rock to cling to. I think all that any of us can do, faced with such suffering, is to stand alongside as friends and companions and hopefully share and ease the burden a little, and help make the most of whatever time a child has got.’

It is the ethos of Helen and Douglas House, now followed in children’s hospices around the world, that though a life may not be long it can still be lived deeply.

The years after diagnosis for a life-limiting illness are a physically and emotionally exhausting roller-coaster ride for the entire family. So a major role of the hospice is respite care, enriching the lives of those who are ill, and their families, and offering parents and siblings a vital break from the punishingly lonely routine of 24-hour caring, 365 days a year.

Jane and Steve Green and their daughter, Emily, visited Helen House many times. Their daughter was diagnosed as having a rare, regressive and terminal condition.

Helen said: ‘Even though our daughter died 12 years ago now, we still keep in touch with Helen House, and attend the remembrance service when all the Helen House children are remembered....We had some wonderful times there, some good laughs, and made some lasting friends. It allowed us to relax, be ourselves for a few days, get some sleep and generally be fussed over. Our other daughter loved going there -– the Art and Craft room was like Aladdin’s Cave to her!

‘In going to Helen House we met other children and families in the same situation – an invaluable experience. You learn so much from each other.

‘For families like us, life would have been much harder, if not impossible at times, without Helen House.’

Families might come in together and stay in one of the flats. As well as help with medical care and facilities such as therapy, massage, sensory rooms and a Jacuzzi, these stays are usually a hit with siblings too, as this sister testifies: ‘There is a carer who spoils him [my brother] rotten, they do anything he wants (which is usually to be massaged, hugged and kissed). We also have a wonderful play-helper who sets us activities, arts and crafts, dressing up and sometimes we get to go on outings which are FAB! We get to do fashion shows and dance routines and we put on little shows for all the staff and special children. They love it! And so do we!’

Children may also visit alone. For the teenagers at Douglas House this new-found freedom also fulfils a vital need for independence that their condition has otherwise denied them, whether it’s making use of the very plush bar, or partying the night away at the New Year’s Eve bash.

But back now to Christmas, and Helen and Douglas House also extends a warm welcome to previously bereaved families who often pop in, or attend the annual remembrance service in the nearby Wesley Memorial Hall.

Chaplain Mark Birch leads the service. He says people welcome the opportunity to gather with others who have shared their experience, and to feel free to acknowledge their continuing sense of loss and grief which friends and family can find upsetting, or to which the wider world can seem ambivalent. For all that, he says, it is a lively and uplifting service, with the chance for a chat later over tea and mince pies.

So as staff and volunteers dig out the tinsel and wrap the presents in preparation for another Christmas at Helen and Douglas House this year, they will also be concentrating on another important gift for the families that will seek them out – that all important chance to drop the pretence and be themselves.

Sister Frances says:  ‘In the very midst of such suffering, each moment is a gift…In the immortal words of Kahlil Gibran: ‘The deeper that sorrow carves into your being, the more joy you can contain’. These are not pious aspirations. We are privileged to see them re-enacted day-by-day.’ Especially at Christmas.