WHY MEMORIES ARE THE MOST PRECIOUS GIFT OF ALL
What’s on your festive wish list this year? For parents of children in the LauraLynn hospice, it’s that they get to spend Christmas Day together...
‘We’re packing in life’s milestone moments’
THE first thing I notice about the LauraLynn children’s hospice are the butterflies. There’s a pretty pink one placed on the sign for the car park. One hangs from a glittering windcatcher at the hospice entrance, another is placed at the reception area and a further is stuck on the door that opens through to the palliative care unit.
In many cultures, the butterfly is symbolic of one’s soul. They are associated with change and transformation, of being on a continuing journey. Here, the butterfly has poignancy because it represents life’s biggest tragedy — the death of a child.
‘The butterflies let staff and visitors know that in the last 24 hours, a child who has been with us has died,’ says Bevan Ritchie, head of care at the hospice. ‘They are used as a mark of respect to the child and the bereaved.’
In the last year alone, Bevan and his team have seen their fair share of butterflies. In 2017, 29 children who have been in the care of LauraLynn have passed away.
At the hospice there’s a room, the Butterfly Suite, where the deceased child can rest, in total privacy with their family, before they are brought for their funeral service and to their final resting place.
They are words that shouldn’t be in the same sentence: funeral and child. Certainly not at this time of year, when most families are happy and excited about December 25th.
But for some parents, their only wish is that their child makes it through the festive period. Others will try to savour every moment of the big day, knowing that this might be their last Christmas together. This is the harsh reality for the families who come to LauraLynn.
And although 350 children die every year in Ireland, thankfully, a children’s hospice is an alien concept to many.
‘Most people don’t know about what we do. Children dying is not in the natural order of things,’ says Bevan. ‘When elderly people pass away, we can deal with it a bit better. With a child, well, you may never get over it. And we are here to acknowledge that and support it, not say we will fix you.’
The basis for LauraLynn came from the world’s first children hospice, Helen and Douglas House in Oxford. LauraLynn was created following the tragic deaths of Brendan and Jane McKenna’s two daughters, Laura, at the age of four, and Lynn who was 13. They started a ten year campaign to get Ireland’s first children’s hospice off the ground, and in 2006, LauraLynn opened its doors in Leopardstown.
The template is simple: eight palliative care beds, four family accommodation units, and play and communal areas. The aim is more complex — to provide specialist palliative and respite care for terminally ill children or those with life-limiting conditions, as well as end of life and bereavement care.
But alongside the medical, psychosocial and counselling work the hospice do with both the afflicted children and their families, there’s another very important aspect — and that’s memory making. At the time of my visit, the team are busy organising the last details for the hospice’s annual Christmas Day.
‘Santa will arrive by helicopter, there’s a choir, entertainment, an elves workshop,’ Bevan says. It may seem like pure unbridled fun — which these desperately sick children don’t get a lot of.
But alongside all the action, something deeper is happening that will resonate for families in years to come, when their child is no longer with them.
‘Our family events, activities and even the play time we have here is therapeutic. It’s targeted intervention,’ reveals Bevan. ‘Research has shown just know how important it is for a child to leave a legacy.’
Mindfulness, music therapy, even laughter yoga are all available to children here. Celebrities and bands pay visits, lend support and do impromptu gigs. The focus is to pack in as many of life’s milestone moments as possible in these children’s very short lives.
One particularly touching initiative are the ‘Oscars’ that are held every year in March. In the weeks leading up to the red carpet event, eight families work with a scriptwriter and film maker and make their very own movie at Windmill Studios. Then, in March, they are whisked in Hummer limousines to the red carpet premiere of their very own movies, as hundreds of screaming teenagers from one of the local schools look on.
‘Last year, one of the children was being carried by his father up the red carpet. He was blind, and snuggled into his dad’s chest, but when he heard his name being chanted, he stretched out his arms and affirmed himself. It was a wow moment. It was really powerful,’ recalls Bevan. Children at the hospice have even been in the first wheelchair production on stage at the Abbey Theatre.
To have something tangible, like a film, or a piece of creative art, is something the family can cherish for years to come.
‘One of our homecare team specialises in making gorgeous pieces of art with the families, such as fingerprint baubles or memory babygros, where other siblings can help create them. Then you’ve got the bauble on the tree or the babygro framed on the wall, and a mother has the memory of sitting down and creating this very special object with her family.’
Being the parent of a terminally ill child takes its toll, and is in itself a full-time job. That’s why respite, and allowing full-time carers to be ‘normal’ mums and dads once in a while, is such an important part of the work that’s done here.
One family who know only too well of the hardship and anxiety that comes with a sick child are the Smiths, from Cavan. Their little boy Jake was diagnosed with a one-ofa-kind brain tumour, a glioblastoma multiforme, the size of a man’s fist, on Christmas Eve in 2014 when he was just two weeks old.
Although his parents were told he would not live to see his first birthday, Jake recently turned three. But following two surgeries and chemotherapy, Jake’s family were told his condition was incurable. Now, he is on an ALK inhibitor that is keeping the tumour at bay. But he requires round the clock care.
‘He is fed through his stomach, and is on various different medications that have to be administered throughout the day and night,’ says mum Andrea of her cherubic little boy. ‘Then there’s daily physiotherapy, speech and language therapy and because the medication can make him very ill, he needs to shower a few times a day. Myself and my husband Padraic have to do shifts to look after him.’
Jake’s illness does not just affect him. Andrea explains how the couple’s two other children, Aoibhin and Joseph, have suffered too.
‘They have had separation anxiety because of the amount of time we have to leave them to stay with Jake at the hospital. We don’t go on holiday. We sometimes miss birthdays. Dance and violin classes had to stop because we are at the hospital, or we don’t have the time.
‘We go to LauraLynn to just get a break, and some space,’ she says. ‘We get 15 days there a year, where we can stay over with Jake. The last time I stayed two nights. I had a total Netflix binge,’ she laughs.
For Andrea, a self-confessed planner, this time of year is particularly difficult. Living with Jake’s condition, which has been described by medics as a ticking time bomb, there’s no real space — or time — for planning.
‘Christmas used to be my favourite time of year,’ she says. ‘I would be planning for next Christmas as soon as one was over. But we can’t live like that any more.’
Dealing with the little practicalities of life, that parents with healthy children don’t have to worry about, can be simply impossible for parents of a child with a life-limiting condition.
‘You can’t bring a child with complex medical needs to the supermarket, or shopping for Christmas clothes.’
Jake, who can walk but doesn’t speak, spends much of his days watching TV. He loves Mickey Mouse, and the movie Mamma Mia, says his mum.
‘He doesn’t play. He doesn’t know how to be a little boy and play with toys. We are hoping that play therapy might help him.’
Because the grim reality of living with a child with such complex needs can be difficult for many to grasp, Bevan notices that many parents become firm friends when they meet at the hospice.
‘It’s an outlet where parents of these children can socialise and relate. Some mums say that coming here is like standing and chatting at the school gates,’ says Bevan. ‘But instead of talking about what happened in the school yard yesterday, they might share tips about feeding tubes and that kind of thing.’
A big part of LauraLynn’s work is the LauraLynn@Home programme, which provides hospice care for children in their own homes. At the moment, children can be referred from anywhere in Ireland, and LauraLynn is currently supporting 180 families who need children hospice care. It’s a lot, but it’s not enough, says Bevan, adding that although the hospice receives funds from the state, the majority comes from fundraising.
‘We estimate that up to 730 children need hospice care in this country. If we are supporting 180, what is happening to the other families? Where are they and what services do they need?’
And what most children with terminal illness want, Bevan reveals, is to die at home with their family.
‘We want to give families a choice.
‘We are comfortable with death here’ ‘Every child wants to be home for Christmas’
People talk about having a good death. It’s vital in reflection after a child has passed, that the family knew they were safe and secure,’ says Bevan.
No parent wants to go through LauraLynn’s doors. And at this time of year, the season of heightened emotions, not to mention the reality of trying to deal with other siblings and getting things organised, having a dying child is particularly hard.
‘Most families try to normalise Christmas as much as possible,’ says Bevan. ‘It needs to be that way for other siblings, although we have had situations where we’ve brought Christmas – and birthdays — forward. But trying to keep everything normal is key. And it’s amazing how well families will cope.’
This Christmas, the LauraLynn team have no planned stays or admissions. However, if there is a medical emergency, and if a child is gravely unwell or dying, there will be staff on call to respond.
‘Every child wants to be at home at Christmas,’ says Bevan, adding that the hospice team are checking in with a couple of families of gravely ill children at the moment, working with community support and local GPs. ‘But the situation is constantly changing.’
Standing in the reception area, it’s hard to believe I am in a hospice. A Christmas tree in the corner is adorned with twinkling lights, decorations hang happily from the ceiling and children’s art is everywhere. There’s a play area with games for children, an outdoor playground, colourful cartoon characters and a general positive ambiance. A radio with Christmas music plays unobtrusively in the background.
Through to the rooms and suites, the atmosphere remains as upbeat as possible. There’s a TV screen with the names and photos of staff on that day, and lots of different art on the walls. The names of the rooms are illustrated with Frozen movie stickers.
There’s no silence, lit candles or a clinical setting. There are no uniforms, and staff wear their own clothes. But if you look closely, there are clues. A memory tree with children’s names and RIP messages. A beautiful poem about dying hangs on the wall, written by 14-year old Lynn, daughter of the hospice’s founders, 12 days before she died. A box of tissues on a table in a central meeting space. And of course, there’s the butterflies.
I comment about how different I thought the place would be.
‘A hospice is not just about death and dying,’ replies Bevan. ‘We concentrate on helping children live their lives to the full, and supporting their families as they do so. But we are comfortable with death here,’ says Bevan. ‘When a child is getting to the end of their life, we are OK talking about it.’
We continue to the living area, where three children, two in wheelchairs, are sitting, playing with soft toys. The third is lying on a bed away from me, her hand stroking a toy as a nurse tends to her.
I’m struck by the normality of the place, the absence of medical paraphernalia.
‘It’s there,’ Bevan says, pointing to panels that line the walls. ‘If at any stage a child is in medical distress, all the equipment is at arm’s length.’
We venture into one of the family suites, which has adjoining bedrooms for the child and their parents. It looks like a pleasant hotel room, with carpet and draped curtains.
‘They are antibacterial,’ says Bevan, noting my surprise. ‘And these —’ he opens a wardrobe to reveal a drop down hoist and suction and oxygen facilities — ‘are stored in here.’
The child’s bed, supported on three sides, can be pulled into the parents room and put between their beds, if they are distressed or at end of life. Down the corridor in another room, a huge sunken bath lies under a ceiling of sensory lights.
‘Sometimes, a parents greatest wish is to bathe their baby before they pass away. We have had whole families go in and use that bath together,’ says Bevan. ‘Whatever makes them happy and provides those cherished memories, we will do whatever we can to accommodate them.’
As although the hospice is made as homely as possible, it is still a facility for children with highly complex medical needs. It is still a facility for children whose lives will be cut tragically short.
And although the staff don’t wear uniforms and are warm and engaging, they are highly skilled medical professionals — who probably have the toughest jobs in the world.
‘It does take a special kind of person to work here,’ says Bevan. ‘They have to deal with myriad health and pyschosocial issues. We talk openly about death and dying. In a way, we have normalised something that’s not normal. And it’s not because we have stopped caring,’ he says.
‘Our team is very good at being able to deal with highly emotional situations. There’s always staff support available, and we make sure a staff member is not being continually exposed to traumatic situations.
‘We hold a debriefing every time a child passes away, asking how things went, how the team coped. If you don’t have these things in place, as a hospice worker, you will burn out.’
Since speaking about death is something many of us struggle with, coping with the questions from a gravely ill child, about whether they are going to die, or what happens after they die, is a hugely important part of what’s done here.
‘Most people — certainly children — are more resilient than we give them credit for. And children, depending on their cognitive ability, nearly always know they are dying,’ reveals Bevan.
‘When a child asks outright, am I dying, you should never lie. If you don’t feel comfortable, you can say something like, I can’t talk about it now, but let me come back to you. Children generally will only ask a question they are happy to know the answer to. Of course it’s deeply upsetting for the parents, because its affirming their own fears,’ says Bevan.
Children’s tendency to take things at face value, in fact, is something that needs careful consideration.
‘You have to watch what you say to the child who is dying and also to their siblings. People sometimes use the analogy ‘the long sleep’ when they talk about death. But children know people go to bed to sleep and wake up in the morning. When speaking of burial, you might describe it instead as a place to be kept safe, for example.’
The hospice has a play therapist and grief counsellor, who works with not only the sick children and their parents, but also their siblings, to help them cope along the heartbreaking journey of losing a brother or sister.
‘We usually start grief work before a death takes place,’ says Bevan. ‘It’s a really sensitive area. The way we deal with our first grief dictates a pattern of how we deal with loss in our lifetime.’
And for the sibling of a dying child, there’s a series of small losses — the playdates that don’t happen, the cancelled holidays — all building to the ultimate loss of their kin.
‘That’s why it’s a long process. We’ll focus on age-appropriate intervention as the child gets older and processes the loss in different ways. We try to fill in all the gaps where they may not have previously understood.’
Traditionally, the time spent in a hospice for an adult is less than six months. But this is different for children with life limiting conditions, explains Bevan.
‘Some children we tend to may not be imminently dying but might in the next couple of years. In the meantime, the children and their families can be supported. The child can get the wish list together, and parents can begin to deal with the fact that their child may only be with them for a short time.’
Families like the Smiths are all too aware that time is the most precious commodity they have. And as they prepare to spend Christmas together at home this year, Andrea is determined to keep positive about the future.
‘I have no control over this situation. Some days I feel like the world is crashing around my ears, but then I shake myself and get on with things.
‘I want this Christmas to be as normal as possible. I want my family to enjoy it, and have lovely memories. I want our lives to be happy. I want Jake to be happy.’
A CHRISTMAS Wish is the theme of this year’s LauraLynn appeal, to help raise vital funds to maintain the services they provide to families across Ireland. To donate, go to lauralynn.ie or phone 01-2893151