Dearest Daniel,
In a few weeks you will be fifteen years old…
I have been thinking about the story we know by heart called: “We are going on a Bear Hunt.” Do you remember how the whole family and their dog go on an adventure to catch a bear, and they have to scramble through lots of obstacles to find the cave where the bear is hiding. Do you remember how the verse in the middle goes, Daniel? “We’re going on a bear hunt, we’re going to catch a big one, we’re not scared”…. they come to a river, a deep cold river. They can’t go over it, they can’t go under it, they can’t go around it, they have to go THROUGH it. They walked through tall swishy grass, waded through the sticky mud, stumbled through the deep, dark wood and shivered their way through the swirling whirling snow storm until they reached the cave. They did it together, even though they were a bit scared – and when they saw the bear, and it began to chase them, they ran away together, holding hands, and got safely home and locked the door and hid under the bed-covers and shivered with the excitement of the hunt!
Well, I think that you being sick with leukodystrophy is a bit like being on our own bear hunt. It’s sometimes exciting, sometimes difficult, and often scary, and just like those things in the story: We can’t go over it, under it or around it but have got to go through it. But we are not alone, there are friends who walk with us, and like the family in the book, we will hold hands and stick together.
This adventure has not been what I have would have for you, and it has pushed us both beyond the limits we thought we had. I’m trying to find the right balance between doing and not doing; between fighting back and letting go. I know that I have so much to learn from you still. I’m still trying to figure out who to trust, and how to weigh mind over emotion, but still searching your eyes for clues on how to proceed.
A wise man once wrote a song that sums it up well…
“du bist ein Geschenk…seit ich dich kenne, trage ich glueck in blick…” “You are a gift…and ever since I have known you, I see life through joy” (Herbert Groenemeyer) and he is exactly right…You are a gift to me, Daniel, the best gift ever!
… even though this “bear hunt” we are part of is sometimes very scary…
…and even though there are things we have to go through that we wish we didn’t…
…and even though our time together will not be long.
You have redefined joy for me, redefined it with pain, perhaps. But the very worth that is your life is something that has made my life the richer for the shared journey.
I love you, and I am so proud of you!
Your Mommy
Daniel has Alexander’s Leukodystrophy, a rare, progressive neurodegenerative disease caused by random genetic mutation and resulting in the steady loss of all previously learned cognitive and motor skills. It eventually affects the brain stem, shutting off the body’s basic life support functions. There is no cure. Treatment is symptomatic and supportive. The question is not if he will die, because we know he will die (sooner than a healthy child), but where he will die and how. There is little I can control, but I do what I can. Kiho (Kinderhospiz) is a rare oasis where the little I can do for Daniel is made possible, and the emphasis is on living well rather than long.
Even though he is severely affected by this disease, Daniel loves to laugh, recognises the people he loves, follows his stories avidly and listens to his music with obvious pleasure.
Kinderhospiz is not a hospital, though intensive care and treatment is sometimes given. It is not a typical holiday destination, although it is full of children, siblings and parents intent on relaxing and having a good time. Kiho is a home in the truest sense of the word. It is for the ill and the well, for those who have lost a child and for those who have just found out that their child will die, for those who are facing death but also for those who will be left behind. By bridging the divide between dying and living with the wonderful care they give, they rewrite old rules and push back the boundaries of conventional grieving. Living and dying, loss and gain, joy and grief share the same table… they break bread together.
It’s 08h45 and I am sitting in the airy colourful day room, with my elbows on the table, sipping coffee with K., a young mother whose son “made his journey” six months ago and who is here to visit the unit for a few days. C. was 6 years old and died from a rare brain disease. His twin was unaffected by the disease and sits next to his mother playing with a Lego space ship in-between bites of Nutella on toast . K. and I had shared a few respite care visits before this. Grief was our first meeting place, but a mum-to-mum friendship with shared interests became our common ground. Across from me Wilhelm deftly connects the feeding tube for P’s breakfast and, with his arm resting across the back of the wheelchair, ruffles his hair affectionately, and talks with him about the plans for the day. The clowns will visit before lunch and there is a walk to the local ice cream shop planned for the afternoon. P. doesn’t respond verbally, but his eyes are fixed on his carer’s face. To my right, J’s ventilator fixed to the back of his electric wheelchair sighs rhythmically – and he talks softly …. in short sentences… pacing the words… with each breath. He and a young volunteer are discussing Bayer Muenchen’s latest performance in the football playoffs.
Dan’s oxygen alarms sound, and I turn briefly to see his nurse suctioning his trache – her reassuring nod gives me the sign to relax. His big bed is pushed up against the window so that he can see the shafts of sunlight play with a bright mobile above his head. I resume chatting with C, while carer Simone emerges from the pool area pushing a stroller in which sits the freshly bathed N., in a fuzzy bathrobe, her cheeks glowing, her hair freshly brushed into jaunty pigtails. Her dad gets up to give her a good morning kiss.
Normal rubs shoulders with unusual, intensive medical with everyday average.
Something that has struck me from our first visit nine years ago to the present day is that every child who is cared for at the house is clearly valued. Kindness seems to be the mother-tongue of the nurses and carers who work here. Daniel is cared for, not just his diagnosis or clinical needs – important as those are. Here his inherent human worth is acknowledged and because of this ethos, the house is a safe place to live (and to die) because the care reflects the worth life is given.
We all hurt at sometime or other, and even if pain is well explained it still hurts anyway. Kiho recognises “the dignity of suffering” (a phrase I read from Eugene Petersen, in “The Message”) and don’t tend to rush in with canned platitudes or quick fix-it suggestions when they see I’m struggling. Sometimes I do talk with the staff there, other times I prefer to use paint to express my sadness. The freedom to do this, to relate or to retreat, means that the sadness doesn’t always win. My ability to cope with it is broadened, and the creative options give a valuable outlet for wordless grief.
I have a room of my own, and I can sleep without the constant interruptions of the machines necessary for Dan’s well-being, something not possible at home. Being rested feels so good! Medications, oxygen levels, ventilator settings, diapers, lifting – the carers take over all these duties for the whole respite week. Cuddling with him however… I do that myself !
Quality education is the only way to ensure more children with a life limiting or life threatening condition receive the holistic support that palliative care provides. Children attended to by a health professional trained in the principles of palliative care will experience a better quality of life, better pain and symptom control and the appropriate care at the time of death. Consider helping children like Daniel accesss palliative care by giving to the ICPCN Christmas Appeal 2016. This project will help fund ICPCN training and education programmes. Click here to donate.
© Touching Rainbows, ICPCN, 2012
ICPCN publication Touching Rainbows can be purchased via the ICPCN website
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