“Why not someone else? It’s Christmas!” – by Ben Rolfe
“Why me?” Alice demanded, clenching the bed sheets in her fists.
“Why not someone else? It’s Christmas!”
It was Monday, 23 December 2013.
Hot tears streaked her blotchy face as the doctor thoughtfully let my 11-year-old daughter vent her anger and frustration, before launching into an explanation of the mechanics of Type 1 diabetes, and how to deal with it.
Life would never be the same again, not for my wife and I as her parents, but particularly not for Alice. The previous Friday we had drawn a line under a difficult year in our adopted home in the south of France, battled storms and traffic to first fly from Nice to Luton, rent a car and then drive to Yorkshire for the 11am wedding of my sister-in-law. With the wedding out of the way, we could now relax with a little holiday and family time over Christmas, eating and drinking our way around the North East as we visited relatives. Not any more.
Alice had shown classic Type 1 diabetes signs in the last three months of the year – insatiable thirst, peeing a lot, craving for sugar and tremendous weight loss – but had remained undiagnosed despite multiple trips to the paediatrician, her symptoms put down to unseasonable heat for the time of year, impending growth spurts, or hormones. It was only when she and her two sisters tried their grandfather’s finger prick test that our suspicions were properly aroused. Everyone else was around 5, Alice was “HIGH”. A couple of hours later and there we were, at the York District Hospital, with life-changing news.
The rest of the holidays passed in a blur, filled with the early stages of the grieving process. Alice’s diagnosis kick-started what I can only describe as like a mourning, perhaps for her pancreas or loss of her carefree childhood. One positive was that a great friend of mine from childhood had Type 1 diabetes, and he put me on to Diabetes UK. Very quickly we were availing ourselves of all the available resources they could offer, advice (and sometimes counselling) on the end of a phone or email, web-based resources adding to my knowledge, a youth forum for Alice to interact with others. In April of 2014 we attended a family weekend which was terrific for Alice to surround herself with others with the condition, both children and adults, but also for us her parents to see that we weren’t alone in what we were going through. Alice attended the summer camp that year, and loved it so much she is due to attend another in a couple of weeks’ time.
For my own part, I had discovered running, and specifically endurance trail running, about 10 years previously as a way to deal with my own health issues and stress. I was determined to show Alice that with enough determination anything was possible. I set myself a challenge to run a 130km Ultra Marathon over mountains from a ski resort in Italy to the sea. But in order to really make it hard, I decided to run the 100km to the start as well. Over the mountains. Did I make it? You can read for yourself in my book “Running High, Running Low, Running Long”.
Since Alice’s diagnosis we have had two Christmases, and are approaching a third, always marked by Alice’s “Diaversary” a couple of days before. As we are expats, we more often than not travel at Christmas to see family or meet half-way, which is a challenge in itself (how many pump changes do you think we’ll need in four days? What if one breaks? Spare checkers, ketone strips etc). Last year we met up with my side of the family at an activity centre to celebrate my mother’s 70th birthday and Christmas at the same time. We are determined (and so is she) that Alice should live a completely normal life and be in no way disadvantaged by diabetes, so she swam, did archery lessons and the zip lining with everyone else.
However, Christmas holidays are marked by a period of odd meal times and “non standard” food at best, and completely pigging out on chocolate and puddings at worst. Whilst the other kids run around care free, Alice always had one eye on her levels which become very difficult to predict, marked by hypos in the morning and high blood sugar in the night. We are gradually getting the hang of the “holiday dynamic”, and have actually changed the time by a couple of hours on the pump to better reflect the times she has been getting up (a lot later than during term time), the times we have been eating at, as well as tweaking basal and bolus rates to take account of cooked breakfasts and three course lunches. It’s never plain sailing, but is getting easier as we become more experienced.