I have entered another race - April 27th, a mountain trail ultra - 46 or 47km (noone is quite sure yet) behind the Cote D'Azur. My training is therefore increasing again following the recovery from Barcelona. This past weekend, the Rolfelets, Mrs R and myself flew to Kent to attend a Family Care Weekend organised by Diabetes UK. The event was specifically aimed at families with a child /children with Diabetes, and because of the nature of the condition this was 100% made up of children with Type 1. I thought we would be pretty busy during the weekend, and as we had Friday morning free I ran my weekly long run on the trails and minor roads of Kent, near where I grew up. Whilst the weather was damp and misty, the scenery was most definitely spring like with daffodils and bluebells poking through, lambs frolicking in every field, and rabbits scattering in my path. I glimpsed a badger scurrying back to its burrow a couple of miles from my parents' house. 20 miles covered, a hearty breakfast, and we headed to Ashford for the event.
On arrival we were introduced to the team, and shown around the facilities in small groups with the kids, as well as given an agenda. I was immediately struck by the amount of volunteers that had given up their weekends to help out at the event. There were probably around 20-25 families there with children, perhaps 80-100 attendees if you like with kids ranging from 1 to around 15 years old. The volunteers (did I mention there were loads of them? At a guess I would say 40 volunteers) were all either Type 1, or working as nurses, pediatricians, Dr's, dieticians, and in some cases parents of T1 diabetics. After extensive introductions, the tour and a chat, #1 retired to the hotel room - not feeling very well but certainly a reluctant participant in the weekend given the reason for being there. #2 and #3 settled right in, and made several friends right out of the traps. Chatting in the bar that evening with some other parents of newly diagnosed T1 kids was also fascinating - picking up nuggets such as that when checking the blood sugar level of the Diabetic, to use the word "test" implies pass or fail and increases the constant pressure on the child. #2 is already worried if she has a high reading that we (her parents) are going to be cross. The school nurse has often implied that levels are "good" and "bad" and that is something that we need to address. We now use the phrase "do your glucose / sugars".
Saturday morning began early enough with #2 and #3 eager to get started. #2 had gone to bed with reasonably high sugars - around 16 mmol, probably due to the scone just before bed, but had woken up around 6 mmol we were pretty relaxed. #1 was dosed up with paracetamol and as she had missed dinner the previous evening was absolutely starving hungry, so accompanied us to breakfast. Which was amazing! Full English buffet, fruit, cereal, toast, pastries etc. And all very good quality - not always the case in hotels, but we were all suitably impressed and stoked up for the day. As we looked around the restaurant, nearly everyone was pricking their fingers and accompanied by a copy of Carbs and Cals, flicking through to calculate the appropriate insulin dosage. This was then dialed in to the pump, or discretely injected. #2 rushed through hers without a hint of reticence, and took herself off early to the kids' designated meeting point. The other 2 were not far behind, with the promise of a visit to a Safari Park for the day. Mrs R and I looked after them wistfully, accompanied by the other parents, and then went off to our various conference rooms.
We were split into groups - married couples separated, in order to maximise the information that we would take in, and then rotated around various conference rooms. A diabetic nurse of many years' experience led my first group, and ran through the science of diabetes - in laymans' terms of course. This was extremely useful as it helped me to understand how management of the condition will change throughout #2's life - through puberty, into adulthood, when she is sick and so on. So often in Monaco medical professionals and the school nurses have talked about the stabilisation of #2's condition. Type 1 diabetes is not something that can be stabilised - the diabetic either has good control or not, but there will be bad days for whatever reason. It is far more art than science.
In this first seminar, there were tears, and quite a few of them. I thought I would be one of the newest there in terms of diagnosis, but some had been diagnosed as recently as February and it was still very raw. I have compared my reaction to #2's diagnosis to that of bereavement, and that was underlined in this first meeting. I was most definitely not alone. I am conscious that I (and #2 and Mrs R) have been through some of the five stages of bereavement - denial, anger, bargaining, depression and acceptance. A T1 diagnosis is strange because it needs immediate management from day 1, but all the while the brain is processing the other stages. #2, Mrs R and I are much closer to acceptance that we were, particularly after the weekend.
The sense of bereavement was reinforced to me when everyone was running through their diagnosis story. They were all strangely familiar, although some children were much more sick with DKA than #2 on admittance to hospital. Diabetic ketoacidosis (DKA) is a potentially life threatening illness that occurs when the body cannot absorb glucose and convert it to energy. Before diagnosis, the body is producing less or no insulin, and therefore the blood sugar levels rise because the sugar just goes round and round in the blood. Extra fluids are required by the body in order to try and get rid of these sugars - hence the thirst. At the same time, the body needs energy so needs to convert existing reserves into energy - this is why prediagnosed diabetics lose weight. As a by product of this process, Ketones are produced, but in turn these Ketones build up to toxic levels and cause DKA. Not only are the parents faced with a couple of weeks of intensive care, but then they leave hospital with a T1 diagnosis - for life.
It was also nice to hear that other parents were struggling with controlling blood sugars too - a lot of this could be pinpointed to the "honeymoon period" - the diabetic continues to produce, sporadically, insulin as all the beta islet cells in the pancreas do not die immediately or in a linear way. Hence #2,. Mrs R and I think we have got it nailed after 2 or 3 good days, and all of a sudden #2's levels will be all over the place for absolutely no reason. This "honeymoon" period can apparently last a year or 2. Joy.
There was not a dry eye in the house - I was brought back to #2's diagnosis and how I would far rather it was me than her.
Discussion group 3 was with a dietician - again something that UK T1 diabetics are offered as part of the post diagnosis process, and again it was fabulously useful - explaining in laymans' terms Low GI and High GI and how this might work with glucose levels, as well as a group discussion and sharing of experiences about insulin delivery, timings, the value of charts, and so on.
The fourth discussion group was led by 2 parents - 1 who was actually T1 and had been for over 30 years, and the other a parent of a child with T1. Again, without breaking the confidentiality requirements, this was a fascinating insight into life with #2 and for #2. The teenage years are not necessarily something to be embraced, but it seems as though people get through it despite going through rebellious phases and apparent refusal to treat their condition. A supportive parent is all I can be - I just hope I remember that when all hell is breaking loose.
Throughout the weekend there were other discussions and presentations, interspersed with chats with other parents and kids. One area that I found very useful as well was the effect of #2's diagnosis on #1 & #3. #1 had already been showing signs of rebellion and perhaps hurt by her initial refusal to participate. There was a very tearful presentation of sentiment from the non - diabetic kids who had been asked to anonymously express their feelings about diabetes and their sibling. There was the usual and expected feeling of neglect in favour of the diabetic, but I was not expecting the amazingly detailed knowledge of the condition as well as sympathy for the sibling and parents.
The kids had a great time out - of course in complete safety due to the level of diabetic knowledge out there (medical professionals and T1 diabetics) with them at all times - carbs had been calculated and insulin administered. I got the sense that this was the first break that some parents had had from their kids since diagnosis. I took #2 and #3 for a swim, and Mrs R took #1 off to Sainsbury's for some mother daughter bonding, which I sensed went extremely well and paid immediate dividends, even if it hadn't been my first choice of bonding venue. #2 had a great time with a new friend in the pool, and I spent my time with #3 doing somersaults and hand stands. It was important to take a step back, breathe and immediately put into action something I had learnt on the weekend, and went well.
The kids had a disco that night - supervised and no parents allowed, and the parents were able to decompress and have a quiet dinner together - something I don't recall us doing since pre diagnosis, and very worthwhile.
One of the sessions that stuck in my mind was on the Sunday morning when we were presented with a panel of T1 diabetics for a Q&A. One of the panel had been T1 for over 20 years, and commented that having attended the family weekends, enjoyed volunteering as an adult because even now it normalized the condition - albeit briefly. I believe this was keenly felt by #2, as she cried on departure for hours, perhaps contributing to her quite severe hyper (19.9) on the way home which we treated using our new found knowledge from the weekend (2 hour correction doses and testing for Ketones).
The last seminar was a presentation and discussion about the future for T1 diabetes. I was extremely interested to hear that research funded by Diabetes UK had led to the introduction of the pen injector - a significant improvement on the traditional syringe. Diabetes UK is also funding research into a cure for diabetes, although it is generally felt that we are much more than 10 years away from that.
We arrived home at 1am, and with school and work this morning, I was expecting fireworks and more tears this morning. However, there seems to be a spring in everyone's step having shed many a tear over the weekend. Not so much the elation of finishing a marathon, but a step closer to acceptance of life, a touch more confidence in managing the condition and family life now that it is inextricably linked to the condition, and hope for the future.