I recently attend the tour by Professor Brian Cox in Glasgow – the Universe is quite huge folks! Attending the show was tied up in my search for meaning, making sense of this life and questioning my core beliefs – brought about by rapid periods of growth and change for both me and my boy. He’s 16 now. For anyone out there with a 16 year old son, I bow to you too my friend. So the maths are – 12 years of living with type 1 diabetes, he has had over 17,457 injections of insulin approx. and you can add double that for finger prick capillary blood test samples too. What a way to appreciate how fragile we are? How precious health is and how wonderful it is to have the treatment (for free) to help stay alive.
However, what I have come to love about this period of parenting an adolescent with type 1 diabetes is the space for (just as huge and important as the galaxies) learning and growing together. The subtleties of giving “space” and letting go of previous demands, language styles, expectations and to just let things be.
Does he meet NICE criteria/guidelines which state a healthy marker for overall blood glucose? NO.
Is he learning, growing, dealing with fears and avoiding living his life by this judgement? YES.
Is it a worry for me? Of course it is folks. But on some level, the worry has a flip side. I see him maturing. Slowly. Bit-by-bit. The emergence of who he wants to be, with me very often in the sideline attempting to set temporary basal rates and vocalizing concerns in a non-critical way.
For years, as a parent of child with type 1 diabetes I followed groups on Twitter, Facebook and Forums to help me as a parent. I still have connections with this community, but I notice that I lean on that support network less frequently. I don’t share or post as much information, as somewhere along the way my confidence grew and developed insipidly. I owe so much to the conversations in the small hours of the night when I lay awake, fearing hypoglycaemia, fearing my child waking in the morning and fearing my own fate.
I’m now half way through the first year of my PhD and I truly feel that I’m doing what I love. I read and write most days and tackle some enormous questions that I’m not sure will be answered in my son’s lifetime. However, I do see great change happening. Changes to technology, including improved skin adhesion compounds for CGM’s which was an important theme mentioned during my Masters of research. Adolescents sometimes reverted to pen injection therapy from previously having pumps & CGMs due to this issue. For some, it became so painful.
Smalls steps for man, make a huge difference to people’s lives.
Technology need not always be about answering the stellar issues, the galactic problems, or the astronomical challenges which science is tackling and facing. Sometimes, it’s the small changes. Sometimes, at family level, it’s learning to ask questions in a way that inspire a person to think for themselves (see Socratic method). Other times, it could be a 10 minute meditation, or getting on the yoga mat to deal with the burnout. The tiredness. Physiologically feeling so exhausted after a round of testing glucose levels through the night – possibly due to a failed cannula / site insertion?
Dark matter, according to Prof Brian Cox is matter that is missing, the unseen – the space in between galaxies. In alignment with burnout – it is the unseen, the anxiety, the tiredness, the worry and stresses of trying to figure out ways to conquer, treat and salve all the issues that we deal with daily – when blood glucose rises and drops – as parents and teens. Prof Brian Cox quotes Richard P. Feynman on his tour – a wonderfully, funny and inspiring physicist who said:
For a successful technology, reality must take precedence over public relations, for Nature cannot be fooled.
Nature cannot be fooled. Again, how many times has technology tried to help our lives improve – and it does. No question about that! But with immaturity, some of technologies add burden. This “taking and giving”, “to-ing and fro-ing” of assistance and harm/hindrance can affect our experiences. I know that many adolescents in my research mentioned frustration, too much to think about all the time, and too many things to plan ahead for. Not to mention too much kit to carry around all the time and it becomes to visible for them at times in their lives when social peer groups, and unwarranted questioning becomes more than an annoyance. It becomes something to distance yourself from – creating isolation at times.
A New Horizon
There is much to learn, and the continuum of research, science and manufacturing is gladly growing. The advent of a new insulin pump by Tandem Diabetes, which promotes it’s interoperability and customizability – allowing for the door to be opened to more person-centred and patient choice led insulin replacement and management functionality. This is HUGE! This is certainly a way forward for treatment, and the potential for greater adoption is happening. As far as this becoming available to all – that is another area of dark matter. The space in between! But we’re all aware of it, and we can use our power, our human experience and our research to keep forging this new land of hope.
“Equipped with his five senses man explores the universe around him and calls the adventure Science” – Edwin Powell Hubble