My younger son Tom became a teenager today. I think he’s had a great birthday so far in spite of the odd hypo, and as I type this he’s up to his elbows in Lego, building a massive Marvel superhero set that he got from a doting relative.
In amongst the frenzied tearing open of presents, the cards, the cake, and the general excitement whenever Tom has a birthday, Jacqui and I find ourselves thinking about how lucky we are that he’s still around to enjoy it. I’ve blogged about this before (‘Happy Birthday, Diabetes’), but back in 2000, before he was even 2, it took so long to correctly diagnose his diabetes that he ended up in a paediatric intensive care unit and only came through the whole thing by the skin of his teeth.
Every time he gets another year older and another year bigger, we feel so glad that he’s had the chance to do so. When I think about it, it’s hard to believe that skinny little bag of bones that was hooked up to a life support machine by multiple lines and wires, not to mention the breathing tube stuck down his throat, could have grown into a handsome teenager with a delightfully quirky personality.
He had an extremely specific request for his cake this year, asking for a black forest gateau made to look exactly like the ones that appear in the video game Portal. He supplied Jacqui with a number of pictures of it which he’d printed out, to make sure she got it just right. We bought him a camcorder for his birthday, as he’s started making bizarre, often hilarious films which he posts on YouTube. If you want to get a feel of how kooky he is, check out his channel.
Of course, in order to grow from the bag of bones to the teenage art house auteur we have today, he’s had to put up with an awful lot – countless injections and finger prick tests, hypos and hyperglycaemia, visits to clinic, and the occasional scary moment where an illness has sent his blood sugars doolally and he’s ended up in hospital. Jacqui and I have worked so hard to keep him healthy, learning as much as we can about type 1 diabetes and teaching him about how to manage his condition, not to mention the injections, infusion set changes, and blood sugar testing through the day and night. Of course, we’ve all had help from a lot of medical equipment, starting with mixed insulins and blood glucose monitors that took about 20 seconds to show a result, progressing through multiple daily injections, and finishing up today with a funky insulin pump and a continuous glucose monitoring system.
The effort we put in is massive and separates us from all the people we know who don’t have diabetes in their lives, because however sympathetic they are they can never truly understand how all-consuming it can be. But it’s worth all the energy we put into it, because keeping his blood sugars under control, and holding them within that tiny, demanding band between 4 and 7 mmol/L not only keeps him healthy today, but will also help to stave off the dreaded long term complications. We want to see him grow and change birthday by birthday so we can enjoy his glorious individuality for the foreseeable future.
Having said that, I imagine his blood sugars might go a bit bonkers when he’s stuffed his face with a couple of slices of that immensely rich black forest gateau – but after all, birthdays only come around once a year.