I’ve been awake since the small hours.  I did my online food shop, watched an inspiring video, read some inspiring words.  When it was clear sleep wouldn’t return, words of my own began forming, building, organising themselves into neat little ranks, and I felt a familiar urge: I needed to write.

I crept downstairs, moving as quietly as possible so as not to wake the family, stifling jumps as the dark combined with my tired-wired brain rendered our Halloween decorations much scarier than they are with the lights on.  I began writing on my phone because I couldn’t find my laptop. I put it somewhere safe before we went to Japan a couple of weeks ago. I’ll remember where that somewhere safe is when I’ve had a cuppa.

I had planned to return to the blog with tales from Japan, yet I find myself wanting to write about the reason I’m awake so early instead.  Jet lag could be playing a part (my body still thinks it’s eight hours ahead of where it is), but it was the soft buzz of my phone that nudged me from sleep at 2.22am.  I’ve become attuned to this soft buzz of a notification on my phone during the night time,  because there’s only one notification allowed to disturb me on my phone at night: an alert from my son’s blood glucose monitor, telling me his blood sugar is out of range.

A rude awakening 

Despite my sporadic overthinking tendencies, I’m generally an optimist, and one of the reasons I’m such an optimist is that life has been very kind to me.  I’ve experienced the loss of elderly family members, and not everything goes right all of the time, but not much unexpected has happened, and life has been good enough for me to feel almost charmed sometimes (as well as incredibly grateful).  I can worry about the small details, or the day I’ll never see, but the thing about life’s big challenges, is that you often don’t see them coming in time to worry about them.

For about a month, my son had been drinking loads of water.  He’d lost weight (despite eating voraciously), but ever the optimist, I was sure it was nothing to worry about.  He’d hit puberty hard and growing lads grow up, right? There were a couple of other little niggles though; some white patches on his skin around moles that google said was a benign autoimmune condition called halo nevus, and he was getting up two or three times in the night to pee.  It felt weird enough that me and my husband kept talking about it, and asking other people what they thought, and eventually we made him an appointment to see the GP.  Just in case. 

We spent the rest of that week at the end of September in the hospital with our son learning how to manage his newly diagnosed Type 1 Diabetes (T1D). 

This sucks, but we’re still pretty lucky

So how can I still feel lucky when my son has an autoimmune condition that will require medication and management for the rest of his life?   There are lots of ways:

I feel lucky we caught it early.  The doctors told us that many cases of newly diagnosed T1D come about because a patient ends up in intensive care.  The signs can be difficult to spot, and sometimes the classic symptoms don’t present themselves in enough time to get an early diagnosis.  We were lucky our son had all the textbook signs, and while I still struggled to allow myself to believe it at the time, looking back it’s clear that something was up.

My son is very unlucky to have developed T1D, but it is lucky we live in an area with an amazing T1D healthcare team.  Within a couple of hours he was receiving treatment to bring his incredibly high blood sugar levels down, and we were being visited by an experienced team of consultants, nurses and dieticians who are all dedicated to teaching us everything we need to know to help our son manage his condition and live a long and healthy life. 

I feel lucky my son has taken it all in his stride.  It’s a lot of big changes for a twelve-year-old, whose only biggest worry up until that point was whether he could wrangle another hour playing online with his mates (actually, that’s probably still his biggest worry), and we’re in awe of his attitude and resilience. He was injecting himself with insulin from day two in hospital, and has been ever since.  I know there’ll probably be times when he’s not so resilient (because let’s face it, this sucks, and he’s going to feel angry about it sometimes), but the lad’s got coping skills, and I know he’ll get through it.

I feel lucky that I’m resilient.  You’ve read my words on worry and panic before.  You know that my brain can sometimes take me on fear spirals and unhelpful tangents, yet it seems when I have an actual problem in front of me (not a mind-made problem), I can deal with it.  Don’t get me wrong, we’ve all shed some tears, and I’ve felt incredibly sad for my son at times, but we’ve adjusted pretty quickly to the life he’s leading now.  The mantra that stayed with me during my son’s diagnosis featured in a short post I wrote at the end of the week he was hospitalised: Troubled? Then stay with me, for I am not. Yes, this was a problem, but it wasn’t something we could change.  It was something we could deal with though, and I knew instinctively that I would be the most benefit to my son if I stayed calm and accepting of the situation.  This was the demeanour I presented throughout our hospital stay, and it allowed me to take in all the information we needed and ask all the questions I needed answers to.  I still allowed myself to grieve for the life we thought he’d live up until his diagnosis, and we gave him space to be upset too, because as I said before, it sucks, and acknowledging its suckiness is part of being resilient.

Best laid plans

The week before diagnosis we had booked a family trip to Japan.  My son was diagnosed on 24th September, we left for our trip on 11th October, which gave us just over two weeks to become T1D management experts.  His healthcare team were very encouraging of us going on the trip, telling us we’d be pros at managing it in a couple of weeks and they’d only ever be a phone call away.  True to their word, they regularly monitored his condition while he was away and emailed us with adjustments to his insulin ratios to help keep him in range as often as possible. 

We had an amazing two weeks in Japan (which I will be filling you in on in a series of mini-Japan blog posts, because if I try to write about it all in one go it’ll turn into a novella.)  It was a learning experience for us culturally, and also medically, as we all learned we could do this; we could continue to live happy lives, embracing fantastic opportunities and being the same family we’ve always been, just with a few tweaks to keep my son healthy.

Sleep is probably the biggest sacrifice we’re having to make at the moment.  This morning, I was up in the small hours foraging for some apple juice and glucose tablets.  I gently shook my son awake to take them, he chugged and chewed like a champ and drifted softly back to sleep.  I went back to bed, and sleep might have come, but then the words came, and here we are.  Just weeks ago, I was sure that this level of sleep interruption would drive me insane, but it’s amazing what you can deal with when there’s no other choice.  The better we all get at managing my son’s T1D, the more time he’ll spend in range, and the less rude awakenings we’ll have. 

On being optimistically realistic

Everything that’s happened over the past couple of months has made me realise I’ve had a tendency to use my optimism as a shield at times, preventing me from noticing when there’s a real problem.  I also have a tendency not to want to ‘bother people’ unnecessarily (the GP) or make a ‘fuss over nothing.’  In this instance, if I’d trusted what I could see, I would have made a GP appointment sooner.  But despite my occasional worry about mind-made problems, I can see there was a part of me that refused to believe that bad things could happen to my family. Luckily for us, we were able to take action in time to avert any serious health complications for our son, but it’s raised my awareness of how I respond to problems, and convincing myself there isn’t one when there’s evidence to the contrary just won’t cut it.  Instead, it’s important that I cultivate a healthy awareness of the dangers and risks associated with my son’s condition (and life in general, for that matter).  That doesn’t mean that I scare myself silly with horror stories or dwell on what if’s, but it does mean I need to recognise real risks and manage them appropriately. Real life problems do exist, and you can separate them from mind-made problems because real-life problems require action. 

I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.

Walt Disney

Oh dear, I fear I’m actually becoming a real grown up.  I suppose it’s about time.

Any questions?  I didn’t know too much about Type 1 Diabetes up until a month ago, and much of what I thought I knew was inaccurate and related to Type 2 Diabetes, so if you’ve got any questions ask away, I’ll be happy to answer to the best of my ability.