2 years and counting… reflections of a parent of a T1D son

Its nearly 2 years since we started working on Diabeticsupply.co.uk and pushing 30 months since our son Evan was diagnosed T1D which was the start of our unplanned journey. Every month brings the family a new lesson as we all grow older with his diabetes.

This has made me reflect on the last couple of years and the journey that we have all been on and I thought it would be nice to share some of those ramblings.

Evan has progressed onto Omnipod and Dexcom G6 (via G5) and they have helped him to manage his control well. Every month he takes ownership of his diabetes a little more, without being pushed, and we stand back and watch his incredible resilience and development.

Diabetes has taught the family a lot about each other, and ourselves. There are a million takeaway lessons I have reflected upon which I wish I had been told, or believed, in the first 2 years post diagnosis. So, I thought I would share a few:

  1. You can do your best, to be the best parent helper to your child that you can be (this applies to HBA1C, blood levels, carb counting), but learn to accept that your best may not always live up to where you feel you should be. You’re still awesome even when you aren’t perfect and it’s a marathon not a sprint.
  2. You are not super-parent. Its ok to have a dark moment when you have been up 5 times in the night for hypos, or your mind has worried you awake until 4am. Bad days are just that…. a day. Not a lifetime. Accept them and start again. A step backwards doesn’t mean you have to keep walking in that direction!
  3. Try not to be afraid… I mean there is plenty to make yourself scared of as a parent at the best of times, and diabetes brings a tonne more, but meet it head on. Do things anyway. Go on holiday in a hot climate, go wild camping, go skiing, go on sleepovers, go on week long school trips. It’s terrifying as a parent to let them go, but amazing to see how much they grow in doing so when they get back and you breathe a large sigh of private relief!
  4. Laugh…a lot. I mean it’s the biggest single weapon I have as a parent to keep things positive. Sadness has its place, but laughing is 10 times more powerful than crying. Like the time we drove 300 miles without any injection pens packed for holiday… option 1 argue and cry… option 2 laugh and solve the problem, and spend the next day grovelling for your son’s forgiveness.
  5. Our family saying “Embrace the Chaos” continues to resonate. As parents we like to be in control, but diabetes teaches us that just as you have everything dialled in ….. it all changes. That’s OK just get dialling again.
  6. Tough love is not easy to give. We have been determined to not make diabetes an opportunity for public outpourings of feeling sorry for Evan. We love him, and wish we could change things, but he has to learn to deal with the life he has, not feel sorry for himself. We do that privately as parents.
  7. Share with others. We know it’s not always easy to open up, but sharing your experiences might help educate someone a bit more about your child’s life, might help solve a problem, or it might just make you feel a bit better. Not talking about something doesn’t make it go away, and you’ll never find a positive in a negative if you don’t go looking for it with others.
  8. Don’t forget the whole family. A big one for us. Evan has an older brother and we always try to remember that, while a lot of what we do can get impacted by diabetes, we try for it not to be a negative for siblings. They have enough to argue over already!
  9. co.uk has changed our life and teaches us all as a family “when life gives you lemons make lemonade”. This has been an amazingly valuable lesson to teach both the boys, and it’s about life… not just diabetes. Again it’s easy to write and very hard to always believe, but when you don’t believe it then you have to read the other lessons again and step back for a moment… and think again how awesome your family are.

In writing this I have come to realise that the above lessons apply to us all, and to all aspects in life, it’s not just about diabetes. What diabetes changed for us is that we actually learnt them this time. We were forced to look at ourselves more, both good and bad, make more conscious choices about how to live and how we felt than we had previously needed to.  We engaged with life more directly.

We don’t know life without diabetes any more, and may wish for Evan to not have to deal with it for the rest of his life, but we are grateful for the positive impact it has had on us as a family and human beings, despite all of the tough moments.