"It will be the best summer ever!!!!" my daughter Maddie announced as she bounced out of school on the last day of year 4. She was nine, and full of joy for the summer break. We had great plans, and she was going to make the most of them, because that's the kind of girl she is. That was the summer she was diagnosed with type 1 diabetes.
When a child is diagnosed with type 1 diabetes
Looking back, I missed some signs. We took her to a One Direction concert - something she'd been looking forward to for months - and she couldn't smile because she had so many mouth ulcers. We started having to break on car journeys to find public toilets, and she was asking for more water. Then, after a day at the beach that involved ice cream, doughnuts and jelly, she wet the bed. She was mortified, and I just knew.
Our GP doesn't have the best bedside manner, so when he put his hand on my shoulder and told me "I'm sorry. It's a big diagnosis", I realised that this was going to be life-changing. But I had no idea how much type 1 diabetes would change our lives until a few weeks after we got home from hospital.
Tip 1: Don't beat yourself up about the numbers
I called our clinic daily with pleas for advice, the best snippet being that though we were aiming for a normal blood sugar of 4-7mmol/L we wouldn't hit it very often. I think I relied on those words a lot when erratic levels threatened to make me brand myself a failure. Now we see every number not as judgement, but as information. We deal with each, then we move on.
Tip 2: Diabetes doesn't control you
One thing that didn't change for us was our attitude to life. We've always been a family who loves experience over things, and the most distressing thought for me was that diabetes might restrict Maddie’s natural desire for adventure. So I resolved that however hard it might be, if she wanted to do something, we'd find a way. And so it was that she had her first experience surfing on the day she was discharged from hospital.
I won't lie, I was terrified. I took a huge bag of equipment with me, including a sharps bin! I can laugh at myself now, but at the time I needed to feel prepared. I lectured the instructor on what to look out for, made her check her blood sugar every 10 minutes, and force fed her Jaffa cakes every time she paused. It felt like having a newborn again.
It will get better.
She finished surfing with a blood sugar of 6.5mmol/L and I breathed a sigh of relief. I breathed more sighs when she managed her first hypo, and more as she started injecting herself. We managed a long-haul holiday without drama, and gradually it dawned on me that this would be alright.
Life is good, and we take diabetes with us. Maddie has done sleepovers, 24-hour activity camps and ski trips abroad with school - because I was never going to say no to adventure, or a normal life.
Tip 3: Plan to be spontaneous
I always say that we plan to be spontaneous. It sounds weird, but it absolutely works. We plan ahead, pack spares, then we go out and enjoy ourselves. We've absolutely needed the spares, sometimes in the most ludicrous places (pump change on a ski slope? No problem!) but we've managed. And every time we do, we relax a little bit more.