The First Year with T1D: What I Wish I Knew Sooner

When our child was first diagnosed with Type 1 Diabetes, it felt like stepping into an entirely new world. One moment, we were in the hospital learning how to count carbs and give insulin injections; the next, we were back home, staring at our child, inwardly panicking and thinking, “How on earth do we do this every day?”

If you’re reading this as a newly diagnosed parent, let me start by saying: You’ve got this. I know it doesn’t feel like it right now, but one day, you’ll look back and realise how far you’ve come. There are so many things I wish I had known in those first chaotic months, so here’s my attempt at passing on some wisdom.

1. The Numbers Will Drive You Crazy (But Don’t Let Them Win)

At first, I obsessed over blood sugar numbers. A reading of 10 mmol/L felt like a failure, and a low of 3.5 mmol/L sent me into a panic. I wish I’d known that perfect numbers don’t exist- even for people without diabetes! Blood sugars will go up, they’ll go down and some days they won’t make any sense. That’s okay. The goal isn’t perfection; it’s keeping your child safe, healthy and happy.

What helped? I learned to look at trends rather than one-off readings, and I stopped letting one “bad” number ruin my day.

2. Food Isn’t the Enemy (But You Will Become a Walking Carb Calculator)

I used to think we’d have to cut out all the fun foods- birthday cake, ice cream, fish and chips at the side. But here’s the truth: kids with Type 1 can eat anything, as long as insulin is dosed correctly. Yes, you’ll start eyeballing slices of pizza like a mathematician solving an equation, but it gets easier!

What helped? Using a carb-counting app, finding go-to low-carb snacks for those “we’re already high” moments, and keeping a sense of humour when I guessed a meal wrong (because, spoiler alert, you will!).

3. Lean on Your Diabetes Care Team & Other T1D Parents

In the first few weeks after diagnosis, I felt like I had to figure everything out alone. I wish I had realised sooner that we weren’t expected to do this on our own.

Your diabetes care team- your child’s consultant, diabetes nurses, dietitian and GP- are there to support you. Call them. Email them. Ask all the questions, even if you think they’re silly. They’ve seen it all, and they’d much rather you check in than struggle in silence.

And then there are the other parents. No one understands this journey quite like someone who’s already walked it. Whether it’s an in-person support group or an online forum, connecting with other families can make all the difference.

What helped? Talking with friends and connecting with any other T1 parents that they might know. Finding a local Type 1 parent Facebook group or Whatsapp group, joining Breakthrough T1D or Diabetes UK events, and remembering that even the most experienced parents once felt as lost as we did.

4. Sleep is a Luxury, But You Will Adapt

Nighttime lows and highs mean you’ll develop the superpower of waking up seconds before a CGM alarm. You’ll stumble half-asleep into your child’s room to check their sugar, and you’ll perfect the art of treating a low without waking them up (a skill that deserves it’s own award, honestly.)

What helped? A good CGM (if you can get one through the NHS or self-fund), taking turns with a partner or family member when possible, and learning that caffeine is, in fact, your new best friend.

5. At First You get Through the Day…Then a Week…Then a Month

In the early days, I could’t imagine doing this for years. I could barely get through one day without feeling completely overwhelmed. I focused on just getting through today.

Then one day, I realised we had done a full week. Then a month. Then six months, and gradually, without even noticing, it all started to feel a little bit…normal. Not easy, but less terrifying.

Your child will keep growing, learning and adapting- and so will you. What seems impossible today will become second nature. One meal at a time. One blood sugar check at a time. One day at a time.

What helped? Celebrating small wins. The first time I guessed the carbs correctly. The first time my child checked their own BG levels. The first time we had a full night’s sleep. These little victories add up, and they remind you just how far you’ve come.

6. Other People Will Say Annoying Things (Try Not to Scream)

People mean well, but you’ll hear all sort of questionable comments:

• “Did they eat too much sugar?”

• “Will they grow out of it?”

• “Have you tried cinnamon/ keto/ fairy dust?”

It’s frustrating, but I wish I had known not to take it personally. Most people just don’t understand Type 1 Diabetes, and you’ll become an accidental educator.

What helped? Having a go-to response: “Nope, it’s an autoimmune condition. Their pancreas stopped working, but we’re managing it!” Short, sweet and hopefully educational.

7. Your Child is More Resilient Than You Think

This one hit me the hardest. I spent so much time worrying about how T1D would impact their childhood or teenage years, but guess what? My child is thriving. They play sports, laugh, run around, act silly and do everything they did before- just with a few extra steps. Diabetes is a part of their life, but it doesn’t define them.

What helped? Focusing on the wins. The first time they checked their own blood sugar. The first time they told a friend about their diabetes with confidence. The moment they realised they could still have cake at a party. These moments remind you: they are going to be okay.

8. You Deserve Support Too

It’s easy to put all your energy into managing diabetes and forget about yourself. But burnout is real. Check out the Burnout Section on this website for helpful tips, find an online parent group, a Diabetes UK resource or just a friend or partner who listens without judgement. You are not alone in this.

What helped? Letting myself cry when I needed to, leaning on my support system and remembering that even on the toughest days, I was doing my best. And that’s enough.

Final Thoughts

The first year with Type 1 Diabetes is overwhelming, exhausting and emotional. However, it’s also filled with moments of pride, resilience and unexpected joy. One day, you’ll look back and realise how much you’ve learned, how strong your child is and how far you’ve come.

So to the newly diagnosed parent reading this: Take a deep breath. You’re doing amazing. When in doubt- treat the low, drink the coffee and never forget the backup snacks!