The Grief No One Saw: When My Toddler Was Diagnosed with Type 1 Diabetes

When my baby turned one, I thought we were finally settling into toddlerhood — a rhythm of first steps, first words, and giggles. But at 15 months, everything changed. A diagnosis I never saw coming: Type 1 Diabetes – followed by an ED visit via ambulance and one week in ICU.

My child now had a chronic illness that would require lifelong management — and I had no idea how to process what that meant for them, for me, or for the future we’d imagined.

I was grieving. But no one saw it.

What Is Disenfranchised Grief?

I quickly realised and felt the full experience of disenfranchised grief — grief that isn’t recognised or validated by society. I was mourning the loss of a healthy, carefree childhood for my baby. I was mourning the parenting experience I thought I would have. I was mourning normalcy. I was grappling with the silent emotional, mental and physical labour that no one sees.

The Diagnosis That Shook Our World

On a Monday evening, a phone call to the home doctor, resulted in an ambulance being sent to our home. The paramedics’ words were “Type 1 Diabetes”. My world changed forever, in a moment – and my daughter’s new journey was just beginning.

The signs were there — extreme thirst, frequent urination, sudden weight loss, lethargy, fatigue — but I didn't recognise them (and neither did my Type 1 husband!). Who would? My toddler had not long started daycare. I assumed it was a virus, or teething, or growing pains.

When we arrived at the hospital, we were rushed into the emergency department. Blood sugar levels were dangerously high and my daughter was in severe DKA (Diabetic Ketoacidosis)– then came the crash courses on insulin injections, blood glucose monitoring, carb counting, and emergency protocols – my husband and I were suddenly thrown into emotional freefall.

I went from being a new mum to being a nurse, dietitian, mathematician, and crisis manager — all within 24 hours.

The Grief No One Acknowledged

Everyone around us was focused on how “lucky” we were to catch it early, how “manageable” the condition is today, how “kids are resilient.” And while all of that may be true, none of it made the loss any less real.

What I grieved:

• The spontaneous joy of toddlerhood, now clouded by needles and glucose readings.

• The ability to say “yes” to birthday cake (and any food for that matter) without a mental calculation.

• The invisible freedom of not living on a medical schedule.

• The idea that I could protect my child from pain — gone in an instant.

But because my child didn’t die, because type 1 is treatable, because life saving technology has improved over the years, my grief was unseen — disenfranchised.

If You’re a Parent in This Situation

You are not alone.

You’re allowed to grieve the life you thought your child — and you and your family — would have. You're allowed to cry, to rage, to feel lost. You can be devastated and grateful at the same time.

You don't have to minimize your pain because someone else "has it worse." Your experience is real. Your grief is real.

And it’s okay to name it.

Moving Forward, Carrying Both Grief and Hope

It’s been just over 3 years since my daughter’s diagnosis. The routines are becoming familiar — blood sugar checks, insulin doses, midnight alarms. My child is still laughing, growing, thriving. They are not their illness.

But I am still grieving — not all the time, not as intensely. Just quietly, in the background. And that’s okay.

This is the story I wish I had read when we came home from the hospital. Maybe now, it’s the story someone else needs.

Because not all grief is loud.

And not all losses are visible.

But every parent deserves the right to grieve — even, and especially, when the world tells them they should only feel grateful.