Becoming a Medical Mum: What Nobody Tells You

Nobody plans to become a medical mum. You don't apply for the job. One day you're a parent, and the next you're learning medication names you can't pronounce, reading pump manuals at midnight and knowing your way around hospital corridors better than your local shops.

That was me when Lloyd was diagnosed with IQSEC2 associated neurodevelopmental disorder. Here's what I wish someone had told me back then.

You will learn things you never wanted to know

Seizure plans. Feed rates. How to flush a tube, read a sats monitor and explain your child's history to a new doctor in under a minute. It feels impossible at first. Then one day you realise you're the one teaching the new nurse.

You become the expert on your child

Specialists know conditions. You know your child. You know the cry that means pain and the look that means a seizure is coming. Trust that knowledge, and say it out loud in appointments. It matters.

The admin is its own job

Appointments, reports, NDIS reviews, equipment quotes, school meetings. Being a medical mum often means being a case manager too. A shared calendar, one folder for every report and a short summary of your child's history you can hand to anyone will save you hours.

Grief and joy sit side by side

You can grieve the life you pictured and still love the life you have. Both are allowed, sometimes in the same hour. Lloyd is funny and sweet, and he loves ACDC and chrome bumper cars. Our life looks different. It is still full of joy.

The small things are not small

When your days are full of medical tasks, anything that takes friction away matters. That's why I started RareWear. Clothes that open where the tube is, zip over AFOs and change quickly give you back minutes and your child back some dignity.

Find your people

Other medical mums get it without explanation. Whether it's a support group, an online community or one friend who has been there, find them. You were never meant to do this alone.

If you're new to this world: you're doing better than you think.

Maya, RareWear founder and Lloyd's mum