Category Archives: Chronic Disease Management

To The Mama of the Chronically Sick Child Starting School

To The Mama of the Chronically Sick Child Starting School

Dear Mama,

The day you have dreaded for years has arrived. Today, you feel you are relinquishing a piece of the hardest yet most important job you have ever done.


From the moment you heard those heart-crushing words of diagnosis, how you saw the world was forever changed. Your mama-bear instincts were heightened in a way few others understand. And, even years out, this day made you feel sick.


Since that moment, advocating for the additional needs of your child has been your life’s purpose. Today, as you wave them through the school gates, you have to place part of the complicated role of keeping your child healthy into someone else’s hands.



I don’t entirely know how you feel—the experience of living with chronic illness, as I do, is surely different to being the parent of a chronically ill child. Yet, what I do know is that this milestone, and the significance of it, is one of the reasons you grieved when you learned of the challenges your child would face. You worried that they would miss out on the ‘normal’ moments. Thanks to your hard work, they are about to experience one of the biggest. In their eyes, they are like every other child walking through the doors of their first classroom.


For your child, school won’t only be a place for academic education. Along with the wonderful and challenging experiences they’ll share with their peers, school will teach your child how to apply and adapt the health challenges they face to the real world. At school, they will learn the unique skills they need to thrive.


In time school will teach your child how to carefully juggle the delicate balance of their health needs and their commitments: How to advocate for their needs and how to accept and work around their personal limits. They’ll learn how to get school work done in doctors’ waiting rooms, and how to revise for tests in conjunction with treatments and medication doses. Skills that will serve them as they grow and gain more independance.


School will gift them the social circles that won’t only be fellow adventure seekers, but people who build their strength and spirit to help them get through the tough times. They will find the friends who sit with them in the sick bay, bring school work home for them when they can’t go in, and send hand-drawn cards to the hospital.


The goals and interests they develop won’t only shape their identity but help build resilience, teaching them to see their life beyond their health. In time, these things will be the inspiration to work hard to stay healthy and keep up with their peers.


And, yes, their school days will come with the sometimes painful realisation that they are different in ways they don’t always feel comfortable with. It won’t be easy, but they will learn the life strategies that allow them to cope.


I don’t have to tell you this, but there will be mistakes and experiences you wish they didn’t have to have. Yes, even ones that will mean they have setbacks with their health: missed medication doses; exposure to places and situations that put their health at risk; injuries and illness you know could have been prevented; and people who don’t understand, or say unkind things.


When you live with a chronic condition every minute of every day, you can’t escape these things. But with your support, your child’s education will also include how to deal with these events, how to choose differently next time, and that it is ok when things are not always ok. Instead of showing them how to be afraid, show them how to overcome and trust their own judgment. How they learn to do this might not be how you would prefer it, but that’s ok too—you taught them to be independent and strong.


Today will be the first of many anxious days where you have to trust that your child will be ok. It is far easier said than done, but don’t allow your fear to steal the joy. Fear is the greatest thief of all things good, including savoring the rewards of your hard work—yours and theirs. Instead, believe in them, even if you have to fake it until you make it.


Most of all, I want to remind you of the most important thing: We don’t work hard on health so we can live a bubble-wrapped life. We work hard on health so we can enjoy the magic moments. Everything you have done up to this point in your child’s life has been for this: not for them just to be alive, but for them to live. As fully and completely as possible. This moment is living.


So, dear Mama, take a breath, stand back, and instead of wishing it were different, try (if you can) to enjoy this moment for what it is—your precious child’s first day at school! And celebrate it, because together you made it!


With love and admiration,


The young(ish) adult who thrived at school—despite chronic illness.



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