By Esther Baxter
No one tells you about the grief.
I’m not grieving my son, no. That’s not what this is.
My psychologist once told me:
“Your child is whole, wonderful, and exactly who they are meant to be.”
No, this isn’t the grief that comes with losing someone.
This grief comes from something else entirely.
It’s the grief for the world I thought my son would have. The one I assumed was built for him, that he would fit into seamlessly, just as it is for every other child.
I grieve when I see playgrounds that aren’t accessible. I grieve when other children move through the world effortlessly while he faces obstacles at every turn. I grieve when children younger than him reach milestones he is still working towards. I grieve when appointments fill our calendar instead of playdates, when milestones are measured in therapy goals rather than carefree moments of childhood.
And then comes the guilt.
The guilt that creeps in like a burglar in the night and whispers, Am I doing enough?
The guilt that tells me maybe I should have fought harder, researched more, pushed back against every dismissive doctor, NDIS coordinator, or stranger who just doesn’t “get it”.
Text books and higher learning can only get you so far, and nothing really accounts for lived experience.
The guilt that seeps into my bones, soaking them like thirsty drought stricken earth.
Every day.
More so, on the days when I’m just too tired to be an advocate, a caregiver, a constant source of strength.
Of being everything, and everyone in every. single. moment.
But here’s the truth no one says enough, and maybe I need to hear it more than you do right now, but here it is:
This grief and guilt do not mean you love your child any less.
They do not make you a bad parent. They are not signs of weakness.
They are the echoes of a system that was never built to include disabled children and their families.
They are the weight of a society that places the burden on us instead of changing itself to be more accessible, more inclusive, more just.
It is the unspoken competition between parents of whose child is learning faster, learning better. Of whose child IS better, because any child outside the scope of developmentally and physically “normal” is considered less than. Is pitied. Is scorned.
I’m still learning to navigate this world that is filled with grief and guilt. It’s also filled with love, and passion and drive. It is my love that drives me to build a world that fits my child, even if I have to do it brick by brick, while digging out the clay by my fingernails. My child is not broken, the world is.
And maybe, just maybe, that’s the grief we should be talking about.
© 2025 Esther Baxter
