The Grief that Lives Beside Love

Parenting a Child with a Disability in a World That Doesn’t Always Understand

I’ve talked a lot about grief over the years—both in private and in public—as a parent of children with disabilities. It’s a part of my story that’s shaped me in ways I never expected. But grief can be a tricky thing to talk about, especially when it intersects with disability. It’s easy to be misunderstood, and I’ve grown more careful with my words over time—not because I’m ashamed of the grief, but because I want to be sure I’m never implying that my children, or anyone else with a disability, are something to be grieved.

That’s not what this is about.

Grief, for me, was never about them. It was about the stories I had to let go of. The vision I had of what life would look like. The sense of certainty I once carried that was shattered the moment I realized we were on a different path—one I hadn’t planned for and didn’t yet understand.

When I first heard the word “deafblind,” it felt like a door closing. What I couldn’t see at the time was that another door—wider, more vibrant, and far more meaningful—had just opened.

But before I could walk through it, I had to grieve.

Grief showed up in the in-between spaces—after the house quieted down for the night, in the car ride home from yet another appointment, or during a school meeting where I had to once again explain what my child needed just to access the basics. It didn’t arrive once and leave. It resurfaced over time, shifting in shape. When your child has a progressive condition, grief isn’t a singular experience—it’s a cycle that revisits you. Just when you think you’ve adjusted, something else brings it all back.

It’s in the smallest, most ordinary moments. Like watching my child trip over the dog and suddenly remembering—this isn’t just clumsiness, this is vision loss progressing. It’s in realizing they’ve outgrown another piece of equipment, or that they’re hesitating on a step they once navigated with ease. It hits again, without warning. And sometimes, it breaks me open.

I used to grieve and think, I wish it were me. I would have taken it all on myself if I could. That’s the part that people don’t always see—the depth of love that lives underneath the grief. The desperate longing to trade places, to carry the weight for them, to protect them from what’s coming.

But here's the thing: grief and love are not opposites.They live side by side.

And just because I’ve grieved doesn’t mean I don’t fiercely celebrate my children. I do. Every day. I see their strength, their humor, their brilliance. I see how deeply they love and how much they’ve taught me about what really matters. My life is richer because of them—not in spite of their disabilities, but because of the unique perspectives they bring into the world and the ways they've reshaped me into someone stronger, more compassionate, and more awake.

Still, I think it’s important to tell the truth: many parents of children with disabilities do experience grief. Not because our children are broken—they are not—but because the world around them so often is—full of systems that don’t understand, support, or make space for them. Because we carry fear about what the future might hold. Because the weight of advocacy, of care, of constantly having to explain, educate, and push back against misunderstanding can sometimes feel unbearable.

We grieve for the ease we imagined. For the milestones we thought would come effortlessly. For the friendships our children sometimes miss out on. For the freedom we had before life became a series of appointments and assessments.

That grief doesn’t mean we don’t adore our children. It means we love them enough to feel everything—the sorrow, the rage, the joy, the awe. It means we’re present.

Over the years, I’ve become more aware of how conversations about parental grief can land—especially for adults with disabilities who grew up hearing their existence framed in terms of hardship. I try to speak with care because I value those voices and I’m learning from them. At the same time, I hold space for the truth of my own experience. I believe both can coexist.

It’s not always comfortable. It’s not supposed to be.

But if I’ve learned anything from this journey, it’s that grief doesn’t last forever. It softens. It transforms. It teaches us how to hold joy more fully, how to let go of the story we thought we needed, and how to embrace the beauty of the life we actually have.

There’s a kind of freedom that comes when you stop resisting what is and start finding the wonder in what’s right in front of you.

So yes, I’ve grieved. I’ve grieved more than once. And I will again. But I’ve also laughed harder, loved deeper, and lived more honestly than I ever would have otherwise.

Being a mom to my kids has been my greatest joy. They have made me a person who knows a love so deep it defies explanation. I’ve become someone who walks with confidence, speaks with truth, and lives with authenticity—because of them, not in spite of them.

And for all of that, I am profoundly grateful.