There are days I feel completely and utterly alone.
Not because I don’t have people around me. I do. Friends, family, professionals. But still, the loneliness finds its way in. It settles in the quiet moments after the noise has stopped, or in the chaos when I’m stretched too thin. It comes not from the absence of others but from the weight of carrying something that few truly understand.
Raising a child with complex needs is beautiful, but it is also isolating in ways I never expected.
Some days, I feel like I’m on the outside looking in. Watching other families move through life so easily, birthday parties, play dates, school drop-offs, things that might seem small but feel enormous when your child doesn’t fit into those boxes. I sit at a distance, wondering if we’ll ever be able to participate like that, or if this sense of “otherness” will follow us forever.
People try to be kind, and many truly mean well. But unless they’ve lived it, the therapies, the meltdowns, the planning, the exhaustion, the fear, they can’t fully understand. They don’t see how even small things require immense effort. How a simple outing can become a battlefield of noise, judgment, and overstimulation. They don’t see the mental checklist constantly running in your mind, the subtle scan of every room for triggers, exits, safe corners.
And it’s not just about being misunderstood, it’s the constant emotional load. The guilt. The fear. The wondering if you’re doing enough. The comparing, though you try not to. The aching when milestones are missed, and the heartbreak when your child is struggling but can’t tell you why.
You smile through it. You become strong because you have to be. But some days, you just want to let it all fall apart for a minute. You want someone to sit with you, not to fix it, not to give advice but to say, “This is hard, and it’s okay that it’s hard.”
Some days I feel lost. I forget what I used to enjoy. I forget how to relax. I scroll past pictures of other people’s lives and wonder if I’ve vanished from my own. Who am I, outside of this constant role of advocate, carer, interpreter, protector? I love my daughter more than words will ever express, but sometimes, I miss myself.
And then there’s the loneliness that comes from silence. From the words that don’t come easily. The conversations you long to have with your child, the ones you imagine before you become a parent. Some of those conversations may never happen the way I pictured them. And that loss quiet, invisible, hurts in its own unique way.
But even in this loneliness, there are glimmers.
A look. A laugh. A small moment of connection that no one else would notice but means the world to me. A breakthrough after weeks of trying. A peaceful evening where she’s calm and content and I can just breathe. A reminder that I’m not truly alone, because she’s here, and she’s mine, and we’re doing this together.
If you’re a parent walking a similar path, I want you to know it’s okay to feel this way. You’re not weak for being tired. You’re not selfish for wanting space. You’re not failing for having moments of doubt. You’re human. And parenting a child with additional needs doesn’t make you superhuman, it makes you someone who loves deeply, gives constantly, and sometimes just needs to be held in return.
I don’t have all the answers. I still feel lost some days. But I’m learning to find beauty in the in-between moments. To forgive myself. To reach out when I can. To rest when I need to. To remind myself that even in the loneliest parts of this journey, love is what ties it all together.
And love, however complicated, however exhausting is never lonely.
