It’s been a long time since I’ve written a blog post. My last post was in June 2024, and it feels like I’ve lived forty lifetimes since then. So much has happened and is happening on a macro and micro level. From this country seeing some of its most challenging times when it comes to supporting disabled populations and their caregivers, to planning my son’s upcoming surgery. I am not ready for it all but here it comes barreling towards me, unrelenting. Some days I wake up optimistic and full of energy and others I don’t know how I am going to make it through the day. Either way, time still passes, and I am still here, weathering more than I knew I could ever weather.

But as a caregiver, time passes differently for me and my family than other families we are surrounded by. I don’t have the luxury of a renewed sense of freedom as my disabled child ages out of toddlerhood and into later elementary school years and beyond. I still wake up with the monitor by my bed and a child to feed, dress, entertain, and keep alive. Meanwhile other parent’s kids get up and watch morning cartoons and eat cereal until they are ready to rise and start the day with the list of fun activities and events that have been planned, or that they have been invited to. On the slow weekends, maybe they have home projects or errands to run. But it’s easy now because they send their kids outside to play, or upstairs to entertain themselves, or the kids simply hang out while their parents get stuff done.

This shift, from families being worn-out from caring for their young children to being more independent is huge. It opens up a world of possibilities. They can sleep in late, go out more frequently on dates and with other friends. They can attend events later into the evening without worrying about how their children will behave. Through this shift, I have noticed one thing between me and these families. Distance.

At this point I can’t even tell you who has pulled away, me or them, but it feels like “our lives vs. their lives” is more prominent than ever. Our lifestyles no longer align like they once did. Playgrounds and library Storytimes are no longer meeting spots, and the general anguish of sleepless nights and shared exhaustion are no longer their reality. We can’t relate.

They’ve simply moved on to their new phase of life while I continue to navigate the same level of care I always have. They have moved on to vacations with friends, late night fun, and spontaneity that my family can’t achieve. Sitting in the middle of the living room while the kids scream around us is a nuisance when it’s not everyone’s kid doing it. Stopping mid-sentence and chasing your kid around to keep them from getting into trouble is not a problem for the mom friends that I once held in solidarity.

I didn’ t write this blog to complain about my child or the care I have to give him. I write this to show you how isolated and lonely it gets when our lives diverge and the number of people I can relate to in my inner circle thins out to zero and I am left needing to find new friends or not bothering at all. Sure, I can still meet my friends for lunch and go for a walk with them while the kids are in school, but when the weekend rolls around and I think about reaching out to make a plan, I hesitate. I stop. Then I think, is this my fault? Have I created this scenario in my head in which we are excluded? But then I remember, it is simply that much harder for us to make that reach. The weight of planning for visitors is heavier than most. The weight of asking for accommodations in plans is anxiety-inducing and sometimes it’s just easier not to. It’s easier to isolate than it is to fight to be included. Because sometimes being included still doesn’t feel like belonging. Because as it turns out, belonging takes effort on the part of others, and I can’t force that.