The Loneliness of Parenting a Child With a Disability

It’s interesting to think about the trajectory of life, and how different your circle looks from your graduation, your wedding day, through an infertility battle, the birth of a baby, during a NICU stay, and then when your child is diagnosed with a disability.

Life full of celebration and happiness looks a whole lot different from when life gets real and you need support. Where there is struggle, there are people that don’t know how to interact with a person who is experiencing or has experienced trauma. Avoidance is human nature, and it just so happens that avoidance is most prevalent when the humans on the receiving end need love the most. I’m sure I’ve been one of those people at some point, hiding on the sidelines while someone in my life has needed the comfort I was too afraid to provide or didn’t even know was needed.

It’s not until you go through trauma, until you almost lose everything and look around to see no one next to you that you truly can say, “Oh, this is what true loneliness is.”

When our son was born at 28 weeks and was immediately whisked off to the NICU, our life changed in so many ways. As new parents, some of these were obvious – we knew there would be no more date nights on a whim, our late nights would turn into early mornings, and our house probably wouldn’t be the most popular spot for our friends to hang out anymore. All of these are things that parents-to-be prepare for. Babies change things…

But, first, we were the parents without a baby.

There weren’t any balloons, confetti, gifts or excited visitors. There was just us two and an empty nursery. I quickly learned the hesitation that surrounds something that isn’t a “sure thing.” No one wants to congratulate or celebrate, they don’t ask questions, they just silently wonder how long it will take for you to break. Plus, without a baby at home to take care of, it was assumed that there was no way to help; but with all of the time we spent going back and forth to the hospital, the housework piled up around us, our takeout bills were astronomical, and I reached peak exhaustion. With this burnout came an inability to be the friend to initiate conversations, to ask, “How are you?” and, by nature, the circle of people surrounding us dwindled.

With our baby under the care of doctors and nurses around the clock, very few understood why things had changed for us, even with some mentions of our NICU stay being a vacation and my motherhood not being “real.” We were the parents without a baby – he was alive, but not at home, and most people didn’t quite know what to do with that.

We evolved into parents of a “fragile baby.”

After our son was discharged from the NICU, we had a full nursery – and very full hands with all of his appointments and after-care – but our empty house ironically spoke the loudest. By the time our family was whole, our newborn was no longer “new,” and the novelty had mostly worn off, even though that was the time we needed support the most. We had expressed the importance of caution and set reasonable boundaries around our immunocompromised baby but hoped that wouldn’t deter people from embracing our family with open arms.

Our days, however, were mostly spent alone. Invitations to events and gatherings were minimal, as we were the parents who “kept their baby in a bubble.” We appreciated the ones that did come that much more, even the ones we had to decline due to strict schedules, inaccessibility, or impossibility. We were thrown into a world that wasn’t typical and was, therefore, unrelatable and not understood.

Visits weren’t common, but that made us even more grateful for the ones that reached out and the most thankful for the three of us.

Now, we’re the parents of a child with disabilities.

A lot of our days look the same, spent inside the same four walls. Being amidst a global pandemic during the time of COVID-19 hasn’t changed that much for us, aside from growing our fears of germs that could devastate our child. Our schedules are packed with therapies, specialists, and everything in between. Preschool should have started in September but remote learning was not an option for our family, so I homeschool throughout my workday. We’ll try to re-enroll next year. We’ll survive and have gratitude for the moments that would have otherwise been missed.

The world around us is busy, and we are busy, too, but we’re usually lost in the chaos. In the “global competition of busyness,” we lose because:

Our busy isn’t noticed.

Our busy is isolating.

Our “busy” feels like it doesn’t count in the eyes of others. It’s not baseball games, school awards and playdates, it’s like muscle stretches, occupational therapy and feeding practice.

But, we’re not here to compete. That’s OK.

Our world is lonely, and it’s mostly unseen, but we are resilient.

There are people in life that take the time to see you, though, and those friends are amazingly invaluable. They’re the ones that go out of their way to bring you coffee because you “deserve it,” who visit on the holidays because they want to be a part of your “normalcy,” and who drop by unannounced just to give you the (masked) hug you so desperately needed. They’re the ones who know what’s going on in your life, ask you about the important appointments you dread, and who listen to you go on and on about how you’re “trying this new thing in physical therapy” or how you think it’s “so interesting that this bodily system affects this other part of the body in this way.”

Our circle had changed in the trajectory of life, but the ones who stay mean everything. They’re irreplaceable and are worth so much more than those who come and go or don’t see the beauty in a world that is technicolor instead of black and white.