For my fortieth birthday, I rode the Ferris wheel at the Santa Monica Pier. The sun setting over the ocean cast a pink glow across beachgoers strolling along the sand. Holiday music echoed from the speakers along the boardwalk below. And next to me, my spouse leaned too far over the edge of our plastic seat, almost dropped his phone, and yelped like a child. I popped the collar on my leather jacket and laughed. Perfection.
To be fair, a Courtyard Inn in my own town with a waffle maker at the breakfast buffet would have felt just as magical. So would a day trip in the car with gas station snacks and whatever music I wanted on the radio. Any of it would have done the trick if it involved adult me with my spouse alone for more than two hours. Because, in the ten years since our oldest son Charlie was born we have not spent more than two nights away. In fact, I can count on one hand the nights we have slept apart from Charlie.
At first it was too complicated. Charlie was born with a rare genetic condition that required a tracheotomy for him to breathe and a g-tube for him to eat. He also slept with an oxygen and heart rate monitor wrapped around his impossibly tiny foot. I barely trusted myself to meet his needs, much less an outsider unfamiliar with his quirks and signals.
But then around age two, he outgrew the need for the trach and the g-tube and was thriving. His cerebral palsy diagnosis allowed him to receive therapies and adaptive equipment he had not previously had access to and so we went all in with a speaking device, stander, gait trainer and wheelchair. While it would have been fine to leave him, I just didn’t want to. I wanted to be in the mix. He communicated with me the best. He ate for me. He slept well for me. We dug each other and I loved it.
Time passes in strange ways while you are parenting. Weeks slipped into seasons, which slipped into years, and suddenly, Charlie was ten and I looked at my spouse over the chaos of our three children and thought, huh, you were kind of funny once and so was I. I wanted that back.
I missed our Saturday morning breakfasts out on the town armed with baked goods and too-strong coffee and crossword puzzles. I missed the banter. I missed the random hand-holding back when my hand wasn’t already claimed by someone else. It is good to miss these things. It is better than deciding the status quo is our new normal and marching on.
So, when a work trip came up that would send me to Los Angeles for three whole nights right around my birthday, I worked up the nerve, rubbed my hands together, and made some magic. I enlisted all the grandparents. The out-of-town ones took our twins and my parents stayed with Charlie. Divide and conquer. I also hired Charlie’s school aide to come in for four-hour shifts. Oh, and we rented a lift because he is heavy and I want everyone to stay safe. I bought all his favorite food. I wrote detailed “day in the life” emails so everyone knew the flow of his day. And then I had to let go. That was the hardest part. I got on a plane and flew across the country where I could not intervene if he did not eat well or did not sleep well and I trusted that everyone would be just fine. And you know what? They were.
Jamie Sumner is a special needs mom and author.
Jamie-Sumner.com
Author of the middle-grade novels:
