It’s 11:17 p.m., and I just sat down to begin my workday.
Thank God I work from home.
Tonight, like so many nights over the past four and a half years, “home” is a hospital room.
My workspace is a fold-out bench-to-bed in the far corner of the room, with a direct line-of-sight to my son asleep in his hospital bed.
This is my workspace.
At least, it is one of my workspaces.
As a full-time working mom and a full-time medical caregiver to my 4-year-old son, I have many workspaces. My workspace is wherever my son needs me to be in that current moment, and bonus points if the space offers a sturdy seat or a dry spot of grass for my laptop.
Often, my workspace is the floor of the playroom in our home, responding to emails as he bulldozes towers of wooden blocks.
Sometimes, it is our kitchen counter as I participate in Zoom meetings while drawing up medications or measuring out precise ingredients for his meals.
Sometimes, it is in the car, answering phone calls while driving from developmental preschool to clinic appointments and therapy sessions.
Every evening at home, my workspace is the floor of my son’s bedroom, where he sleeps as I type, quietly crossing off projects from my to-do list, until the time arrives for “shift-change” when my husband takes over care for our son through the second half of the night.
But this night, my workspace is that trusty pull-out bench/bed in Room 323 on the third floor of the Forest Wing at Seattle Children’s Hospital.
Admittedly, it is not the most ideal workspace, hunched over a laptop resting on a fold-out chair, squinting into the dark. It may be far from an ideal work time as well.
And yet, this workspace, this work time, is a setting I know well. It is one in which I have developed a sense of comfort over time — over countless hospitalizations, weeks and months spent in a room just like this one.
Some days, this workspace offers more comfort than the place we actually call “home.” At least, that is true on the hard days — the days when the best place you can be is right here in this room.
I am a Medical Mom, after all.
Holding the title of “Medical Mom” means that I am the parent of a child with a medical diagnosis of disability. I am a nurse without official credentials. I am a therapist without the academic degree. I am a pharmacist despite never completing a single course that could even remotely prepare me for the level of responsibility I now hold. I am many things to my very medically complex child, and I have been since the day he was born.
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Being his mom — and his Medical Mom — is my favorite thing in the world.
It is the singular role at which I am my best self. I must be at my best — always. Caregiving requires it.
And yet, I still recognize the me that exists beyond motherhood, and beyond even medical motherhood.
I am a woman, a wife, a daughter, a sister, a pet owner, an activist, a philanthropist, an academic, a community volunteer — and also, of course, a medical mom.
Moms can be many things, certainly, extending far beyond their parental status.
However, becoming a Medical Mom and a Family Caregiver of a child with disabilities has meant fighting like hell to remember that I am that multitude. It means fighting to maintain my own identity outside of caregiving, beyond the boundaries of my role as a Medical Mom. It means fighting for the space in my day to pursue my own interests and follow my own passions, while also being everything my child needs me to be at all times.
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It is challenging to strike that delicate balance between the self you know as an individual and the self you must maintain as a caregiver.
It never stops challenging me.
Because without that everyday fight, caregiving responsibilities can and do consume you. It happens quickly and completely until, one day, you realize you have forgotten everything about yourself outside of who you are as a caregiver. You no longer have interests or hobbies or dreams for your future. The whole of your identity is wrapped up in the support role you play in a life in which you no longer have a voice.
I know because I have been there.
It is a lonely and isolating place fraught with the weight of responsibility of life-and-death consequences. It is a place that slowly eats away at your physical health and your mental well-being. It takes a toll.
There is, unquestionably, a price to be paid for a life consumed with caregiving.
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And so, I fight for my own self within and beyond my identity as a caregiver.
And, in that fight, I have grown comfortable in uncomfortable places. I manage uncomfortable situations. Often, scary situations. Sometimes, quite literally, life-threatening situations.
And then, when all is calm again, when the lights are turned down and vitals are stable, I pull out my laptop and begin my workday.
And I will do it again tomorrow, just like this — caregiving always; working whenever and wherever the situation lands me.
This is, after all, the workspace of a Medical Mom, who just so happens to moonlight as the same woman she was before she became that Medical Mom — chasing the dreams, goals and ambitions she refuses to let die.
Whitney Stohr is a nonprofit program manager whose work focuses on leadership development and disability advocacy. She is a full-time family caregiver and “Medical Mom” who works from home and hospital (or wherever caregiving may take her), always with her son Malachi by her side. Find her on Instagram @rollin.w.spinabifida.
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