As a Special-Needs Parent, I Use Work to Ground Myself
My gentle advice for parents facing a life-changing diagnosis: When at all possible, keep that thing that makes you whole.
When I found out I was pregnant, I did what most almost-parents do and, in my hormonal, daydreamy mind, gleefully contemplated the many adventures and milestones I could expect with my baby. I thought about those exciting first steps, first words, future birthday parties and shareable moments.
I imagined traveling the world with my child. I wondered if his looks and mannerisms might take after me, or be more similar to his father. I mulled over what college he might choose in the years ahead and the people he might come to love. Even when my child was no more than the size of a peanut, months away from being born, I had many aspirations and fearless predictions about the decades that stretched before all of us. There was no reason to believe that all of these normal things wouldn’t happen exactly like they were supposed to.
Then came the surprise diagnosis.
Though Theo still hadn’t reached certain general milestones by the time he was the age of one, were weren’t at all prepared to be handed a jarring pronouncement that our son suffered from a rare, neurogenetic condition that would cause, at a minimum, profound delays in nearly every aspect of his life.
To take a line from baseball icon Yogi Berra: “The future ain’t what it used to be.”
Angelman Syndrome, true to its official medical definition, robbed our son of his voice and delayed his ability to walk by years. It’s caused massive gross and fine motor delays, and is medically classified as a serious sleep and seizure disorder.
Theo, now six, is beginning to communicate with the use of an AAC device, but doesn’t have the ability to vocalize his needs or thoughts. He requires thorough routines and must have assistance in every facet of his life — from getting dressed to using the bathroom to eating and walking up and down stairs. He wakes regularly throughout the night, and is prone to seizures when he isn’t feeling well.
Having a child with profound needs is a never-ending exercise in the unexpected. It’s a heart-centric sentence involving boundless love, absolute allegiance, and radical, acceptance for for an unknown destiny. A diagnosis of this magnitude also requires a remarkable chunk of equity that’s massive parts emotional, physical and mental, which, to a large degree, sums up parenting in general. Yet as any parent of an atypical child can attest, it’s more than a full-time job.
This life is 24/7, requiring immense stacks of paperwork, countless meetings and therapy sessions, and agonizing decisions about caregivers, school programs, and medical procedures. I carry an emotional anchor that can’t be untethered. I equate the early years after my son’s diagnosis with running a daily marathon. Raising a child with needs was not only all-encompassing, but also wildly unpredictable. Lack of sleep or a seizure would supplant all intended plans and schedules.
Post diagnosis, our life became an absolute terra incognita, for which there was no map, no intended route, and barely an idea of which way to orient ourselves and our new life.
Then, more change happened.
Around the time Theo was two, I was laid off from my role as a lifestyle editor at a large women’s magazine. At the time, I felt deep-seated relief to walk away from the commitments of a company and focus solely on our child. For a few years, I did nothing but support his growth and progress by diving headfirst into things like his Medicaid applications, therapy appointments and visits to schools and specialists.
As exhausting as it was to be the stay-at-home, full-time mom, nurse, cook, maid and project manager for a child experiencing complex, multitudinous delays, I couldn’t shake the feeling that something was missing. My voice.
For all the roles you take on as a special needs parent, I felt the need to hold onto my identity to ground myself. It dawned on me that our child, who was working so hard to face and overcome his own challenges, was, in his own way, conveying this sentiment: “I have work to do, and so do you.”
Turning back to my “work,” the writing, saved me. Once I returned to my craft, the stories, poems, articles and narratives came pouring out. In many ways it was acutely medicinal to give myself permission to return to the creative side I had spent many pre-baby years cultivating. Although real-time deadlines often coincided with the difficult realities of special needs parenting, it was cathartic to have something familiar, yet unrelated, to keep me engaged.
Theo’s father, Daniel, also found work to be a therapeutic response to the life we were handed as well. At night, he would sew and create costumes for Broadway shows and Hollywood movies. Not losing sight of his own goals and career aspirations was imperative, and allowed him to soar in his industry.
To this day, we both still work, and make it a priority to keep these facets of our creative, working lives moving forward. Our roles outside of being special-needs parents makes us comprehensively better people, especially for our child.
My gentle advice for any new parents facing a life-changing diagnosis as we did: When at all possible, keep that thing that makes you whole.
Maybe it’s creating pottery or sewing, or time spent fixing old cars. Maybe it’s yoga or travel or baking french pastries. Maybe it’s all of the above.
With a diagnosis like Angelman Syndrome — or any diagnosis that is placed upon our children — so much of your life becomes immediately spoken for and defined in ways that are out of your control. Keep close what’s in your control, and what’s curative to your own heart.
This life, this narrative, is yours, too.
