I knew by the time my son Oliver was three months old that something was wrong.
He should have been holding up his head and moving more on his own like his older sister did when she was three months old. The doctors told us he was just delayed — a late bloomer, as many boys are.
If he had not been my second child, I may have taken their word for it. But my maternal instincts were kicking in well before the first round of tests.
For four full years, we lived in the dark and without answers, only knowing that something was wrong with our son’s health. We did test after test and researched numerous diseases I had never heard of and could not pronounce.
When Oliver was three, we did a sweat test for cystic fibrosis. Two weeks later the test came back inconclusive. Between the first and second test, I could not stop reading and thinking about what a severe case of cystic fibrosis would mean for my son.
The second test came back negative, though my mind was in a dark place and our family still without answers.
When we finally got our answer, I was driving alone on the New Jersey turnpike. The doctor called my cell phone to say with enthusiasm, “Great news! We have a diagnosis.”
Parked on the side of the road, I listened as the doctor spewed off medical jargon to inform me that Oliver had a mutated SEPN1 gene. We would later learn that it was a rare form of muscular dystrophy call Rigid Spine, which was diagnosed in only 70 other patients worldwide.
With the doctor’s uncomfortable excitement and jargon ringing in my head, I started researching everything I could find on SEPN1.
As I descended into the black hole of WebMD and online university research papers, I felt a complicated mix of relief and fear. We were relieved to have an answer, though the diagnosis served us equal parts clarity and confusion. It was something no parent wants to hear ― your son has a degenerative disease.
After the diagnosis, my husband and I felt heartbroken and jolted. Nobody in our family had a disability and at the time, we knew little to nothing about the differently abled community.
We were suddenly living with disability under our roof and tasked with moving our family forward, without any instructions or handbooks on how to handle it all.
Every parent knows there is no easy guide on how to raise children, and there certainly is not a handbook on how to raise a child with a disability. Though my husband and I vowed never to treat Oliver differently, it is a given that he will require more attention and worry than his siblings.
Will he be able to dress himself or go to the bathroom on his own, or will he need help from me or his teacher? Will he be able to keep up with the rest of his class at a school field trip or will a friend stay behind to walk with him at a slower pace? Will he continue to only need his bipap machine for breathing during the night, or will he eventually need it 24 hours a day? What will life look like for him then?
There is no detail too small or plan too meticulous when thinking about all of these questions. After over a decade of trying to figure out the details, I still have moments when I forget that his disability prevents him from doing certain things, and I unmeaningly put his body and wellbeing at risk.
Oliver and I recently traveled together for a work trip through my organization, Runway of Dreams, which works to create mainstream clothing options for the differently abled community.
When I booked our flights, I did not consider the toll that transporting across a terminal would take on his body. I should have thought about the fact that Oliver is not able to walk across the terminal quickly or that he is not able to carry his backpack for the full stretch on his own. I should have thought to ask for help from airport security.
But for a moment, I forgot to think about those details and failed my son.
By the time we made it to the plane, Oliver was physically exhausted and I was mentally drained from stress, worry and guilt. I am so focused on making everything in Oliver’s life as normal as possible, that I sometimes forget that things are not “normal” and never will be.
I feel insecure about my decisions as a parent not only with Oliver, but with my other children as well. There is no clear formula for how to manage the limited time and attention you can give to the rest of your family. Siblings in particular will inevitably fall by the wayside to a child with a disability.
We have had to make many sacrifices along the way — soccer games missed, pickups and drop-offs momentarily forgotten, and several days spent away from home when Oliver and I are traveling for hospital visits, testing and events that have come out of our immersion in the disability world.
Earlier this year, Oliver and I were invited on behalf of Runway of Dreams to the White House for an event that celebrated inclusive fashion and design. I was thrilled and humbled by the invitation, but I wanted more than anything to share the experience with my entire family, especially with my now 14-year-old daughter Stella.
I called the organizer of the event and begged her to let me bring Stella with us, and I was eventually able to secure an additional pass. As excited I was to be honored, what was more significant to me was being able to share the day with the entire family, especially my other children.
Every day, I worry about Oliver, his health and his future, as well as my other family members and how I am spending my time with them. I have fears about the future and what that means for our family.
Though Oliver is still just 11, he asks me questions that remind me that he is growing up quickly and that he has his own fears about his future. Recently, he asked me if he will ever be loved.
“Because I walk funny and my back isn’t straight,” he said, “and I’m not strong enough to catch a girl and spin her around like in the movies.”
As much as I work hard to make his life as easy and “normal” as possible, what I want more than anything is to take those fears of his away and leave the worrying to me.
There is no handbook on how to parent a child with a disability, how to parent siblings of a child with disability, or how to parent a soon-to-be adult with a disability. There will be mistakes along the way, some bigger than others. There is only so much we can say or do to appease our own fears, let alone the fears of our children.
But at the end of each day all any of us can do is our best. That is the only rule I know how to follow.
For more information on Runway of Dreams, please go to www.runwayofdreams.org.