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When I see mothers with their toddlers, jealousy often consumes me. I pass them in the food store, giggling with a container of Puffs in hand. Sometimes a tantrum is unraveling in a battle for a small toy from the collection beside the school supplies. Stressful or not, I long for the moments they’re living.
When my kids were little, I was envious of every mother I saw. Both strangers at the playground and friends from our Mommy and Me class had something I didn’t. I’d watch as they chased their toddler from the slide to the rock wall to the swings. It was as if physically existing was effortless to them.
Most other moms had a body that functioned. Mine was impaired by a mysterious disease.
When my older son was born in 2011, I’d been living with symptoms like fatigue, weakness and pain for six years. The more I walked or stood, the weaker I became, so our activities were limited to short bursts of standing time. Still, I forced myself to meet friends at the playground and attend story time at the library because I wanted him to experience the world and for us to savor these fleeting years together.
I used to clench my teeth walking up and down the aisles at Wegmans. My legs determined when time was up, whether I’d gathered everything on my list or not. At the playground, I ignored my body’s screams for help by trying to focus on absorbing the preciousness of my son’s youth. But no matter how badly I wanted to chase him as his little legs bolted against the wind, weakness gnawed through my limbs and shook my legs. My body hollered for a seat to rest. I simply couldn’t stand any longer.
When I stopped breastfeeding my younger son in 2015, fluctuating hormone levels angered this disease already raging within me. My overly exhausted body grew weaker until I was climbing the stairs from a sitting position and struggling to sit upright in a chair.
When my then-4-year-old was in preschool, I’d take my toddler to Gymboree —but mostly he played in our playroom because I simply couldn’t walk or stand, let alone take him to the park or a museum. The motherly guilt was deafening.
Tears collected as we sat in the Gymboree parking lot before each class. I questioned how I’d chase him around the tiny gym for an hour when my body was already devoid of energy. Forcing a smile, I pushed my legs beyond their capability, collapsing into the car afterward — finally letting the tears run.
I was disgusted with my body for being disabled and misunderstood. “Your lab work looks good,” doctors always said.
Attending birthday parties produced enough anxiety to destroy me, but my children deserved to go, even if it meant I’d struggle profusely. If I sat, I was neglectful for not watching my kid in the bounce house. If I didn’t mingle, I was antisocial. But standing was unbearable, as my legs burned from exhaustion, threatening to buckle at any moment.
I’d pray for a seat in a convenient location allowing me to be both present and off my feet — but kids don’t remain in one spot for long. I became so accustomed to smiling through the weakness, it was as if I were pretending to be someone else.
I barely recognized myself anymore.
“I simply couldn’t walk or stand, let alone take him to the park or a museum. The motherly guilt was deafening.”
Eventually, I could no longer walk into my older son’s preschool for pickup. The short distance from the car to his classroom required more muscle energy than I had. So, a teacher brought him to me for a disease I still couldn’t name. I saw more doctors than most see in a lifetime, but I was told my body was healthy. You need to exercise. You’re deconditioned. It’s fibromyalgia. Enjoy a martini. Stop searching.
This disease remained a mystery because doctors failed to take my words seriously. They saw how I looked on the outside and ignored how I felt on the inside. They took from me what I’d wanted most: my ability to be a mother.
Medical gaslighting stole the magic of my children’s toddlerhood.
“A nanny will be here in five minutes to meet us,” my husband admitted one afternoon.
“I don’t want a stranger in our home raising our children,” I’d protested repeatedly.
But he saw how I struggled to stand at the kitchen counter to prepare dinner —how I’d lean on the island to support me, but it wasn’t enough. He knew the only way I could take the kids outside was if they stayed in one spot and I could sit beside them and watch — but they wanted to explore. He noticed how my body collapsed after bathtime from the strain of reaching over the side of the tub. He had to work to support our household, so he made this decision for me — for us. Because I was too devastated by this disease and its destruction to think logically.
In 2017, a lumbar puncture finally revealed my diagnosis: multiple sclerosis. By that point, my sons were 6 and 3, and every moment of struggle I’d endured was validated by a single test. For a few years on treatment, my disability remained mostly crushing, but then, after three years, I began having longer periods of calmed symptoms. I could walk a little farther, and the weakness eased enough for me to feel human again.
Photo Courtesy Of Lindsay Karp
Only then could I see the years of motherhood I’d lost: the magical moments of milestones met — of tooth fairy visits and bathtime splashes — of museum explorations and arboretum adventures — of first days at school and every last I’d never experience again. All of it was muted to gray, falling into the background of my nightmare. They weren’t years of enjoyment, but of survival.
I wonder what could have been if gaslighting weren’t part of my diagnostic journey — if a doctor had ordered a lumbar puncture soon after symptoms began, when small lesions appeared on my brain MRI. Scenes of their early childhood unravel in my mind, only my body is that of someone with MS who was treated without delay.
In these imaginations, I’m mostly capable of everything I wasn’t — I am every mother I now watch with envy. But dwelling on our lost time is crushing me. It’s holding me in my dark past when what I want most is to move forward into the light.
Today, my sons are 13 and 10 years old, and life with MS is still a struggle. But I can prepare meals, volunteer at their class parties, run errands, exercise and take walks. If they’d let me, I’d push them on the swing or chase them around the playground until I need to rest. But the years have moved on, and so have they.
Shannon Moriah Photography
Sometimes I’m still envious of mothers who live without the burden of chronic illness. I can’t fathom a life without the hesitation of having to stand or walk. I’ll never live without worry over having enough mental and physical energy to survive each day.
But mothers with their toddlers hit me the hardest. Seeing them triggers memories of laughter tainted by utter exhaustion and tantrums that became stress on top of an already fragile situation. They are a reminder of the magical spark extinguished during what should have been the best years of mothering.
It’s easy to focus on what I lost, but I’m trying to look forward. I’m stronger than I was when they were little, and I choose to savor the time we now have.
Their childhood is far from over. We still have many upcoming soccer and track seasons, numerous science fair projects, and countless orchestra concerts to attend. Some of the best birthdays — and another bar mitzvah — lie in our future. My boys are maturing into their own unique personalities, and I’m right here beside them for every step. Perhaps our coming years will be the most magical yet.
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