As my first son settles into middle school, I’m glad I overcame my fears about mothering with an unpredictable disease.
I wasn’t always sure I’d have kids.
I wanted them more than anything, but I was living with an undiagnosed disease when I met my husband and got married. “I struggle to walk far,” I admitted on our second date. “They’re not sure what it is,” I added. He was in his medical residency, so I felt comfortable being open with him. Neither of us imagined it was multiple sclerosis (MS).
We always talked as though we’d have children. I imagined the midnight diaper changes and 2 a.m. breastfeeding sessions. I couldn’t wait.
But I knew this disease — whatever it was — would make being a mother more difficult because walking and standing were already challenging. My legs needed to rest frequently, and I knew that caring for a baby around the clock might not be compatible with a body I couldn’t rely on.
Then, one August evening, about a year after our wedding, my husband said, “I’m ready to be a dad.”
My husband’s close friends already had kids, and it seemed that watching them enjoy parenthood made him want kids even more. I wanted children, too — but I was nervous. I saw mothers at the park, pushing their children on the swings, spotting them on the monkey bars, and chasing them across the field. I worried I wouldn’t be able to do the same.
The next day, I thought about this as I sorted papers and organized materials, preparing my classroom — where I worked as a school-based speech-language pathologist — for another year. Reaching this milestone — making it to the beginning of another school year despite living with this unknown disease — seemed like proof that I was still thriving and that I’d be OK.
I’d lived with this mysterious disease for over 5 years, but no doctor could figure out what was wrong. It had taken so much from me, but I’d promised myself I wouldn’t let it take what I wanted most — to be a mother.
Without a distinct diagnosis, it was difficult to make decisions based on fact. At the time, one doctor said my symptoms possibly fell into the realm of fibromyalgia and that, hopefully, my condition would not progress. This comforted us as we decided to have children despite not knowing exactly what was wrong.
When I found out I was pregnant, I walked laps on the second floor of our home, back and forth from one bedroom to the other. I was proving to myself that I could stand, walk, and be the mother I’d always imagined.
When my son was born, I fooled myself for some time, changing diapers, reading books in the rocking chair, and holding him until he drifted off to sleep. This disease remained quiet enough that I could ignore it most days when he was little. But time passed, and every so often, my symptoms would worsen, and I’d reach out to my mother for help with my son.
Once my son was walking, he wanted to be outdoors, exploring trails and climbing at the playground. He was like those active toddlers I used to see at the park when I wondered if I was enough to be a mother.
It became harder for me to keep up, but I found ways to incorporate rests during our outings. Snack time on a nearby bench usually gave me the break I needed to push on.
I worried others would judge me for having kids when my body in no way resembled health — I judged myself, too.
When it came time to consider having a second child, I convinced myself, yet again, that it would all work out. I wasn’t willing to put our lives on hold for the unknown. Having faith that everything would be OK was the only way I knew how to keep living.
When my second son was born, I held him and cried. They were happy tears. I couldn’t believe that despite the years of doctors’ appointments and being told there was nothing wrong, even as my body said otherwise, here I was holding another perfect baby.
After I stopped breastfeeding my second son, my disease flared as hormones shifted. Sometimes, I found I had to skip outings with my kids because I had no strength. Other times, I faked my stamina during playdates and collapsed at home afterward.
I convinced myself I was capable of being a mother because no one else was going to do it for me. I don’t know if that was right or wrong. But I do know that no one knows what their future holds. No one can say with certainty how tomorrow will go.
I pushed through weakness in a way I never knew was possible. That was partly because I worried others would judge me for having kids when my body in no way resembled health — I judged myself, too.
It took another 2 years of pleading with doctors and repeatedly relaying my medical history to finally receive an answer — that I had MS.
Finally, after 13 years of searching for an answer, I began treatment for MS, and today, I am the mother I always imagined I’d be.
I attend my children’s soccer games and classroom parties and accompany them to museums, parks, and school events. Yes, I still have days occasionally when I feel overwhelming weakness. And sometimes, I still need to sit and rest during our outings. Even so, I’m doing more than I imagined I’d be able to. I never take that for granted.
Just last month, my older son began middle school. As I helped him prepare for this milestone in his life, I remembered that time when I questioned if I was capable of being his mother.
It’s not just the start of middle school that brings on these reflections. Each time a new school year begins, I think of that day when I prepared my classroom while wondering if my disabled body was enough to be a mother. I didn’t know what the year would hold for me, but I had enough faith to embark on a new journey anyway. I did the same when we decided to have kids.
I have so many memories of feeling like I might not survive when I pushed myself. But I did survive. I fought for my diagnosis, and I began treatment. I may not be capable of endless activity, but I am capable of being a mother.
In our home, “back to school” means facing the coming days with confidence despite not knowing what they’ll bring. It means believing you’re enough even when you’re not perfect.
I was always enough to be their mother.
Medically reviewed on October 16, 2023
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