The first few weeks of fifth grade were going smoothly for my ten-year-old daughter, until one evening when I found her lying still on the couch, flat on her tummy, not moving, nor uttering a single word. I called out her name a few times but got no response. I walked over to her, touched her back gently, thinking she had fallen asleep.
“I can’t move, mummy,” she whispered. “I’m in pain.”
Perplexed, I asked her where her pain was and what she was feeling. I slowly helped her sit up on the couch as tears rolled down her cheeks.“I am so sorry, mummy,” she said. “I can’t go to school tomorrow.”
Earlier that summer, my daughter tested positive for Covid-19 and had developed a high fever, shortness of breath, shivers, and chest pains. She initially regained her energy and by the time school started, I thought she had recovered.
I was wrong. That night I found her lying on the couch was the beginning of my daughter’s difficult journey with Long Covid — a journey that transformed her life, and mine as a single mother.
At the time, back in 2021, we didn’t know anything about how Long Covid affected children. Now, we know more. While we don’t have statistics about how many children it affects in Canada, where I live, a recent study estimates around six million children have Long Covid in the United States.
We also know Long Covid can present differently in kids than in adults, and symptoms vary by age. Instead of being able to articulate that they are short of breath, for example, kids may not be able to play as they did before contracting Covid-19. Triggers like physical activities or schoolwork cause them to withdraw.
Over the course of a year, my daughter started to experience more symptoms within days or sometimes hours of doing activities. Body chills, racing heart, cognitive dysfunction, chest pain, frequent low-grade fevers, blinding headaches, noise sensitivities, severe insomnia, chronic pain, and much more. She woke up in the middle of most nights screaming, asking me to take away all of her pain, but nothing worked. “Mummy, I feel like my brain is being squished, my bones feel like they will break any second,” she said to me one night. “I’m afraid.”
I was either in shock, helpless, or speechless most of the time. As a mother, I was unsure of what to do and wondered if anyone would believe me if I were to talk about her illness.
Luckily, during my extensive nights of research, I found the Long Covid Kids Support Group on Facebook. I started to realize my daughter was not the only one out there; there were so many families across the world struggling to comprehend this disease.
A year into her being ill, my daughter became a wheelchair user. She was unable to attend school in person and struggled with cognitive dysfunction. She kept a diary of her symptoms and spent countless hours laying in bed in pain, begging for it all to be taken away.
With no help from four different medical providers, we exhausted ourselves trying to find a solution month after month. Hopefulness became replaced with hopelessness. Everything shattered whenever she had another crash, a flare-up, or was reinfected with Covid-19. Possibilities of finding care, treatments, or supports within our medical community started to fade away. A small handful of our friends and family who believed us chose to stay in our lives. Those who did not know how to hold space for us made a quiet exit.
Naturally, I started to doubt myself. Was I being a good mother? I was unable to cope with everyday life most days. I was underperforming at work, afraid to tell my boss what we were experiencing. Constantly having to take more time away. The past had slowly disappeared, and an overwhelming present swept over us.
About a year and half in, we took a chance and were able to test her for microclots in Germany, following research into the blood of people with Long Covid. While it was scary to observe the presence of microclots in her body, it was validating at the same time and helped confirm she had Long Covid. In Canada, many children with Long Covid are misdiagnosed and told their illness is psychosomatic. We then traveled to the U.S. to have her try out therapies for Long Covid, including visits to a functional neurologist and hyperbaric oxygen therapy.
Within a month of our return from the U.S., a first glimmer of hope appeared in my daughter: she could walk again! She shifted to using the wheelchair as needed. She was smiling and had regained small pockets of energy. A little piece of herself was returning.
But I knew in my heart, an extraordinarily long journey still lay in front of us. We were learning more about Long Covid from ongoing research every day. In the meantime, my daughter had to learn a new way of living with pain, readjust, and use her inner strength to dig herself out of each crash.
We were a small but mighty team, she and I, taking each day as it came. Our therapist would say, “Give each other grace whenever moments feel hard to swallow.” Whenever feelings of hopelessness snuck up on me, the only thing I could do was slow down, reshape, and reconcile with the present moment. We reconciled as a family that our daughter was now living a life with a chronic illness, and the healing process may not have an end date.
Instead of asking each other, “Have we worked hard enough to deserve rest?” We started asking, “Have we rested enough to seize our next moment?”
Instead of asking each other, “Have we worked hard enough to deserve rest?” We started asking, “Have we rested enough to seize our next moment?”
On New Year’s Eve 2023, my daughter turned 13 and entered her third year of Long Covid. “A single triumph brings me so much hope,” she’d say. Her symptoms started to reduce in intensity — she could sit up for hours, and walk from her bedroom to the washroom without collapsing — giving us hope that she was showing some signs of healing.
As she learned to live with Long Covid, intersecting with the swings of puberty, she was empowered to emerge as her new self. I cannot say she has recovered, but we are grateful for each day she is up and about and each week she has accomplished something she never thought she could. I learned to walk gently by her side, because I knew that many of her wounds were invisible. But Long Covid has never really been invisible, because if you look close enough, you can see how it changed both our lives.
As we were better able to manage my daughter’s symptoms, I took the leap to indulge my thoughts on what my next steps of life would look like. My inner monologue forced me to shift my purpose and direction in life completely. The more I connected with other families struggling to navigate our health system and support their children with Long Covid, the angrier I got.
For 15 years, I had worked and navigated the healthcare system as a professional in healthcare improvement and primary care. I redirected my anger into action by joining the newly-formed Long Covid Web, a national Canadian network supporting and conducting research in Long Covid. I was accepted to sit on the Patient Advisory Council, advocating for pediatric families.
Since taking on the role, I’ve learned more about the lack of support and care that pediatric families face. I learned to advocate for children living with Long Covid, and how to advocate for diagnosis rather than dismissal and redirection into a psychosomatic realm, which happens around the world to people with Long Covid, Myalgic Encephalomyelitis (ME), and other related chronic diseases.
I often think of a quote by writer Ekaterina Walter: “It is in the midst of change that we discover wings we never knew we had.” I found my calling, and it is to fight for our Canadian children living in a silent crisis.
Leeya writes: “This is a wish poem about a wish I held on to for the longest time. As I got sicker over time, I learned through emotions that wishes fade and grow. My wish was to go back to my old life and get back everything I lost, which faded over time, but never fully went away. I will always cherish the memories of my old self. I now know after living life with Long Covid for 3.5 years, that no matter how much I wish for my old life to come back to me, I have to live with the life I have now and that’s okay. The significance of my background painting is the sunrise that shows the dawn of a new day, that day — being at peace with not going back.”
Nandini Raj is the mother of a 13-year-old living with Long Covid who has become a writer and advocate for Canadian children and youth with this disease. She is also a healthcare professional with an MPH and 15 years of experience in the Canadian healthcare system.
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