Updated: June 2, 2020
Originally Published: April 24, 2020
In a world filled with uncertainty, many are grappling with anxiety about their futures, concerned about jobs, children’s education, and, above all, the health of their loved ones. As I balance my work responsibilities with my three- and four-year-olds attending preschool via Zoom, I find myself surprisingly composed amidst this chaos. Being confined at home, feeling disconnected, and making numerous trips to stores for essentials—these are not new challenges for me. For nearly two years, my family has lived in a state of vigilance due to my son’s rare disease.
My son battles Eosinophilic Esophagitis (EoE), a condition where his immune system mistakenly targets certain foods and environmental elements as threats. The parallels between navigating the pandemic and caring for a child with a rare condition are striking. My daily life involves meticulous planning to safeguard his health. This means sending specialized school supplies free from the top eight allergens and being prepared for any situation that could jeopardize his well-being. A simple cold can set him back for weeks, exacerbating his EoE and making it essential for him to eat only pureed foods and liquids due to dysphagia, a swallowing disorder.
Every outing requires me to be thoroughly prepared. I check and recheck our supplies, ensuring I have water wipes—safe for his allergies—and carry along his favorite Play-Doh to facilitate creative play with classmates. I also keep compounded Benadryl and an EpiPen at the ready for allergic reactions. Even over-the-counter medications pose a risk; it took months to collaborate with our pharmacist to identify the right fillers and capsules free from harmful additives.
The carefree days of my son being able to indulge in any food he desired or play outside without fear of triggering his condition vanished almost overnight. Our routine is tightly structured; any deviation can have disastrous consequences for his health. Stress, lack of sleep, or even a minor change can lead to serious setbacks. Last year, after a holiday where he stayed up late, he ended up hospitalized with a severe infection, and I found myself handing over a detailed corn allergy guide to medical staff—pointing out that even basic hospital supplies might contain allergens.
Family trips, once a source of joy, have become potential triggers, as we learned the hard way after a weekend getaway led to an outbreak of hives for my son. The challenge of finding safe food options for him has been daunting. At diagnosis, he was underweight and had a limited diet. I remember the panic of calling my mother in tears, overwhelmed by the fear of not knowing what to feed him. Thankfully, after much trial and error, we found a suitable nutritional formula that he still uses today.
Managing my son’s allergies and symptoms can be overwhelming. He experiences delayed reactions to allergens, and the slightest exposure can lead to significant distress. I have developed a comprehensive ten-page health care plan for his preschool, listing safe and unsafe foods, ingredients, and brands. Documenting his food trials and reactions for his allergist feels akin to searching for a needle in a haystack.
The emotional and social implications of EoE are profound. My son often faces disappointment when he cannot partake in activities or foods that his sisters enjoy. We’ve crafted creative alternatives, like a birthday “cake” made of decorative boxes filled with toys. The anticipation of trying new foods, culminating in an endoscopy to assess their effects, adds another layer of stress to our lives. Explaining the complexities of EoE to a four-year-old is no easy task.
Even as my son navigates the world with his invisible struggles, he finds joy in learning, playing with friends, and spending time with family. He brings laughter and light to our days, yet the reality remains that eating and drinking can be painful due to his condition. Weekly feeding therapy sessions aim to reduce his food aversions, and mealtimes require my husband or me to guide him through each bite.
The uncertainty of my son’s future as he approaches kindergarten weighs heavily on me. His symptoms are perplexing, leaving medical professionals often baffled. We’ve consulted numerous specialists and are currently exploring the possibility of Mast Cell Activation Syndrome as a coexisting condition.
Through the trials and tribulations of my son’s health journey, I have learned to live in the moment. I cherish his laughter and the sweet interactions he shares with his sister. We have adapted to our new normal, embracing each day with resilience. The fear of the unknown has lessened, and we face life’s challenges with the determination to conquer them together. This mindset has also prepared us to tackle the uncertainties surrounding the pandemic.
For those interested in more information about family planning and insemination, check out this insightful resource on home insemination kits or visit Resolve for excellent resources on pregnancy and insemination. Additionally, Make a Mom offers authority on couples’ fertility journeys.
Summary:
Living as a rare disease mom has equipped me with resilience in the face of quarantine challenges. While the journey of managing my son’s Eosinophilic Esophagitis is fraught with difficulties, it has also taught me to appreciate the present and embrace each day with determination. Navigating the complexities of his health prepares us to face any uncertainty, including the ongoing global challenges.
Leave a Reply