I never envisioned myself as a homeschooling parent. It was a role I never sought after. My love for my daughter is immeasurable, and while I cherish being a mother, I lack the qualities of an exceptional educator. However, a few weeks ago, I found myself registering with a local homeschooling group and diving into curriculum research for the upcoming year.
My daughter was diagnosed with a rare autoimmune condition called Juvenile Idiopathic Arthritis (JIA) at the age of four. This diagnosis followed several months filled with hospital visits and invasive procedures. In fact, the diagnosis of JIA was a relief compared to the frightening possibilities we had been warned about, ranging from brain tumors to leukemia.
As a single parent, those initial months were the most challenging of my life, until now. JIA causes the immune system to attack the joints, leading to significant discomfort. Before her diagnosis, my daughter endured pain that made simple tasks like climbing stairs and using her hands difficult.
Once we understood her condition, she began a treatment regimen that involved weekly injections of a chemotherapy drug designed to suppress her overactive immune system. While this treatment has its challenges—like the headaches and fatigue she experiences—it has also allowed her to return to her active lifestyle, running and playing as she did before falling ill.
However, her treatment has also rendered her immunocompromised, which initially filled me with dread. Over time, I learned to manage this new reality, ensuring we consulted doctors promptly when she fell sick and allowing her ample time to recuperate. For three years, we were fortunate; while she faced several illnesses, none required hospitalization. I adopted a balanced approach, allowing her to enjoy life without excessive fear of germs, only urging caution when necessary.
Then came the COVID-19 pandemic. Amid her treatment, my daughter needed regular blood tests every three months. Her last visit was on March 13th, coinciding with the announcement of Alaska’s first COVID-19 case. The clinic was eerily quiet, and I noticed many families canceling appointments. At that time, masks were not yet recommended, but her doctor’s advice was explicit: “Keep her in a bubble if you can. Complete lockdown until we know more.”
Initially, I resisted this directive. After working hard to help my daughter enjoy a typical childhood, being told to isolate her felt overwhelming. As a single mother with no family nearby, it was daunting to think about navigating life without our support network. How could we manage without seeing friends or having assistance?
Ultimately, I accepted my doctor’s advice, trusting her judgment. We began our lockdown, ordering groceries online and avoiding restaurants. We took our dogs on secluded hikes, ensuring we were distanced from others. I balanced my daughter’s education with my work, often sacrificing sleep, while she learned to entertain herself for hours.
Surprisingly, she adapted well to our new routine. I, on the other hand, struggled with anxiety and depression, eventually seeking help from my own physician. The uncertainty of when this would end weighed heavily on me. I missed our friends, my support system, and the freedom of not worrying about my daughter’s health every time we stepped outside.
After ten weeks, I consulted my daughter’s doctor again, hoping for a change. Instead, she advised, “If you could keep her in a bubble for the next year, that is what I would recommend.” Hearing this was heartbreaking, especially when she suggested I prepare for homeschooling regardless of whether schools reopened.
It was the news I dreaded but had been quietly bracing myself for. While I watched friends advocate for schools to resume normal operations, I felt compelled to hold back my thoughts. My child, like many others, is deserving of life, and I worry for her safety.
I understand that my friends mean well, but I wish more individuals recognized that the measures in place aim to protect vulnerable populations like my daughter, along with the millions of others who are immunocompromised or elderly. This pandemic places nearly 25 percent of our population at risk of severe illness or death.
As I prepare for the challenges of working full-time while homeschooling, I see others voicing complaints about mask mandates and social distancing. They say, “Our kids shouldn’t live in fear.” I agree, but the reality is that we must also protect our children from witnessing the loss of friends and loved ones. Acknowledging these fears is vital; denial won’t change the situation.
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In summary, the journey of parenting an immunocompromised child during a global pandemic is fraught with challenges. While my daughter’s diagnosis was initially daunting, we learned to adapt. The added layer of COVID-19 has pushed us into unfamiliar territory, requiring a reevaluation of our lifestyle and educational plans. As we navigate these uncharted waters, it’s crucial to remember the importance of community and understanding for the vulnerable among us.