After a year of strict social isolation, my husband and I find ourselves working from home while caring for our three children, ages 14, 12, and 10. Although schools have reopened, our kids have been learning remotely since mid-March 2020.
Our youngest, Max, is affected by a rare neurological disorder known as Vanishing White Matter disease (VWM). He is unable to stand, walk, or move independently, and requires assistance with every aspect of daily life, from eating to completing schoolwork. With no additional help available due to COVID-19, we manage everything ourselves. VWM leads to the deterioration of white matter in the brain, resulting in compromised motor control, particularly in response to stress. A simple fever or minor injury could be life-threatening for Max. Consequently, we are classified as “high-risk” for COVID, necessitating strict adherence to social distancing protocols.
It sounds overwhelming, but surprisingly, we’re coping better than many families we know. Why? Because our daily life has been shaped by challenges similar to those brought on by the pandemic for the past seven years.
The pandemic has shed light on the reality for families with sick or disabled children. We’ve become adept at managing uncertainty.
Living with Constant Uncertainty
Families like ours live with the knowledge that each day could bring new challenges. We are always bracing for potential setbacks, wondering if each day might be our last with Max. This perpetual uncertainty has taught us to savor each moment, embracing the present rather than dwelling on what could go wrong.
The Fear of What Lies Ahead
While we are accustomed to living in the moment, an undercurrent of fear always exists. For parents of terminally ill children, there is a constant worry about the day they will lose their child. Those of us caring for children who require lifelong support fear what will happen to them when we are no longer able to provide care. Initially, the weight of this fear felt unbearable, but over time, I’ve learned to manage it better. I consciously choose to focus on the present and minimize my worries, knowing that most of what troubles us is not worth the energy.
Feeling Like Life is on Hold
Ever feel like your life is paused? Welcome to the world of families with sick children. For years, we’ve felt like our lives have been on hold. Significant adaptations to our home have made moving difficult, and often one parent has to stay home, putting career aspirations on the back burner. Our planning is limited to just a few weeks ahead due to the unpredictability of our circumstances.
Togetherness in Isolation
I vividly remember that first summer after Max’s diagnosis when everything changed. We had to stay home more than ever, which felt suffocating. But over time, we learned to appreciate each other’s company. Now, our time together is a source of joy, and I know I will miss having everyone at home once things return to normal.
Life’s Limitations
Our experiences are often restricted by Max’s condition. We can’t partake in activities that healthy families take for granted, and we must constantly adjust our expectations. Our healthy children have learned resilience from having to make accommodations for their brother. Although they sometimes express frustration at being home while their peers are back at school, we’ve experienced fewer conflicts than usual.
The Loneliness Factor
Loneliness is a constant companion for families like ours. Even in crowds, I often feel isolated because my life perspective is so different from others. It’s challenging to find common ground. However, I feel less lonely now than I did pre-quarantine, as I struggle more with large gatherings than with my close-knit family.
COVID-19 has provided a unique insight into the daily realities faced by special needs families. While most will eventually return to a pre-pandemic lifestyle, we will continue navigating this challenging path long after.
This isn’t an easy way to live; it can be incredibly demanding. I sometimes envy those who live without the looming knowledge that their lives could change in an instant. Yet, this awareness has also led us to experience more profound joy and fulfillment than we might have otherwise known.
If you’re interested in learning more about the challenges of family life with special needs, check out this other blog post. For further guidance on home insemination, you can visit Make a Mom for comprehensive resources, or refer to American Pregnancy for insights into donor insemination.