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- What It’s Like When Your Child Has Vanishing White Matter Disease
by Jamie Lee
March 18, 2021
We have been in strict social isolation for over a year now. My partner works full-time from home while I have a part-time job. Our three children, aged 14, 12, and 10, are with us constantly, learning remotely since mid-March 2020, even though schools are open.
Our youngest child, who we’ll call Max, has a rare brain condition known as Vanishing White Matter disease (VWM). He cannot stand, walk, or move independently, relies on diapers, and requires assistance with every aspect of his daily life—from being carried around the house to eating, completing schoolwork, and changing his diapers. We have no outside help due to COVID-19. His condition leads to a loss of white matter in the brain, resulting in diminished motor control, especially in response to stress. A simple fever or slight bump could be life-threatening for Max. Given his condition, we fall into the “high-risk” category for COVID, necessitating extreme caution with social distancing.
It might sound unbearable, yet we find ourselves managing far better than many others we know. In fact, families like ours are generally coping well too. Why? Because our current lifestyle closely mirrors our everyday reality. It feels like we’ve been preparing for this scenario for the past seven years.
The pandemic has allowed “normal” families to experience a fraction of the uncertainty that those of us with sick or disabled children confront daily. Our resilience stems from several factors:
We’re Acquainted with Constant Uncertainty.
Families like ours navigate a world filled with unpredictability every single day. We live with the ongoing fear of the unexpected, wondering if today might be our son’s last. The challenges we face now seem trivial compared to the potential hardships ahead. This uncertainty teaches us to embrace each day and find joy in the journey.
We Carry a Fear of the Future.
This notion may seem contradictory, but it isn’t. Beneath the surface, there is an ever-present fear. For those of us with terminally ill children, the prospect of the inevitable is daunting. Even for those caring for children needing lifelong care, there’s anxiety about who will provide that care when we can no longer do so. The future often feels grim, and for me, the weight of that fear was suffocating in the early days after Max’s diagnosis. However, I’ve learned to cope by focusing on the present, consciously choosing to minimize worry. We’ve come to realize that the things we fret over often aren’t the ones that truly matter.
Our Lives Feel Like They’re on Hold.
Does it feel like your life is paused? Welcome to the experience of families with sick children. We’ve felt our lives on hold for years. Like many families with children facing physical challenges, we’ve made costly modifications to our home, making relocation unfeasible. Often, one parent must forgo work to care for the child, halting any career aspirations. We hesitate to make changes to our routines, as stability is crucial when caring for a sick child.
We Spend Every Moment Together.
I vividly recall the summer following Max’s diagnosis. It was a struggle. We were accustomed to being active, but after Max lost his ability to walk, we found ourselves at home constantly, which was tough. However, over time, we adapted. We learned to appreciate each other more deeply, forming stronger bonds. Now, our constant togetherness feels natural, and I genuinely enjoy having them around, dreading the day when life returns to “normal.”
Our Experiences Are Limited.
Our activities and opportunities are restricted by Max’s condition. We can’t engage in many activities that able-bodied families often take for granted, and everything must be adjusted for his capabilities. We’ve become accustomed to a lack of routine, last-minute changes, and sacrificing our desires for the greater good. Our healthy kids have learned resilience through the years, having to adjust their expectations and plans. Although they’re weary of being home while their peers return to school, we’ve faced no more conflicts than usual.
We Deal with Loneliness.
Loneliness pervades the lives of families like ours. I often feel isolated, even in crowds. It’s difficult to relate to others when our priorities and experiences diverge so significantly. I find solace only when I’m with my family or close friends, whom I don’t see nearly enough. Strangely, I feel less lonely now than before the quarantine; large events often amplify my sense of isolation, so in a way, COVID has helped by limiting those situations.
The pandemic has offered a rare insight into the daily lives of special needs families. While many will eventually move past this challenging time, our reality remains unchanged. This lifestyle is not easy; it can be incredibly difficult, as the world has now learned. Sometimes I envy those who live without the constant awareness that their world could be upended at any moment. Yet, this knowledge has also granted us profound joy and contentment over the years, despite the steep price we pay for it.
If you’re interested in exploring more about these experiences, check out this other blog post that dives deeper into these themes. You can also find valuable insights at this authority on the topic and this excellent resource for pregnancy and home insemination.
Summary:
Living with a child who has Vanishing White Matter disease means embracing uncertainty, coping with fears of the future, and navigating a life that often feels paused. Despite the challenges, families like ours find resilience, enjoy deep connections, and adapt to limitations. While loneliness is a common struggle, the pandemic has provided a glimpse into our lives, reminding others of the unique challenges we face daily.
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