What It's Like When Your Child Has Vanishing White Matter Disease

We have been in strict social isolation now for a year. My husband is working full time at home and I am working part time. Our 3 kids, ages 14, 12 and 10 are home with us, and though our schools are open, our kids have been remote learning since mid-march 2020.

Our youngest son suffers from a rare brain disease called Vanishing White Matter disease (VWM). He can’t stand, walk or move on his own, he wears diapers and needs help with every task, from carrying him around the house, to helping him eat, do schoolwork, change diapers. Absolutely everything. We have no home help due to COVID. His disease causes a loss of white matter, and therefore a loss of motor control, in reaction to stress. This means a fever or minor bump on the head could kill Sam. Obviously, because of Sam’s disease we are in the “high-risk” COVID category, so we have to be especially careful with social distancing.

Sounds awful, right? We should be yanking our hair out, counting the minutes until the kids can at least go back to school, but we are not. In fact, we are coping far better than most people we know, and most of the families like ours that we know are coping better as well. Why? Because this life is very similar to our normal life. So much so that it feels like we have been in training for something just like this for seven years.

The pandemic has given “normal” people a glimpse of how those of us with sick and disabled children live every single day. We have coped so well because …

We know how to live with constant uncertainty.

Families like ours live with uncertainty every second of every day. We are always waiting for the other shoe to drop, wondering if today will be the last with our son. We live knowing the difficulties of our life now don’t even begin to compare with the horrors that lie ahead of us. Never knowing what the next day will bring forces you to take each day as it comes and to find a way to enjoy the journey.

We fear the future.

This seems at odds with the point above, but it isn’t. We live with an ever present fear bubbling below the surface. Those of us with terminally ill kids are waiting for the day to come when they will take their last breath. Those of us caring for children that will need lifelong care, worry who will care for their child when they no longer can. Our future is one that I dread, not one that I look forward to. During the first year after Sam’s diagnosis, the fear felt like a constant yoke around my neck, an impossible weight that would never be lifted. But over time I learned how to cope. I cope by actively trying not to think about it. Of course this is impossible to do all the time, but I make a conscious effort to enjoy the present and have learned to minimize the worry. We learned the hard way that the things we worry about are rarely the things worth worrying about.

Our lives are paused.

Feels like your life is on hold? Welcome to the world of families with sick kids. It has felt like our life has been on hold for years. Like many families with kids with physical disabilities, we have had to make very expensive adaptations to our home, meaning a move is not possible. Very often one parent is unable to work in order to care for your child, meaning putting any career hopes on hold. You become reluctant to do anything that will rock the boat. Insurance, job flexibility and security are so much more important when your child is sick and disabled. Anything that is at least kind of working doesn’t change. We don’t plan more than a few weeks ahead, because our future is so uncertain.

We are together all the time.

I remember very clearly the first summer after Sam was diagnosed. It was hell. We were used to being constantly on the go like many families, and suddenly Sam lost the ability to walk and we were home and together all the time because it was so hard to go out. And it was awful. After that first few months, though, it got easier. We really got to know each other; we spent so much time together that we learned how to live with each other and enjoy being together. Now, we are so used to each other that being home all the time hasn’t changed how we interact with or react to each other — meaning I actually really like having them home all the time, and I am going to miss having them home when life goes back to normal.

Our lives are limited.

We are confined in what we can do and experience by the limitations of our son. We can’t do most of the things that able bodied, healthy families take for granted. Everything needs to be adapted for his limited abilities and we need to adjust our expectations accordingly. We are used to not having a routine, we are used to last minute changes of plans, we are used to having to sacrifice what we want for the “greater good.” Our healthy kids have spent years having to make accomodations for their brother, not being able to do so many of the things that their peers take for granted. COVID-19 has shown us this has built resilience. Of course they are getting tired of being home, especially since all of their peers are back to school and activities. But there have been no tantrums, meltdowns, breakdowns or fighting any more than usual.

We are lonely.

Loneliness is a constant way of life for families like ours. I feel lonely, even when surrounded by people — in fact, the more people, the lonelier I tend to feel. When your life and priorities and perspective is so different from almost everyone you come into contact with, it is very hard to relate, to find that common ground so necessary for connection. So I feel lonely, except when home with my family or with close friends that I don’t see often enough. I honestly feel less lonely now than I did pre-quarantine. Large, anonymous events are the ones that I struggle with the most, so COVID did me a favor in cancelling so many of those this year.

COVID has given everyone a glimpse of what so many special needs families live with all the time. For most people, COVID life will one day be a distant memory, but for many, we will keep living this life day in and day out post-COVID.

This is not an easy way to live, it is often incredibly difficult (as the whole world has now discovered). I often feel envious of people who have normal lives, how they live without the knowledge that one day their world will collapse. Ignorance truly is bliss. But this does not mean we are unhappy, exactly the opposite. This knowledge and perspective and change of lifestyle has given us more years of true joy and contentment than we would have had if Sam had not become ill. Though the price for this is way too high.