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6 Reasons Why Social Isolation Is Nothing New for My 'Rare' Family

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We have been in strict social isolation now for 157 days. My husband is working full-time at home and I am working part-time. Our three kids, ages 14, 12 and 9 are home with us.

Our youngest son lives with a rare brain disease called vanishing white matter disease (VWM). He can’t stand, walk or move on his own; he needs help with absolutely every task. We have no home help. 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.

We live every single second of every single day knowing that it could be our last with him.

Obviously, because of Sam’s disease we are in the “high-risk” covid category, and have to be especially careful with social distancing.

Sounds difficult right? Some may think we should be counting the seconds until we can send our kids back to school, but we are not. 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.

For many, social isolation has meant:

  1. You live with constant uncertainty.
    We have lived with constant uncertainty every second of every day for seven years — seven years of  waiting for the ball to drop, wondering if today will be the last with our son. We learned long ago to only think about what needs to get done that day. We don’t plan ahead if we can avoid it. We book flights a few weeks before we travel, we book our hotel room an hour or two before we arrive at the hotel, we reply to invitations at the very last second. With our son, we just never know what the next day will bring, so we have to take each day as it comes. This has allowed us to enjoy the journey and not worry about what comes next.
  2. You fear for the future.
    We have known for seven years that our son would die before his time. That he will never grow up. We live with an ever-present fear bubbling below the surface. We fear his loss, we fear what will happen to those of us left behind. How would it impact us? Our other kids? Our relationships with friends and relatives? We have no way of knowing, and it is a heavy burden to bear. 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 live in the now, to try not worry about the things I cannot change in a future that is uncertain. Living in fear is not living, and in order to appreciate every moment we have with our son, we learned how to set that fear aside. Fear of something you can’t control can feel like a waste of effort, one we don’t have the luxury of anymore.
  3. You feel like your life is paused.
    COVID-19 makes you feel like your life is on hold right? Welcome to our world. Our life has been on hold for years. Like many families with physical disabilities, we have had to make very expensive adaptations to our home, meaning a move is not possible. I can’t go back to work outside the home. The constant uncertainty means one parent has to be nearby at all times and my husband travels regularly for work, so I have to be always available for my son. 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.
  4. You are together all the time.
    I remember very clearly the first summer after Sam was diagnosed. It was hell. We were living in England at the time and it was a particularly cold and wet summer. We had no camp or activities, because overnight Sam lost the ability to walk and taking him anywhere became difficult. We were used to being constantly on the go like many families, and suddenly we were home and together all the time. 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.
  5. Your kids are struggling.
    Our healthy kids have spent years having to make accomodations for their brother, not being able to do many of the things that most families take for granted. Any out-of-the-house activities have always been very limited because getting Sam out of the house requires a great deal of logistics. They are used to being told no when they want to do something because of this. We really had no idea how this was impacting them and how it would impact them in the future. But Covid-19 has shown us this has built resilience. They are used to not having a routine; they are used to last-minute changes of plans to accommodate their brother. They are used to having to sacrifice what they want for the greater good. They are also used to being self-sufficient. They have learned how to take care of themselves because they have to, because taking care of their brother is a full-time job for me. Of course they are getting tired of being home and miss their friends, but there have been no meltdowns, breakdowns or fighting any more than usual.
  6. You are lonely.
    Loneliness is a constant way of life for me. 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, and you come into contact with that, 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 a small group of close friends that I don’t see often enough. I feel less lonely now than I did pre-quarantine. Large, anonymous events are the ones that I struggle with the most, so COVID-19 did me a favor in cancelling the endless end-of-year events at our kids’ schools this year.

Despite all of these things, we are truly happy. Facing our son’s death taught us how to live. Nothing is worse than losing a child. Anything else is minor and something we can handle. Don’t get me wrong, 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. Innocence truly is bliss. But this does not mean we are unhappy, it’s 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.

Does this mean we don’t miss social interaction? Leaving the house? We aren’t bored? No. We feel all of those things. What it means is that we can do anything for as long as we have to and still enjoy it, because the alternative is death. If our son gets coronavirus, it will in all likelihood kill him, if it doesn’t kill him it will probably take what’s left of him away from us and leave us with a shadow of the big personality that is our son.

As things are opening up for many, things are not opening up for us. There is still a large segment of the population that is at risk and can’t take any chances.

Every time you go to the beach or supermarket or backyard BBQ this summer, think of those who are still not able to risk the lives of their vulnerable loved ones and think about all the people out there who live like this all the time.

While many of you won’t have to live through this every day of your life, remember that if you did, like us, you might also find the joy in it.

You can follow Allyson’s story of living life fully with a terminally ill child here, and on Facebook, and Instagram and Twitter: @samvsvwm
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