Allyson Buck

@allyson-buck | contributor
Allyson is a full time mother of three and part time cake decorator. Her youngest son suffers from a very rare, terminal brain disease called Vanishing White Matter Disease.
Allyson Buck

Managing Your Child's Rare Disease Through the COVID-19 Pandemic

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: 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. 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. 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. 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. 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. 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

Allyson Buck

Being a Wheelchair User in Public and Feeling Invisible

Everyone can recognize wheelchair users. What most people don’t realize is that wheelchair users also have superpowers — the main one being invisibility. This is a strange phenomenon you can only experience when using a wheelchair or when spending time with a wheelchair user. It appears that once a human being sits in a wheelchair, they are no longer visible to other human beings! It is quite remarkable really. My son Sam, who is 9, lives with a very rare brain disease and has not been able to walk or stand for six years. His wheelchair is his only means of getting around. Usually people are kind and helpful when out with a wheelchair user — unless you are waiting in line. Then suddenly, wheelchair users become invisible. This happens more than just occasionally. People literally just step right in front of our son as if he doesn’t exist, as if he is not as important as people whose bodies are able to stand. Recently I took Sam to an arcade. Someone was on the “claw” machine, which Sam wanted to play next, so we stood behind the person playing, waiting for them to finish. Sam was in front and I was behind him holding onto his wheelchair, clearly waiting. Sure enough, two kids come and stand right in front of us. This also happened on a racing game; I parked next to the game to get Sam out of the wheelchair, and by the time I lifted him up someone else was sitting in the driver’s seat. These are not isolated incidents. This happens all the time. It is not just children who do this; adults are just as guilty. It was particularly hard to keep our cool on a trip to Disney. Anyone who has been to Disney knows that you must wait in line — a lot. Almost every time we were waiting in line, someone stood in front of us, and it was usually never children (who didn’t know any better), it was almost always an adult, who should know better, who stood right in from of Sam as if they didn’t see him. We have started to have to put another person in our family in front of Sam to prevent this, or if I’m on my own with Sam, I stand in line and have him next to me instead of in front. This makes it very difficult to push the wheelchair forward, but it is better than constantly having to tap people on the shoulder and explain that Sam too is a human being also waiting in the line. The stranger thing is that most of the time people aren’t even very apologetic. They seem completely unaware they may have done anything wrong. This phenomenon, as far as I can tell, is exclusive to wheelchair users. None of my other friends or family members have experienced this, no matter how young or small they are. It is hard enough just getting around in a wheelchair, so really this just adds insult to injury. A dear friend of mine, who struggled with stage 4 metastatic breast cancer, was planning to take her family to Disney. She knew she would be unable to walk, as she needed a cane for support at the time, so she rented a wheelchair. I warned her of this phenomenon, warned her that she would suddenly become invisible once she sat in that wheelchair. She was incredulous when I told her and really didn’t believe me. Sure enough, when she came back she had experienced the invisibility superpower that comes with wheelchair use firsthand. There is so much to be learned from people with disabilities and about how we need to include them in society. I know this firsthand. My son has taught me more than any other person I have ever met. They often have learned hard lessons when it comes to resilience, determination, patience, and humor in the face of adversity. I honestly can’t figure out why people don’t see wheelchair users. If anything, at the very least, they take up more space than a standing person, and aren’t any shorter in the wheelchair than a child. So why are some of us choosing not to see them? It all really baffles me. Please, see them, look at them, talk to them, acknowledge them as humans with the same wants, needs and rights as you. And please, whatever you do, don’t stand in front of them. Have you experienced people being “unable” to see your child’s wheelchair? What lessons have you learned from it? Let us know in the comments below. Follow Sam’s story on Facebook, Instagram and Twitter

Allyson Buck

Struggling With the Terminal Aspect of Vanishing White Matter Disease

I am jealous of kids with cancer. I know, I know, I know. This makes me sound like a heartless person. I am not, I promise. Let me explain. The other day on Facebook, I saw a post about a child going for their third round of chemo. Instead of feeling sympathy or sadness, I felt jealousy. Then, of course, I felt guilty. This child is suffering. The parents and siblings are suffering. The situation is terrible — but this child also has a chance. No matter how slim, there is a chance the treatment will work and they will live a normal, happy life. That is what I envy: a chance. Nearly three years ago our youngest son, Sam, was diagnosed with a very rare brain disease called vanishing white matter disease (VWM). It causes the white matter in his brain to disappear over time. And if he has head trauma or fever, it causes him to lose motor control. There is no cure for this disease. There is no treatment for this disease. VWM is terminal. We know our son is going to die long before he should, and we know we are going to have to watch it happen. Because it is so rare, there is little hope for a treatment for Sam. There is little money for research and little awareness. Sam doesn’t really have a chance. When I hear about kids undergoing treatments for their disease, I am jealous. Jealous they might get a shot at life, jealous of that little bit of hope their families can grasp onto. Hope I so desperately wish I had. That said, hope can be a double-edged sword. Hope can make you put your life on hold, waiting for the treatment to work. Hope can cause you to put off until tomorrow what you should have done today. Hope can keep you mired in your grief, waiting for a miracle. In many ways, we are lucky. We have very few doctor’s appointments because there is nothing any doctor can do. We don’t spend our days in and out of hospitals, our child doesn’t have to undergo debilitating treatments and we do not have to watch our child in pain in order to get better. We are able to enjoy the time we have with Sam because we are so aware that the time we have is finite. We know this is a gift. The lack of a chance has in many ways allowed us to be happy, happier than we were before Sam’s diagnosis. We are so much more appreciative of everything we have, so aware we are lucky in so many ways. But I am still jealous of those kids. Jealous they might have a chance at life, jealous of the hope they feel, jealous of the treatments they undergo. And for this I am very sorry. I wouldn’t wish what they are going through on anyone. I would, however, give almost anything for a chance for our son. Instead, I will focus on making every day count. Follow Sam’s story on Facebook and on Twitter or Instagram. The Mighty, in partnership with Fuck Cancer, is asking the following: What was one thing you thought immediately after your diagnosis that you completely changed your mind about? Find out how to email us a story submission here .

Allyson Buck

Leukodystrophy: What to Know When Your Child Gets Incurable Diagnosis

Almost two years ago we sat in a neurologists office and were told our 2-year-old son had an incurable, untreatable, terminal brain disease. Vanishing White Matter Disease, a form of Leukodystrophy. If I could go back, what would I tell myself? This. The next three days will be the worst of your life so far. You won’t understand how you’ll keep going, how you’ll ever be happy again, how you’ll ever live a normal life again. Your life will forever be divided into before the diagnosis and after. For the next year you will hurt. Terribly. You’ll have never felt such pain before. The pain will at times feel almost physical. You’ll sometimes hide it because most people won’t know how to deal with it. They’ll want to help, to make you feel better, but you know they can’t. They can’t begin to imagine how it feels to know your child is going to die, and you truly hope they never will. You will be angry. You will see some bratty child and think, “Really? That kid gets to live and my child has to die? Really?” You’ll know it’s a horrible thought and you shouldn’t be thinking it, but you will. You will be afraid. Afraid of what this will do to you and your family. Afraid of what happens after your child’s death. You know that knowing what’s coming will not make it any easier. You will be overwhelmed and exhausted. But then slowly, it will start to get easier. The anger will fade, the fear will no longer keep you up at night. The worst has happened; there isn’t much left to fear. The pain won’t come as often, though you know it will always come for the rest of your life. You’ll start to think you might be able to handle it. Y ou’ll start to accept your child’s fate. At the same time you’ll fight with everything you have to get proper care for your child, to find a treatment or cure so no one else has to go through what you’ve had to go through. You will never again be the person you were before. You will become a much better person. At first you’ll want to go back, then you’ll start to be thankful for who you’ve become. You will see life with more clarity. You’ll stop wasting energy on things that really don’t matter. Your priorities will become clear. You’ll be kinder, more compassionate and more tolerant. So will your children, you will be so proud of the people they’re becoming. You will become stronger then you ever thought you could be. People will say over and over, “I don’t know how you do it.”  At first you did it because you didn’t have a choice. That you simply keep going will make you stronger every single day. Occasionally you will start to think that you can do this, you will be OK, and the gifts your child gives you every day will start to outweigh the pain. You will appreciate everything. You will be happy, happier than you were before your child’s diagnosis because you now know there’s no time to waste. Friends, family, strangers will be there, they will help. Every act of kindness will feel personal, and you will feel deep gratitude for each and every one. You’ll have a new appreciation for all the people who care so much for you, your child and your family. You will stop saying someday and start saying today. You will make jokes about your child’s illness and disabilities (these will make most people uncomfortable at first, but they’ll get used to your darker sense of humor). You will never, ever again underestimate the power of laughter. You will know the worst is yet to come. You will know the pain you felt when your child was diagnosed is only a shadow of the pain you will feel when your child is gone. In your grief, you hope you will remember that it was worth it; your child was worth it. The joy, meaning and purpose your child brought into your lives will ultimately be worth the pain. You will know that you won’t be alone. You will still feel overwhelmed. You will still question if you can keep going, but you will also know that you’ve done it before and you will do it again. You will know that you will never, ever give up. You can also follow this journey on Facebook. Want to end the stigma around disability? Like us on Facebook . And sign up for what we hope will be your favorite thing to read at night .