How my sons terminal diagnosis made us a stronger, happier family unit
Written by: Allyson Buck
A family dealing with VWM
It is hard to know where to even begin with my story. I guess I'll begin with me. I am a former management consultant turned stay-at-home mom. I have 3 kids, 14, 12 & 10 and 9 years ago I turned a cake decorating hobby into a small business and started The Greenwich Cakery. Oh and I also started and run a non-profit, the VWM Families Foundation, with my husband...more on that later.
I was once what you might call a typical stay-at-home mother with three children. As many mothers can relate, I felt like my life was consumed by yelling at my children, whether to break up a fight or get them to put their shoes on, there was a lot of frustration. I was frazzled. I was exhausted. I was cranky. I was in survival mode, thankful to just get through another day without screwing my kids up too badly. Then, suddenly, one night everything changed.
In February 2013 our then 2-year-old son Sam fell off of our bed. He only fell a few feet but he lost consciousness. After a minute – though it felt like an hour -- he woke up. He cried, we calmed him down and he seemed fine. Then we stood him up and he collapsed. We tried again. He collapsed again, his legs seemed unable to support the weight of his body. We didn't know it then, but Sam would never walk normally again.
After six weeks of doctor visits, tests, sleepless nights and countless hours of futile internet research, our son was eventually diagnosed with Vanishing White Matter Disease (VWM). VWM is an untreatable, terminal, and incredibly rare genetic brain disease. There are only 250 known cases of the condition in the world. Over time, the white matter in Sam's brain literally disappears and is replaced with water. The grey matter in your brain processes information, the white matter connects, insulates and allows signals to travel between the grey matter. Without white matter, the signals the brain sends to the body are slowed or non-existent, for VWM patients this results in a loss of muscle control. It is a very unusual disease in that any minor stress -- a bump on the head, fever or even a scare -- could cause a sudden loss of white matter and with it cause a large loss of motor control, coma or even death. This is why Sam was unable to stand after hitting his head, the bump on the head caused the white matter to disappear that allowed his body to send signals to the muscles needed to stand. There is no treatment for VWM. There is no cure for VWM. The life expectancy is 5 - 10 years after diagnosis, but the younger a patient is diagnosed, the shorter the life expectancy. We were just handed a death sentence.
Facing the death of my son didn't push me over the edge like I thought it would, amazingly the opposite happened. In many ways, we are happier than before we received Sam's diagnosis. I am a calmer and less stressed person and mother.
A large part of why is that I gained the invaluable gift of perspective.
Compared to the loss of your child, pretty much everything else instantly falls into the "not so bad" category. Sam's diagnosis made everything clear. My priorities are no longer muddled. So many things that seemed so important before, seem so trivial now. I can clearly see what matters and what doesn't and I no longer waste energy worrying about things that are not important.
You are probably wondering how I fit in taking care of 3 kids, one who is severely disabled, running a small business and a non-profit. It is because we have very few other obligations. We usually don't leave the house after the kids get back from school. I only take a small number of orders per week to make sure I can fit in work around being with my family.
I am a naturally energetic person and my default setting was to try to do as much as I can in as little amount of time as possible but I've slowed down. Before Sam was diagnosed, our kids were scheduled to within an inch of their life. They were always being entertained and kept busy. Because Sam has limited motor control -- he needs a wheelchair to get around, his speech is slow and his hands shake – the most basic tasks can take a lot of time. It takes him a long time for him to eat, I have to change his diapers, I have to move him from room to room, get him in and out of the car, and help him with even the simplest activities. It’s very time consuming and, so, I can no longer run my kids around to countless different activities or do many of the other 1,000 things I used to do on any given day. This means that we spend almost every afternoon after school at home. The kids have been forced to spend a lot of time with each other and it has brought all of us closer together. They've learned how to entertain themselves since they have no choice. They don't fight nearly as much as they used to (though this took at least 6 months of constant fighting to achieve) and I don't yell nearly as much as I used to. This has taken so much of the unnecessary stress out of our lives. I feel like I know my kids so much better now and we have made so many memories as a family that will hopefully help see us through the very difficult future we know is ahead of us.
I know there will be a time when my son gets sicker and I cannot be there for my other children in some of the ways I normally would be - it is hard to make dinner from the hospital for instance, I realized I need my healthy children to have the tools to take care of themselves. Not only have they taken responsibility for themselves, but they also willingly help to care for Sam, including helping to get him dressed, feeding him, and keeping an eye on him when I can't. I don't know how this might affect them in the long term, but in the short term they have become kinder, more empathetic, more resilient kids.
I say no a lot more now – and I do it without feeling guilty. If I can't do something, I just can't do it. I try not to overextend myself – of course it still happens, but not as often as it used to. The truth is my kids don't need to go to every birthday party. They don't need to try every sport or go to every game. I don't need to be an active member of the PTA or organize school events. I. Just. Say. No.
As a result of these changes, it almost feels like we have been training for the Covid pandemic for the last 7 years. Social isolation is not much different from our normal life. We obviously miss seeing friends and family like we used to, but because of Sam our social life was very limited anyway. Our kids have been fine, no breakdowns or meltdowns, no crying or complaining when they can't do what they want to do. Everyone in our house is used to making sacrifices to accommodate Sam.
Our life is certainly not all rainbows and sunshine. Caring for a sick, disabled child while trying to make sure you give enough attention to your healthy children is incredibly difficult. Like every parent I fail, a lot. I yell, I cry, I say things to my kids that I wish I hadn't. But I am able to forgive myself and move on because I truly believe I can only do MY best -- nothing more – and my kids don't need anything more than that.
Sam has given us a gift, the gift of being able to appreciate the time we have with him while we have it. This experience has taught my family that happiness does not mean being happy all the time, but, instead, means being able to look for and recognize moments of joy and contentment while they are happening, not just in hindsight.
If you are interested in following our journey with Sam, you can follow him on Facebook, Instagram, TikTok and Twitter @samvsvwm.
You can see my cakes on www.greenwichcakery.com or on Facebook and Instagram @greenwichcakery
Our foundation is at www.vwmff.org, or on Facebook or Instagram @vwmff
Allyson is owner of The Cakery Greenwich, runs the VWM Families Foundation, and is a superwoman, and badass mom. Please visit the website above to follow Sam’s journey, and to donate.
