Once upon a time, I was what you might call a typical stay-at-home mother with three children, ages 2, 4 and 6. As many mothers can relate, I felt my life was mostly consumed by yelling at my children, whether to break up a fight or get them to put their shoes on. 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 son Sam, then 2, fell off our bed. He fell only 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), 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 disappears and is replaced with water. Whereas the gray matter in our brains processes information, the white matter connects and insulates the gray matter and allows signals to travel within it. Without white matter, the signals the brain sends to the body are slowed or blocked, and 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, a significant loss of motor control, coma or even death. This is why Sam was unable to stand after hitting his head. The white matter disappeared that allowed his brain to send signals to his muscles enabling him to stand. There is no treatment for VWM. There is no cure for VWM. The life expectancy is five to 10 years after diagnosis, and the younger a patient is diagnosed, the shorter the life expectancy. To put it plainly, we had just been handed a death sentence.
After dealing with the initial shock of Sam’s diagnosis, It suddenly hit my husband and me: We were going to have to watch our son lose all motor control and ― because his cognitive functions would remain relatively unaffected ― he would be fully aware of what was happening to him. We were going to have to watch Sam slowly die, and there was absolutely nothing we could do about it. It was every parent’s worst nightmare.
Facing a tragedy like this should have pushed me over the edge and made it virtually impossible to cope, but amazingly, the opposite happened. In many ways, our family is happier — yes, happier ― than before we received his diagnosis. So what changed?
I gained the invaluable gift of perspective.
Compared with the loss of your child, pretty much everything else instantly falls into the not-so-bad category. Sam’s diagnosis made that ― and so much more ― clear to me. 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 do not matter or are out of my control. I no longer care about what anyone else thinks or does. I now care only about what my family thinks or does.
“In many ways, our family is happier – yes, happier – than before we received Sam’s diagnosis.”
I am a naturally energetic person, and my default setting has me trying to do as much as I can in as little 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, and I have to change his diapers, move him from room to room, get him in and out of the car and help him with even the simplest activities. Because of this, I can no longer run my other kids around to countless events 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 one another, 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 six months of constant fighting to achieve this), and I don’t yell nearly as much as I used to. Our new approach to life ― and our family ― has taken so much of the unnecessary stress out of our lives. Best of all, I know my kids now so much better than I used to, and we have made many memories as a family that will hopefully help see us through the very difficult future we know is ahead of us.
What’s more, because 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’s hard to make dinner from the hospital, for instance) I realized I needed to give my healthy children the tools and knowledge that will allow them to be as self-sufficient as possible. And I’m happy to report that they are now not only responsible for themselves but they also willingly help care for Sam by helping get him dressed, feeding him and keeping an eye on him when I can’t. I couldn’t be prouder of how my children have stepped up and how they have become kinder, more empathetic individuals because of this difficult experience. Their independence and pitching in has given us more time for laughing, playing and being together as a family.
As far as my life is concerned, I now make sure to also concentrate on myself and my adult relationships. It’s easy to lose yourself when you are a parent, to make your whole life about your kids and end up ignoring your own needs. The realization that at some point, one way or another, my kids were going to leave home — and leave my husband and me ― hit hard and fast after we learned Sam was sick. I realized I needed to have something left of and for myself when that happens. In order to be the best mother I can be, I have to have a healthy personal life that includes activities and experiences that aren’t related to parenting. So my husband and I go out. I go for regular weekends away with my girlfriends. I have interests and hobbies that I am dedicated to and dedicated to making time for. And I make my health a priority. I am the caregiver, and getting sick simply isn’t an option for me.
“We don’t put things off ... We do it now. We take advantage of every opportunity that comes our way because we know we don’t have time to wait for the opportunity to come again.”
I’ve learned to say no, and I’ve learned to do it (mostly) without feeling guilty. If I can’t do something, I just can’t do it. My first instinct used to be to always say yes, but now I commit myself only when it is something truly important to me or my family. 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 the one organizing school events. I. Just. Say. No.
I also accept help. This is still, admittedly, very hard for me to do, but I am getting better at it. I had to. I also try to give it as much as I can and to do it more freely than I used to.
We don’t put things off. We stopped saying, “When the kids are older, we will travel, go to that concert, spend time with friends, etc.” We do it now. We take advantage of every opportunity that comes our way because we know we don’t have time to wait for the opportunity to come again. We take the risk and don’t worry as much about the long-term implications as we might have before. We can’t worry about things that have not yet happened.
Our life is certainly not all rainbows and sunshine. I am no parenting expert, and I fail a lot. Most of us do. 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 try 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. We have learned that even in the midst of the deepest pain, those moments will always come and we will hopefully be able to see them. We know what the cliché “Only by experiencing the lowest lows can you truly experience the highest highs” really means.
I was forced into my new life by unthinkable circumstances, but in many ways, I am so grateful that I was. Sam’s diagnosis changed everything in our lives, but it also allowed us to understand who we are as individuals and as a family and how much we have to be thankful for. We don’t know what tomorrow will bring, but whatever it is, we will face it together, and as hard as things may get, I can take comfort in that.