Anticipating The Loss Of A Child: My Son Has VWM


Hope Can Be A Double-Edged Sword

loss of a child

Allyson Buck

I’m jealous of kids with cancer. I know, I know, I know. This makes me sound like a heartless crazy 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 that 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 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 head trauma or fever in turn causes him to lose motor control more quickly. 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. With less than 200 cases worldwide, 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 diseases, I am jealous. Jealous that they might get a shot at life. Jealous of that little bit of hope that their families can grasp onto, hope that 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.

anticipating loss of a child

Allyson Buck

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 suffer 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 that we are lucky in so many ways.

But I am still jealous of those kids. Jealous that 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 wouldn’t wish the loss of a child on anyone. I would, however, give almost anything for a chance for our son, instead. And because that’s not possible, I will focus on making every day count.

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