Sam is smiling as always, even at the dentist. Today a fellow VWM child, Isaiah, lost his battle with the disease. The loss of a child with the same disease as yours is always difficult. It is hard to explain, but it feels like losing a family member, even though you have never met. Maybe it is understanding what that family is going through, and maybe it is the knowledge that you will eventually be in their shoes; it is probably a combination of the two. But it hurts, and tears are shed in empathy for what they have to endure. We are certainly not looking for sympathy nor do we deserve it, Sam is still very much here and Isaiah’s family has to begin the very long, very painful process of learning how to live again following the loss of a child.
Today I looked at Sam in the dentists chair, a huge smile on his face, able to find joy in the most miserable of situations right after hearing about Isaiah and was hugely grateful that we have had him in our lives. We rarely feel sorry for ourselves, this is partly because we know we must enjoy the time we have, this is partly because it is next to impossible to feel sorry for yourself with Sam around. He is joy personified. Today was a reminder of why we started the VWM Families Foundation, but most importantly a reminder that our top priority always has and always will be doing everything in our power to keep that smile on Sam’s face.