This morning on my blackberry I had two Google Alerts. Not that it is unusual for sure, but today, these alerts pushed all of my buttons simply because of the language. They used words like "sufferers of Duchenne muscular dystrophy" and “genetic killer of kids”. We have to stop saying this. Our sons are not 'sufferers', in fact, they smile and their smile radiates and touches everyone in range. They are not 'suffering' as in pain and suffering. And, for the most part, I don’t see them suffering or hating their life. Rather, I see and hear from families that they love their lives.
Are we all projecting our 'suffering' on them? The fact that the word Duchenne causes our heart to break, that watching your son on the sidelines hurts, that the worry about what the future holds is painful, that as parents we often feel overwhelmed? Is it OUR suffering and we toss it over to our sons because, somehow saying we are suffering feels wrong? Adds to the guilt we often feel?
And “genetic killer of kids”…Our sons are living longer. Our expert panel members were not ‘kids.’ Duchenne is not a genetic killer of kids. Rather, it is a chronic disease that requires management. Our 'kids' become young men and adults. Let's not suggest they are dying as 'kids.' Let's be accurate. Duchenne is tough and we all want it treated and cured. But let's not frame this as if sons are suffering though life or that there is a 'genetic killer' lurking in the room ready to take his life at any given moment. Tell it like it is - Our sons need care, treatment, opportunities, and a cure. Without these things lined up, we all suffer.