I woke one morning this past week to read on my Facebook page that a young boy, a very young boy, died early that morning. SMA took his life. The post was a mixture of an author dazed and confused, angry and despondent.
The young boy was the fifth child lost to SMA (that I know of) in as many days. Five days. Five children.
The posts, when they appear, quickly fill with comments from all walks of life. The thread grows longer every minute as more and more people chime in. Many of whom have lost a child to SMA or some other disease. Expressions of sorrow and support echo through the writings. Sympathy and empathy abound.
The SMA Community is a tightly knit community bound together unwillingly by the strings of a disease most had never heard of. Yet bound together we are. As I have written so many times before, we celebrate our children's triumphs together, extend a helping hand when possible to one another, and mourn at the loss of every person. It's a community that hopes together while at the same time walks in disbelief of the "how's" and "why's" of life itself.
There is one aspect I have taken particular notice of as I clumsily walk this path of SMA. I notice that every parent recognizes the amazing strength people with SMA possess. The disease itself, by its very nature, is debilitating and as we know, deadly. Yet children of all ages battle against it with pride, dignity, self-confidence, and grace. Adults that survive their childhood exemplify what it means to be a survivor against the odds. I feel that the spirit that resides in those afflicted with SMA is the spirit that drives the hope for a cure. That spirit is strong. That spirit is alive. That spirit cannot be quelled.
As we take the moments during our days and nights to think of those who have lost their earthly life to SMA, to think of those left behind in the wake of their death, we can also, in the same breath of thought, allow the undying spirit of our SMA warriors, each and every one of them of all ages, enter into our consciousness and fuel our hopes for the future of those whom still fight every single day.
The young boy was the fifth child lost to SMA (that I know of) in as many days. Five days. Five children.
The posts, when they appear, quickly fill with comments from all walks of life. The thread grows longer every minute as more and more people chime in. Many of whom have lost a child to SMA or some other disease. Expressions of sorrow and support echo through the writings. Sympathy and empathy abound.
The SMA Community is a tightly knit community bound together unwillingly by the strings of a disease most had never heard of. Yet bound together we are. As I have written so many times before, we celebrate our children's triumphs together, extend a helping hand when possible to one another, and mourn at the loss of every person. It's a community that hopes together while at the same time walks in disbelief of the "how's" and "why's" of life itself.
There is one aspect I have taken particular notice of as I clumsily walk this path of SMA. I notice that every parent recognizes the amazing strength people with SMA possess. The disease itself, by its very nature, is debilitating and as we know, deadly. Yet children of all ages battle against it with pride, dignity, self-confidence, and grace. Adults that survive their childhood exemplify what it means to be a survivor against the odds. I feel that the spirit that resides in those afflicted with SMA is the spirit that drives the hope for a cure. That spirit is strong. That spirit is alive. That spirit cannot be quelled.
As we take the moments during our days and nights to think of those who have lost their earthly life to SMA, to think of those left behind in the wake of their death, we can also, in the same breath of thought, allow the undying spirit of our SMA warriors, each and every one of them of all ages, enter into our consciousness and fuel our hopes for the future of those whom still fight every single day.
