Unsung Heroes
I recently watched The Brooke Ellison Story on tv. While the story is no doubt an amazing one of courage and determination, I feel that the mother's part in it was not sufficiently highlighted. And so it goes with many of "these kind" of stories. More often than not, it's the mothers or in some cases, parents who provide so much support in coping with a disabled child, yet their part is often a silent role. A silent, but vital role.
I remember the time when I volunteered as a disabled kids coach. The first kid I was responsible for was one of a set of twins. Fate had dealt him a cruel hand, and his twin brother was totally normal while he was bound in a wheelchair for life with a brain abnormality. I remember the trepidation I felt at the prospect of being responsible for this kid, on my very first day too! But what I remembered the most was that the short period I was caring for him, was probably one of the few moments of rest that his mother could afford to grab. That was what kept me going. I was put in charge of different kids each time I went; some were more difficult to handle than others, but despite those difficulties, I was drawn to them. I think part of it was a personal quest, but another part of it was, "This is what the parents go thru every single day, 24/7. Wow." I admire the strength of these guardians.
I wondered about their futures. What it had in store for them. How it would be in the long-term. If there WAS a long-term. Would they outlive their family? Who would look after them then? I know that there's an emphasis on teaching them to be relatively self-sufficient and how to cope with disability, but how about the quadruplegics who can't even feed themselves and have no hope of regaining the use of any limbs? What about those who are sorely average (Brooke was smart so that helped her)? In such a competitive environment, what would happen to them? As heart-breaking as their deaths may be, I think that there is a tiny (even if unacknowledged) sense of relief, if they die before the carer does. Because I have no doubt that these questions haunt them every single day.
Another part of me couldn't help thinking that in a way, they were kind of lucky to be born in a first world country, with a supportive environment. The mortality rate is higher in third world countries and life is more harsh and unforgiving there.
A mother's love knows no bounds. Here's to all those unsung heroes out there.
I remember the time when I volunteered as a disabled kids coach. The first kid I was responsible for was one of a set of twins. Fate had dealt him a cruel hand, and his twin brother was totally normal while he was bound in a wheelchair for life with a brain abnormality. I remember the trepidation I felt at the prospect of being responsible for this kid, on my very first day too! But what I remembered the most was that the short period I was caring for him, was probably one of the few moments of rest that his mother could afford to grab. That was what kept me going. I was put in charge of different kids each time I went; some were more difficult to handle than others, but despite those difficulties, I was drawn to them. I think part of it was a personal quest, but another part of it was, "This is what the parents go thru every single day, 24/7. Wow." I admire the strength of these guardians.
I wondered about their futures. What it had in store for them. How it would be in the long-term. If there WAS a long-term. Would they outlive their family? Who would look after them then? I know that there's an emphasis on teaching them to be relatively self-sufficient and how to cope with disability, but how about the quadruplegics who can't even feed themselves and have no hope of regaining the use of any limbs? What about those who are sorely average (Brooke was smart so that helped her)? In such a competitive environment, what would happen to them? As heart-breaking as their deaths may be, I think that there is a tiny (even if unacknowledged) sense of relief, if they die before the carer does. Because I have no doubt that these questions haunt them every single day.
Another part of me couldn't help thinking that in a way, they were kind of lucky to be born in a first world country, with a supportive environment. The mortality rate is higher in third world countries and life is more harsh and unforgiving there.
A mother's love knows no bounds. Here's to all those unsung heroes out there.