This is not going to be a cheery blog, it’s quite sad really – and for that I do not make any apology. Sometimes it is not a bad thing for us to step back from our own lives and look at others less fortunate. Over the past months I know many of us have complained of lockdowns, feeling like prisoners in our own homes. However, we have been able to open our back doors and step outside even in the harshest of times.
A few days ago I went to a funeral. It was for a 47-year old young woman who all her life has been a prisoner in her body – a body of muscular dystrophy. No back door to open, not even for a moment. Did she let this stop her from doing what she enjoyed – no! She loved music and went to many concerts but her greatest love was for one particular football team, and while she was able to she attended all their games – even flying to some that were interstate, until as her health deteriorated she was unable to do this.
While she was able to she volunteered at a number of places, she did more than her share for the community, even though this wasn’t always easy.
However, as the years went by so her body started to let her down. So much so that it became a massive undertaking for her to go anywhere, needing to be winched in and out of wheelchair and vehicles. She became an expert with technology – the same technology that allowed those who couldn’t attend her funeral to watch it via a video link-up.
Bedridden towards the end, having to totally rely on others to help her with every very personal chore, she still maintained a fighting spirit but eventually even a fighting spirit couldn’t help and she went into a rapid decline. Knowing that the end was near she refused to go to hospital and sadly a few days later she passed away at home with her family beside her.
The Australian rules football team that she was fanatical about wear red and white and we were all requested to wear these colours – nothing dull, so it was a sea of red and while that saw her off to her final resting place. The funeral started with the playing of the team’s ‘anthem’.
In the front row at the funeral, in a motorised wheelchair, was her older sister – older only by 13 months. Yes, she too has muscular dystrophy, but a different strain. She also has been a valuable volunteer in the community over the years, not letting her disability stand in the way of this. She also has made the most of her life as best she could. By the time the first daughter had been diagnosed with this horrible disease their mother was pregnant with the second child but was assured everything would be all right. Sadly this was not so.
I wondered what thoughts were going through the head of the older sister, as her disease is also taking its toll, was she thinking that in the not-too-distant future her parents would be going through this again, this time saying goodbye to her. Were her parents thinking the same?
A third daughter was born (my daughter’s friend for many years) and though she does not have muscular dystrophy she does carry the gene so she made the conscious decision some years ago that she would not have children – and has remained single. This family has now come to a full stop. No grandchildren to bring joy and to carry the name forward.
I looked at the parents, no longer young themselves and with their own health problems that come with aging, and I thought of the years of dedicated devotion they have given to their children. Two people who met and married, planning a healthy family, not knowing what fate had in store for them. Never saying ‘why us’ but giving all they could to the welfare of their family. Loving them, enjoying the good times with them, supporting them in the bad ones. Giving up their own lives for the welfare of their children. Try to imagine if you will two severely handicapped children in a family and what this would entail. A lifetime of medical appointments, hospital visits, and so on. Childhood illnesses that were far more severe than would have been the case had they not been so afflicted. Parents watching their children in pain and not being able to do anything about it, pain that a kiss and a band-aid would not fix.
Why have I written this blog? Well if you enjoy good (or even reasonably good) health, and your children also are healthy, next time you feel hard done by because the weather isn’t what you would like it to be, or there are restrictions that upset you, or you have a sniffle, or you would like something you can’t afford, or (heaven forbid) your football team didn’t win, step back, take a deep breath, and spare a thought for those who wish that was all they had to contend with. Instead of thinking of what you haven’t got that you wish you had, think of what you have got and be thankful.
Enjoy the day, not everybody can.
A few days ago I went to a funeral. It was for a 47-year old young woman who all her life has been a prisoner in her body – a body of muscular dystrophy. No back door to open, not even for a moment. Did she let this stop her from doing what she enjoyed – no! She loved music and went to many concerts but her greatest love was for one particular football team, and while she was able to she attended all their games – even flying to some that were interstate, until as her health deteriorated she was unable to do this.
While she was able to she volunteered at a number of places, she did more than her share for the community, even though this wasn’t always easy.
However, as the years went by so her body started to let her down. So much so that it became a massive undertaking for her to go anywhere, needing to be winched in and out of wheelchair and vehicles. She became an expert with technology – the same technology that allowed those who couldn’t attend her funeral to watch it via a video link-up.
Bedridden towards the end, having to totally rely on others to help her with every very personal chore, she still maintained a fighting spirit but eventually even a fighting spirit couldn’t help and she went into a rapid decline. Knowing that the end was near she refused to go to hospital and sadly a few days later she passed away at home with her family beside her.
The Australian rules football team that she was fanatical about wear red and white and we were all requested to wear these colours – nothing dull, so it was a sea of red and while that saw her off to her final resting place. The funeral started with the playing of the team’s ‘anthem’.
In the front row at the funeral, in a motorised wheelchair, was her older sister – older only by 13 months. Yes, she too has muscular dystrophy, but a different strain. She also has been a valuable volunteer in the community over the years, not letting her disability stand in the way of this. She also has made the most of her life as best she could. By the time the first daughter had been diagnosed with this horrible disease their mother was pregnant with the second child but was assured everything would be all right. Sadly this was not so.
I wondered what thoughts were going through the head of the older sister, as her disease is also taking its toll, was she thinking that in the not-too-distant future her parents would be going through this again, this time saying goodbye to her. Were her parents thinking the same?
A third daughter was born (my daughter’s friend for many years) and though she does not have muscular dystrophy she does carry the gene so she made the conscious decision some years ago that she would not have children – and has remained single. This family has now come to a full stop. No grandchildren to bring joy and to carry the name forward.
I looked at the parents, no longer young themselves and with their own health problems that come with aging, and I thought of the years of dedicated devotion they have given to their children. Two people who met and married, planning a healthy family, not knowing what fate had in store for them. Never saying ‘why us’ but giving all they could to the welfare of their family. Loving them, enjoying the good times with them, supporting them in the bad ones. Giving up their own lives for the welfare of their children. Try to imagine if you will two severely handicapped children in a family and what this would entail. A lifetime of medical appointments, hospital visits, and so on. Childhood illnesses that were far more severe than would have been the case had they not been so afflicted. Parents watching their children in pain and not being able to do anything about it, pain that a kiss and a band-aid would not fix.
Why have I written this blog? Well if you enjoy good (or even reasonably good) health, and your children also are healthy, next time you feel hard done by because the weather isn’t what you would like it to be, or there are restrictions that upset you, or you have a sniffle, or you would like something you can’t afford, or (heaven forbid) your football team didn’t win, step back, take a deep breath, and spare a thought for those who wish that was all they had to contend with. Instead of thinking of what you haven’t got that you wish you had, think of what you have got and be thankful.
Enjoy the day, not everybody can.