I would like to thank all of you for all of your support this year. I have decided to stop posting. Caring for Dear Son is a lot of work and this has been an incredibly difficult year. He has grown a lot and is much bigger now, almost 140 pounds. He has lost a lot of skills and can not roll over. The physical demands to care for him, the lifting, the changing, etc. are taking their toll. I give his last medicine at midnight, and am frequently up at 1:30 a.m. to roll him over and then again at 2:45 a.m. and several times after 3:30 or so until I start his first g tube feeding at 4:30 a.m. Any later than that, it won't be completed in time for him to catch the school bus. With these hours, I find I am not able to be very creative, or even want to write much, since my focus is taking care of Dear Son, working part time and trying to get some additional sleep as well as managing all of the medical bills and supplies related to his care. Caring for Dear Son, and children like him, is a twenty four hour a day job.
My goal has always been the same. To keep him at home and care for him as best as possible. I am doing that now, it's just taking a lot more energy.
It has been a real pleasure meeting all of you. I have learned so much from all of your blogs. I will continue to read them as time permits, and look forward to the Grand Rounds every week. It has been a difficult year and your support and prayers for Dear Son during his MRSA pneumonia will never be forgotten.
Thank you so much for your friendship, your support, your concern and your wonderful comments. You are the best.
Wednesday, September 06, 2006
Monday, September 04, 2006
Hope
I vaguely remember visiting my aunt, on summer vacation. We visited once in a while, since it was on the way home, from our annual summer vacation to Idaho. Idaho, was where my father was building our house. He’d save his money all year, and then take his six week vacation every summer, to work on our house. He had just completed the house, the year before he died, at the age of forty six. I have fond memories of spending many days at the house with him, and especially, getting to ride home to this house, to spend the night, while the other kids stayed with Mom, at our aunt and uncle’s house.
My aunt Alice lived in Iowa and had three children, two boys in particular, both of whom had Muscular Dystrophy. I only remember the one son, who was around eighteen if I recall, when we visited. He was confined to a wheelchair, and we didn’t see him much. I was far too excited about the prospect of sleeping in the tent outside the house, on a beautiful summer evening. This would be exciting, or so I thought. I don’t remember that we got to sleep there overnight, but we spent a fair amount of time out there, until we decided we’d much rather sleep indoors.
It’s odd to think back to him now, when remembering this story. Odd, because when we visited, it was almost as if he was invisible. I don’t recall seeing him sitting outside with us, as all of us visited in the back yard. I don’t recall seeing him visiting with us in the house, as we visited some more. Nor at the breakfast table, or anything else. It’s kind of weird, when I imagine what it must have been like, being disabled, and in a wheelchair, nearly forty years ago. I doubt accessibility was much of an option or that they even had a ramp for him to go outside in the yard.
I do remember what he had though. He had Muscular Dystrophy. I remember distinctly that he died not too long after our visit. His throat muscles wasted away to the point where he could no longer eat. That probably explains why he was never at the breakfast table, lunch or dinner table. I can’t imagine the torture that this must have been, not only for him, but for his mother, seeing her full bodied son, lose his muscles as they wasted away, only to be confined to a wheelchair and eventually die. All of this, before his twenty-first birthday. If life weren’t cruel enough, she would get to watch this entire scenario repeat itself with her second son, who also was born with Muscular Dystrophy. You have to wonder sometimes, how a mother could endure the death of not one, but two of her children, to the same disease.
Most years, I watch the Jerry Lewis Telethon for MDA. I didn’t this year, namely because I forgot. When Dear Son was young, I often wished I knew what he had, because not knowing was far worse, than anything else. ( In 2002, the ARX gene was discovered, and Dear Son was the first one identified with one of the three ARX gene patterns. To date, only four to five other boys have been identified with his gene pattern, the rest of the boys falling into the other two gene patterns.) I often wished that I knew what he had, and that we had a telethon of sorts, so that I too, could have some hope for the future. The hope that he could someday walk. The hope for a miracle. Hope for the future.
I think back to my cousins, who died from Muscular Dystrophy, and wonder what my aunt must think, as she watches the telethon. I wonder if her son’s lives might have been different. I wonder if she cries, when she sees other children on the screen, knowing what they will go through. I wonder what she would say, if they talked to her today, about what life must have been like forty years ago.
I also wonder what it must be like for the mothers today, mothers of children with Muscular Dystrophy, to watch the telethon today. I would guess it must be pretty exciting. Exciting, because you have hope, hope for the future and hope for a miracle. Sometimes, as a mother, that’s all you’ve got.
My aunt Alice lived in Iowa and had three children, two boys in particular, both of whom had Muscular Dystrophy. I only remember the one son, who was around eighteen if I recall, when we visited. He was confined to a wheelchair, and we didn’t see him much. I was far too excited about the prospect of sleeping in the tent outside the house, on a beautiful summer evening. This would be exciting, or so I thought. I don’t remember that we got to sleep there overnight, but we spent a fair amount of time out there, until we decided we’d much rather sleep indoors.
It’s odd to think back to him now, when remembering this story. Odd, because when we visited, it was almost as if he was invisible. I don’t recall seeing him sitting outside with us, as all of us visited in the back yard. I don’t recall seeing him visiting with us in the house, as we visited some more. Nor at the breakfast table, or anything else. It’s kind of weird, when I imagine what it must have been like, being disabled, and in a wheelchair, nearly forty years ago. I doubt accessibility was much of an option or that they even had a ramp for him to go outside in the yard.
I do remember what he had though. He had Muscular Dystrophy. I remember distinctly that he died not too long after our visit. His throat muscles wasted away to the point where he could no longer eat. That probably explains why he was never at the breakfast table, lunch or dinner table. I can’t imagine the torture that this must have been, not only for him, but for his mother, seeing her full bodied son, lose his muscles as they wasted away, only to be confined to a wheelchair and eventually die. All of this, before his twenty-first birthday. If life weren’t cruel enough, she would get to watch this entire scenario repeat itself with her second son, who also was born with Muscular Dystrophy. You have to wonder sometimes, how a mother could endure the death of not one, but two of her children, to the same disease.
Most years, I watch the Jerry Lewis Telethon for MDA. I didn’t this year, namely because I forgot. When Dear Son was young, I often wished I knew what he had, because not knowing was far worse, than anything else. ( In 2002, the ARX gene was discovered, and Dear Son was the first one identified with one of the three ARX gene patterns. To date, only four to five other boys have been identified with his gene pattern, the rest of the boys falling into the other two gene patterns.) I often wished that I knew what he had, and that we had a telethon of sorts, so that I too, could have some hope for the future. The hope that he could someday walk. The hope for a miracle. Hope for the future.
I think back to my cousins, who died from Muscular Dystrophy, and wonder what my aunt must think, as she watches the telethon. I wonder if her son’s lives might have been different. I wonder if she cries, when she sees other children on the screen, knowing what they will go through. I wonder what she would say, if they talked to her today, about what life must have been like forty years ago.
I also wonder what it must be like for the mothers today, mothers of children with Muscular Dystrophy, to watch the telethon today. I would guess it must be pretty exciting. Exciting, because you have hope, hope for the future and hope for a miracle. Sometimes, as a mother, that’s all you’ve got.
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