Gifts
I'm reading a book called Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, edited by Kathryn Lynard Soper (aka Queen Serene).
It's an amazing book, and I wish I'd had it when Girly Girl was born. I was so hungry both for information and for hope. Her birth felt like a death knell to my dreams (heck, I'd be caring 24-7 for a disabled daughter!). Not to mention a huge burden for the poor, tiny newborn.
This book presents the perspective I've come to have. "Your life will have flashes of color you never knew possible." Already I'm in grateful tears, and that's just the first line of the Forward, written by Martha Sears, wife of the famous pediatrician Dr. Sears (and apparently, mother of a child with Down Syndrome--something I did not know).
But story #2, "What to Do with a Boy?", is the one that pierced me. Abnormalities at an ultrasound led to an amniocentesis that diagnosed Down Syndrome. At 20 weeks gestation, she was urged to terminate, and the doctor cited "quality of life" over and over.
There are SO many things here that bother me. First, I cannot imagine terminating a pregnancy at 20 weeks. The baby is active and moving around; you've heard her heartbeat. I'm madly in love with my babies by 20 weeks, and to pull one from me at that point would remove my heart and leave me hollow.
Then there's the "quality of life" comment. Who determines quality of life? Not to mention, there's no way of telling what a baby's quality of life will be, Down Syndrome or no.
And consider this: if they find the gene that causes alcohol and other addictions, will we abort for that? The drunk on the sidewalk has a heck of lot lower "quality of life" than most adults with Down Syndrome that I've seen. You could probably argue that a person with Down Syndrome is a drain on societal resources, but ... Hey! Wait a minute! Alcoholism and drug addiction are at least equally a drain! Think about the losses to DUI or the many people in rehab or other programs complements of the State.
But many people with addictions overcome them, you argue, and I agree. In my family, we have a number of productive, responsible adults who spent a decade or so struggling with alcohol before they learned how to control the urge. Heck, Mars is an alcoholic, though he hasn't had a drink in more than 20 years. But every one who knows him would say he is a very productive and respected member of society, and the idea of aborting him is laughable! He just needed to understand his particular weakness, and learn the coping skills to deal with it.
Hmmm. Much like Girly Girl. She's enormously gifted, but we do have to teach her how to overcome her weaknesses.
Actually, that's true for all of us. All of us have genetic flaws, and the human experience is learning to overcome them. Most of us don't learn until adulthood or later what some of those flaws are (heck, I was skinny until I started taking contraceptives when I got married, and it's been a losing battle since). People with Down Syndrome, on the other hand, are uniquely blessed to have an idea what their weaknesses might be early enough that conscientious parents can start teaching them from infancy. And learning to overcome one's weakness actually inspires a higher quality of life. There's that core of satisfaction when you tackle something difficult and succeed.
Frankly, I'm not sure it's the child's quality of life the doctor meant, and indeed, other relatives of the mother-to-be in story #2 said so, in so many words.
She writes, "(My husband) and I enjoyed being active, loved traveling and exploring new places. My parents were afraid our lives would be drastically altered with a seriously disabled child."
I just had to laugh. This was their first child. Show of hands: everybody who has a child, raise your hand if your life was "drastically altered" when the baby was born. See those hands? It's everybody. Yep, all of us. Nobody travels as much or is as active after the baby is born, disabled or otherwise.
But the main reason I was so upset by the doctor's pressure to terminate is that I have a child with Down Syndrome. I know many other parents who also do. And without exception, the parents I've met have felt their child truly was a gift. Knowing what I know now, if I could go back and ... oh, say, not have sex the night she was conceived, I wouldn't change anything. I'd go with joy to husband and probably have one of those brain-exploding experiences that are so beautiful I weep afterward.
I asked my friend Google how many parents terminate a pregnancy if Down Syndrome is diagnosed, and he said, 92 percent. And it's a National Library of Medicine/National Institute of Health website, so I can't just deny the stats.
I found myself heavy-hearted, grieving for the parents who've thrown away this great gift only because no one told them what a gift it was.
I'm grateful Soper has published these stories. They'll help grieving parents move more quickly into acceptance. Perhaps they'll help wavering parents-to-be see the other side of the picture, the one doctors rarely mention.
But what I really hope is that people outside the DS community will read Gifts too. People who aren't even pregnant, or planning to be. These kinds of stories--and our children, living happy, productive lives--can change the way others think. If more people hear the joy of parents like these (parents like me!), there will be less misinformation, less fear and anxious pressure, and more clear-headed ability to make decisions.
There may well be good, solid reasons to terminate a pregnancy at 20 weeks, but in my opinion (my educated opinion), a simple diagnosis of Down Syndrome isn't one of them.
The next time I post, I'll tell my story, introduce you to the particular gift Girly Girl is in my life.
It's an amazing book, and I wish I'd had it when Girly Girl was born. I was so hungry both for information and for hope. Her birth felt like a death knell to my dreams (heck, I'd be caring 24-7 for a disabled daughter!). Not to mention a huge burden for the poor, tiny newborn.
This book presents the perspective I've come to have. "Your life will have flashes of color you never knew possible." Already I'm in grateful tears, and that's just the first line of the Forward, written by Martha Sears, wife of the famous pediatrician Dr. Sears (and apparently, mother of a child with Down Syndrome--something I did not know).
But story #2, "What to Do with a Boy?", is the one that pierced me. Abnormalities at an ultrasound led to an amniocentesis that diagnosed Down Syndrome. At 20 weeks gestation, she was urged to terminate, and the doctor cited "quality of life" over and over.
There are SO many things here that bother me. First, I cannot imagine terminating a pregnancy at 20 weeks. The baby is active and moving around; you've heard her heartbeat. I'm madly in love with my babies by 20 weeks, and to pull one from me at that point would remove my heart and leave me hollow.
Then there's the "quality of life" comment. Who determines quality of life? Not to mention, there's no way of telling what a baby's quality of life will be, Down Syndrome or no.
And consider this: if they find the gene that causes alcohol and other addictions, will we abort for that? The drunk on the sidewalk has a heck of lot lower "quality of life" than most adults with Down Syndrome that I've seen. You could probably argue that a person with Down Syndrome is a drain on societal resources, but ... Hey! Wait a minute! Alcoholism and drug addiction are at least equally a drain! Think about the losses to DUI or the many people in rehab or other programs complements of the State.
But many people with addictions overcome them, you argue, and I agree. In my family, we have a number of productive, responsible adults who spent a decade or so struggling with alcohol before they learned how to control the urge. Heck, Mars is an alcoholic, though he hasn't had a drink in more than 20 years. But every one who knows him would say he is a very productive and respected member of society, and the idea of aborting him is laughable! He just needed to understand his particular weakness, and learn the coping skills to deal with it.
Hmmm. Much like Girly Girl. She's enormously gifted, but we do have to teach her how to overcome her weaknesses.
Actually, that's true for all of us. All of us have genetic flaws, and the human experience is learning to overcome them. Most of us don't learn until adulthood or later what some of those flaws are (heck, I was skinny until I started taking contraceptives when I got married, and it's been a losing battle since). People with Down Syndrome, on the other hand, are uniquely blessed to have an idea what their weaknesses might be early enough that conscientious parents can start teaching them from infancy. And learning to overcome one's weakness actually inspires a higher quality of life. There's that core of satisfaction when you tackle something difficult and succeed.
Frankly, I'm not sure it's the child's quality of life the doctor meant, and indeed, other relatives of the mother-to-be in story #2 said so, in so many words.
She writes, "(My husband) and I enjoyed being active, loved traveling and exploring new places. My parents were afraid our lives would be drastically altered with a seriously disabled child."
I just had to laugh. This was their first child. Show of hands: everybody who has a child, raise your hand if your life was "drastically altered" when the baby was born. See those hands? It's everybody. Yep, all of us. Nobody travels as much or is as active after the baby is born, disabled or otherwise.
But the main reason I was so upset by the doctor's pressure to terminate is that I have a child with Down Syndrome. I know many other parents who also do. And without exception, the parents I've met have felt their child truly was a gift. Knowing what I know now, if I could go back and ... oh, say, not have sex the night she was conceived, I wouldn't change anything. I'd go with joy to husband and probably have one of those brain-exploding experiences that are so beautiful I weep afterward.
I asked my friend Google how many parents terminate a pregnancy if Down Syndrome is diagnosed, and he said, 92 percent. And it's a National Library of Medicine/National Institute of Health website, so I can't just deny the stats.
I found myself heavy-hearted, grieving for the parents who've thrown away this great gift only because no one told them what a gift it was.
I'm grateful Soper has published these stories. They'll help grieving parents move more quickly into acceptance. Perhaps they'll help wavering parents-to-be see the other side of the picture, the one doctors rarely mention.
But what I really hope is that people outside the DS community will read Gifts too. People who aren't even pregnant, or planning to be. These kinds of stories--and our children, living happy, productive lives--can change the way others think. If more people hear the joy of parents like these (parents like me!), there will be less misinformation, less fear and anxious pressure, and more clear-headed ability to make decisions.
There may well be good, solid reasons to terminate a pregnancy at 20 weeks, but in my opinion (my educated opinion), a simple diagnosis of Down Syndrome isn't one of them.
The next time I post, I'll tell my story, introduce you to the particular gift Girly Girl is in my life.