Day 31: Blogging for the 31 For 21 Challenge for Down Syndrome
Awareness
So I started the day with the news that the UK is rolling out a new Prenatal Genetic Test what will prove 99% effective in determining whether the fetus has an abnormal chromosomal defect. And when you realize this means that the mother could avoid the more invasive testing that leads to the potential miscarriage in 1% of the tests, that's the god part. Any baby loss is too many losses. So that would be great for potential parents. But here’s where things get dicey. You see, the implications are extremely damaging to our Down syndrome community, and potentially, could wipe out a whole generation of our children. As it is stands, 90% of babies are aborted if they show any kind of chromosome abnormality; in fact, some healthcare providers encourage a patient that they are still young and could try again. With that in mind, the press release regarding this new prenatal test uses the reasoning that the life of a person with Down syndrome is not worth the lifetime cost of his or her care. By making this test a part of all early testing, any parent that chooses life must in essence be willing to take on the lifetime cost of their child to adult, because the government will be able to bow out of the care…they offered the test to rid you of the costly child after all. Completely implausible? Oh how I wish. In 2012, an Oregon couple sued their hospital for $7 million to cover the cost of raising their child with Down syndrome because they were surprised by her diagnosis. Sadly, they were awarded 2.9 million. Lucky them, and oh how much love that little girl doesn’t get in that money grubbing household. What a slippery slope we’re now falling down.
If a court will allow for payouts for wrongful birth, then we are already in trouble. That a test will provide 99% accuracy suggests that there will be even fewer births of extra chromosomes and fewer surprises. Arguments are being made that taking the life of a child at birth when a surprise diagnosis should be considered as well:
Yes, here in the States, babies with Down syndrome are provided some protection, not so in places like the Netherlands. If the UK convinces parents that a child with Down syndrome is too much of a drain on the economy, there won’t be a need for this protocol because the child will never get a chance to be born.
As if the medical aspects of Bradley’s care aren’t enough, there are times I experience real fear for my son, and real fear for his future. And I admit that sometimes I wonder if there will be others like him or if he’ll just be the last one in a line of others with an extra chromosome. And even as I fear, I feel such an innate sense of gratitude to the parents that came before me, the ones that had no chance of knowing about the diagnosis before the baby came, the ones that were told to leave the baby to die, but refused. The ones that were told that the baby could go to a place and never been seen or heard from again, and refused. The parents that viewed their child as lacking in what he or she could do, but refused to do anything but love them and accept them as their own. I have a great amount of respect and gratitude to these parents. As they watched more and more types of genetic tests be produced they must have been worried about the eradication of Down syndrome from the world too; and yet, my son is still here. One can only hope that a greater sense of mankind and the true sense that every person has a place and a reason to be here will prove enough to bring yet another generation of babies with Down syndrome into the world.
I’m not even above bribing people to keep my son safe. Every day, research is making connections between Alzheimer’s disease and understanding it thanks to the genetic make-up of the brain of someone with Down syndrome. We are also learning a great deal about tumors vs. hard cancers; the difference is that our loved ones with Down syndrome aren’t creating hard tumors. Our kids suffer with blood disorders and cancers like Leukemia on a higher percentage but with a higher survivability as well. Perhaps before we go so far that we eradicate the syndrome, those in the world of medical research need to take a closer look and find a way to help us “Normal” chaps have a fighting chance.
In the Down syndrome community, acceptance and awareness are preached constantly. But while most are chasing the Inclusion dream so they can brag about little Billy or Susie being as normal as possible, we’re just over here trying to teach Bradley to get along with his life. And I think for me, I get more worried about Eugenics and eradication. I worry about his life being the last, and I worry about the Eugenics that was created by Hitler, ever coming to play again in my son’s lifetime, or my own. As for Bradley? He’s going to get there, one small little step or one mighty leap at a time. His timeline is his own and he will follow the path he is supposed to travel and his dad and I are just going to keep up and support him along the way. He’s going to get there, we know that for sure. And as much as all this stuff can really get to me and way me down, even make me feel a little panicky as I research, I sometimes get a nice little counter balance from life to help me on my way.
Today is Halloween, and we took the kids Trick or Treating. Not one time tonight was anyone mean to him, or dismissive. People were kind, people made the effort to talk to him, to be excited by his costume and how cute he was, to tell him that. People handing out candy were patient, and gave him high fives, or knuckles. Bradley said “Hi!” and waved to everybody he passed, and after they were behind him he turned and said “Bye!” and waved. Every single one said Hi and Bye to him too, smiling at him; engaging with him, treating him like any other little guy running around out there. When he got overwhelmed, and really tired, he retreated to his stroller. He still waved and he still practiced his talking. He pointed to scary costumes and said Hi, and he pointed to cute babies and said “Ahhh.” Some of the Candy givers would give candy to his sister for him, or bring it to him themselves, and get knuckles in return. And through it all, he signed “thank you.” And he would smile, and sign “happy.” So many happy signs! So many thank you signs! Him and me!
We weren’t out all that long. We weren’t really out for all the candy, we have a ton here at the house because only three kids came to our house other than our own three. We went to create the memories, to walk the streets with our girls that are growing so fast and starting to say good-bye to the tradition of trick or treating for themselves and rolling onto being candy givers, or taking their brother out. We went to be with our little guy and watch him to see how much he has grown and changed over the year since last Halloween. We went to be a family. We went to remind ourselves that our little fivesome is perfect in our numerous imperfections, and that we are doing just fine with all of it. We have hormonal and sometimes crazy girls and we have a little guy that sometimes finds his frustration at being unable to speak a huge wall to climb, but through it all we have each other. We have this life, this one life that we share together and we are making that life the one that counts.
Bradley is a gift. We didn’t know what he was bringing with him when he arrived, and through the anguish of letting go of what we expected we have come to embrace the miracle that he is, for all of us.
Tonight is the last night of the 31 For 21 Challenge to Bring Awareness and Acceptance of Down Syndrome. Tomorrow is the start of a new month and a new Awareness battle. Our fight for Bradley never ends though, we’re always working toward his better tomorrow and you are always invited on the journey! Happy Halloween! Thank you for taking this journey with me this month, and throughout this little boy’s lifetime. Your support for him, your support for the girls, our family, and your support for this crazy mom’s rambling posts never goes unappreciated. Thank you all! God Bless you on your journey, may your miracles be many, and your troubles be small!
So I started the day with the news that the UK is rolling out a new Prenatal Genetic Test what will prove 99% effective in determining whether the fetus has an abnormal chromosomal defect. And when you realize this means that the mother could avoid the more invasive testing that leads to the potential miscarriage in 1% of the tests, that's the god part. Any baby loss is too many losses. So that would be great for potential parents. But here’s where things get dicey. You see, the implications are extremely damaging to our Down syndrome community, and potentially, could wipe out a whole generation of our children. As it is stands, 90% of babies are aborted if they show any kind of chromosome abnormality; in fact, some healthcare providers encourage a patient that they are still young and could try again. With that in mind, the press release regarding this new prenatal test uses the reasoning that the life of a person with Down syndrome is not worth the lifetime cost of his or her care. By making this test a part of all early testing, any parent that chooses life must in essence be willing to take on the lifetime cost of their child to adult, because the government will be able to bow out of the care…they offered the test to rid you of the costly child after all. Completely implausible? Oh how I wish. In 2012, an Oregon couple sued their hospital for $7 million to cover the cost of raising their child with Down syndrome because they were surprised by her diagnosis. Sadly, they were awarded 2.9 million. Lucky them, and oh how much love that little girl doesn’t get in that money grubbing household. What a slippery slope we’re now falling down.
If a court will allow for payouts for wrongful birth, then we are already in trouble. That a test will provide 99% accuracy suggests that there will be even fewer births of extra chromosomes and fewer surprises. Arguments are being made that taking the life of a child at birth when a surprise diagnosis should be considered as well:
For several years now, the Netherlands has
permitted what is called “The
Groningen Protocol.” The Protocol
describes when medical professionals may actively kill newborns who meet
certain criteria for medical futility and fragility. A child born with Down
syndrome was one of those killed by the Groningen Protocol even before it was announced…In
the United States, there is a federal law that is supposed to prohibit the
actions of Gosnell and the Groningen Protocol from happening. It is called the
Born Alive Infant Protection Act or BAIPA. http://www.downsyndromeprenataltesting.com/gosnell-after-birth-abortion-and-down-syndrome/
Yes, here in the States, babies with Down syndrome are provided some protection, not so in places like the Netherlands. If the UK convinces parents that a child with Down syndrome is too much of a drain on the economy, there won’t be a need for this protocol because the child will never get a chance to be born.
As if the medical aspects of Bradley’s care aren’t enough, there are times I experience real fear for my son, and real fear for his future. And I admit that sometimes I wonder if there will be others like him or if he’ll just be the last one in a line of others with an extra chromosome. And even as I fear, I feel such an innate sense of gratitude to the parents that came before me, the ones that had no chance of knowing about the diagnosis before the baby came, the ones that were told to leave the baby to die, but refused. The ones that were told that the baby could go to a place and never been seen or heard from again, and refused. The parents that viewed their child as lacking in what he or she could do, but refused to do anything but love them and accept them as their own. I have a great amount of respect and gratitude to these parents. As they watched more and more types of genetic tests be produced they must have been worried about the eradication of Down syndrome from the world too; and yet, my son is still here. One can only hope that a greater sense of mankind and the true sense that every person has a place and a reason to be here will prove enough to bring yet another generation of babies with Down syndrome into the world.
I’m not even above bribing people to keep my son safe. Every day, research is making connections between Alzheimer’s disease and understanding it thanks to the genetic make-up of the brain of someone with Down syndrome. We are also learning a great deal about tumors vs. hard cancers; the difference is that our loved ones with Down syndrome aren’t creating hard tumors. Our kids suffer with blood disorders and cancers like Leukemia on a higher percentage but with a higher survivability as well. Perhaps before we go so far that we eradicate the syndrome, those in the world of medical research need to take a closer look and find a way to help us “Normal” chaps have a fighting chance.
In the Down syndrome community, acceptance and awareness are preached constantly. But while most are chasing the Inclusion dream so they can brag about little Billy or Susie being as normal as possible, we’re just over here trying to teach Bradley to get along with his life. And I think for me, I get more worried about Eugenics and eradication. I worry about his life being the last, and I worry about the Eugenics that was created by Hitler, ever coming to play again in my son’s lifetime, or my own. As for Bradley? He’s going to get there, one small little step or one mighty leap at a time. His timeline is his own and he will follow the path he is supposed to travel and his dad and I are just going to keep up and support him along the way. He’s going to get there, we know that for sure. And as much as all this stuff can really get to me and way me down, even make me feel a little panicky as I research, I sometimes get a nice little counter balance from life to help me on my way.
Today is Halloween, and we took the kids Trick or Treating. Not one time tonight was anyone mean to him, or dismissive. People were kind, people made the effort to talk to him, to be excited by his costume and how cute he was, to tell him that. People handing out candy were patient, and gave him high fives, or knuckles. Bradley said “Hi!” and waved to everybody he passed, and after they were behind him he turned and said “Bye!” and waved. Every single one said Hi and Bye to him too, smiling at him; engaging with him, treating him like any other little guy running around out there. When he got overwhelmed, and really tired, he retreated to his stroller. He still waved and he still practiced his talking. He pointed to scary costumes and said Hi, and he pointed to cute babies and said “Ahhh.” Some of the Candy givers would give candy to his sister for him, or bring it to him themselves, and get knuckles in return. And through it all, he signed “thank you.” And he would smile, and sign “happy.” So many happy signs! So many thank you signs! Him and me!
We weren’t out all that long. We weren’t really out for all the candy, we have a ton here at the house because only three kids came to our house other than our own three. We went to create the memories, to walk the streets with our girls that are growing so fast and starting to say good-bye to the tradition of trick or treating for themselves and rolling onto being candy givers, or taking their brother out. We went to be with our little guy and watch him to see how much he has grown and changed over the year since last Halloween. We went to be a family. We went to remind ourselves that our little fivesome is perfect in our numerous imperfections, and that we are doing just fine with all of it. We have hormonal and sometimes crazy girls and we have a little guy that sometimes finds his frustration at being unable to speak a huge wall to climb, but through it all we have each other. We have this life, this one life that we share together and we are making that life the one that counts.
Bradley is a gift. We didn’t know what he was bringing with him when he arrived, and through the anguish of letting go of what we expected we have come to embrace the miracle that he is, for all of us.
Tonight is the last night of the 31 For 21 Challenge to Bring Awareness and Acceptance of Down Syndrome. Tomorrow is the start of a new month and a new Awareness battle. Our fight for Bradley never ends though, we’re always working toward his better tomorrow and you are always invited on the journey! Happy Halloween! Thank you for taking this journey with me this month, and throughout this little boy’s lifetime. Your support for him, your support for the girls, our family, and your support for this crazy mom’s rambling posts never goes unappreciated. Thank you all! God Bless you on your journey, may your miracles be many, and your troubles be small!
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