Sorry for the long delay in posting – my ds13 returned over a week ago from a month long visit in the US, and brought me a new (used) laptop with him. This was something I had been anticipating with great eagerness since my computer has been out of commission for two months. Ironically, the day he brought it home and I turned it on to use it for the first time, our internet service was cut off – when we registered for our phone and internet service, we authorized automatic deductions from our bank account. The internet service provider broke off from the phone company and now needs a separate authorization, but didn’t tell us – they just cut off our service! We figured out what happened when we tried to log on and got a message from the internet service provider informing us that we needed to take care of payments to have service. That took a week. It is so nice to finally be online and to have a computer again!!
Today is the Day 29 of the 31 for 21 blogging effort to raise awareness for Trisomy 21, also known as Down syndrome.
When I was in the NICU with Yirmiyahu, after the baby in the isolette next to him died, the next baby placed there was a very tiny preemie. He was born at 23 weeks, and being able to see what a baby that young looks like was amazing. He was so, so tiny but fully formed – he looked like a miniature baby. The length of his entire foot was probably about equal to the tip of my pinky finger. Looking at him and then at my baby, I thought about how babies at 23 weeks of pregnancy can still be legally aborted, and that most babies with T21 are aborted. Yirmiyahu is lucky to be one of just ten percent of babies with T21 who make it to this world.
When my computer went down a couple of months ago, I lost the sites I had bookmarked so I did a search to try to find a particular T21 site again. In the process, I came across a board for mothers who had terminated or were planning to terminate their babies with Down syndrome. It was difficult to read about so many women making this decision, and it was clear that this was a painful decision for many of them.
Something that many women wrote is that they felt it would be selfish of them to let their child live, to suffer from whatever challenges he would be born with. One woman who aborted her baby made a statement that I found very insightful. She had chosen to abort her baby even though there were no obvious health challenges in the prenatal screening other than T21, and wrote that she believes Trisomy 21 isn’t incompatible with life as much as it’s incompatible with society.
Isn’t that profound? And isn’t it true? The difficulties for our children with T21 don’t come primarily from the state of being born as they are – yes, there are physical and cognitive challenges that they will face. But being faced with challenges is something we all can look forward to – not one of us will go through our lives without significant tests in some areas. The real difficulty for a person with a disability comes from having to live in a world in which they are seen as inferior and incompatible. As a society we are so uncomfortable with differences, that many people see it as laudable to prevent a child who will be too different from being born.
I believe that something that helped me to easily accept the news that our baby had T21 was being the mother of nine other children of a range of ages. During the last nineteen years, I’ve learned that just every child is going to have his challenges, no matter how high his IQ or how robust his health. A typical child may be made fun of, struggle with self-esteem, have learning difficulties – just because they’re born typical is no guarantee of their performance at any point in life. However, when you have a typical baby, you’re congratulated – no one feels the need to tell you right after you’ve given birth that your child will one day face some kind of difficulties, though this is absolutely a fact. But when you have a baby with T21, instead of congratulations you get warned about all of the probable issues upfront by doctors with sad faces. This can be very depressing if you believe that doctors have all the information and all the answers. I don’t believe that doctors can know the potential of any child, and since I know every child will have challenges, hearing about our baby having some more easily predicted concerns didn’t frighten me.
The clear message that doctors project, whether spoken or not, is that your child is a problem. I’m not surprised that so many people choose abortion when faced with this attitude. But maybe our children being born a little different isn’t really the problem? Maybe the problem is a world in which it’s normal to believe that that people who are different don’t deserve to exist? Maybe children – and adults – with differences are sent to this world in order to make the world a more loving and accepting place, to remind us that we’re all inherently the same even when we look different?
When I was pregnant, I read a blog in which someone shared about someone who had been told that their baby had markers for T21 and aborted her. When the procedure was complete, they learned that their baby didn’t have Down syndrome, and the grief that they had aborted their healthy child was indescribable. This blogger wrote, but what about if their baby had T21? Would it then have made it more okay to have killed her? Does a child with Down syndrome deserve to live less because he may have health issues or cognitive delays at some point in his life?
Here’s a short and sweet video that I enjoyed - The Beautiful Faces of Children with Down Syndrome.
These children are our reminder that every single person has value and a purpose in being here, though their beauty and gifts are not often enough recognized in a world in which differences aren’t welcomed.