i re-posted this from my friend’s blog, www.oceansofjoy.wordpress.com. i thought it was especially poignant and timely, especially with an important election coming up. i hope you will take the time to read it. she is the friend who recently had a baby born with down syndrome, so this is an issue close to her heart and mine…
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.
Avivah
Oct 31, 2012 @ 11:40:00
Yes, I think that we live in a fast-paced world. Living with children who have autism or Down’s makes us slow down. I have done a lot of soul searching personally as I live with more than one child with issues, but I believe that the quiet retreat from a too demanding world to work at home to be with them to home school is not a choice I would have normally made. However, this choice has turned out to be perfect for me. I agree that the world is very unkind to children with disabilities and even to the families who love them and care for them. However, I think there is much to be learned in this journey for those who choose to make the journey. For those who abort, it may very well be that the journey is too much for them. It takes a lot of inner strength to withstand the staring and the criticism, the lack of celebration and the loneliness, which are very real. I can’t fault someone who does not feel up to this task. Still, the world would be a better place if people could get beyond always seeing what they expect to see to seeing what is really there. One of my sons has a nice saying for this. “In ancient Greece, the village fathers would throw these deformed children from a cliff or leave them to die. In modern times, I think we would be much better off without the people who feel it is their right to determine who should live and who should die. The person who thinks they know who should get tossed off the boat is the one I would toss off the boat.”
Oct 31, 2012 @ 12:16:52
while I respect the wishes of anyone wanting to bring a child into this world at any cost, and I might make the very same decision myself, I must remind you that if a woman does not want to do this there always has been and will always be an illegal and dangerous method for her to use. The Roe vs. Wade law allows women to do this safely and legally. Believe me reversing Roe will not bring you the results you are looking for, no matter how good your intentions are. I am old enough to remember the days when women bled to death in dark and filthy apartments. This was the reason for the law to legalize abortion.
Oct 31, 2012 @ 14:12:51
I am applauding ( I do this often when I am confronted with truth, love and beauty ) the sheer beauty of your words, Julie and Understatedbeauty! (” toss [them] off the boat”,indeed! )
In 1982 I began to miscarry in my 8th month. I was rushed to a hospital in Galveston, Tx, where they commenced with a brutal exam, scan and judgement. They told me, “See ( as they pointed to the sonogram picture ), he is deformed. It’s better if he dies.”
Those words hit me like a physical blow! Who was this person to decide if my child was worthy of coming into this world or not??? She prescribed some very strong pills tha twould help to abort the child and gave me one before I left the hospital. I was in shock. I loved this baby ( which truly is a spiritual being with a consciousness that supercedes a biological age ) and told my husband I was NOT going to abort my child….no matter what challanges he might have.
Maybe that was a selfish decision on my part but all that I knew is that the love that I felt for this being was one that I cannot express with language. It was an overwhelming feeling of bliss to know that soon I would get to hold this baby in my arms.
My son was born completely “Normal” ( whatever that is ). He had all of his toes, fingers and limbs. He would be considered “perfect” by this infantile and materialistic society. He was precocious, talkative and very adventureous. I loved him above all things. As he grew he became what society would consider “handsome” and his popularity began to soar….but his home life was depressing so he became depressed ( something society considers “ugly” and in need of supressing ). He began to act out and get involved with the “wrong crowd”. He was seperated from me so became more depressed and in his depression he sought out things that could help him manage his anger and depression. 15 years later he is still self “medicating” and lost….but I love him above all things. So it matters not if a body is missing a digit or limb, or if the brain has been wired differently than anothers, because we are all spiritual beings having a physical existence and there are multiple challenges that we all face irregardless of how chiseled our nose is or straight and artificially white our teeth are.
Life is about Love…..that is what is real and worthy yet we live it in a way that completely disregards the sanctity of life. We glorify the physical aspect of life and demean anyone who does not possess the qualities society values. I have asked myself many times, “Who sets these standards? Who gets to say who or what is valuable?” I know it was not I.
Who gets to set social standards? Maybe the important question is “why would we accept it”?
I made a decision born out of Love all those years ago and no matter how events have led us to this place in this sacred journey I have come to only one conclusion. If I had the opportunity to do this life all over again…would I make the same choice to become a mother……knowing all of the heartache and angusih I and my children would experience? Absolutely.
Life is a beautiful and sacred journey and beauty is what dwells within the soul.
Thanks for sharing your story with those of us who know so little about
T21.
Oct 31, 2012 @ 14:30:57
what a beautiful comment- thanks for sharing your story…
Oct 31, 2012 @ 14:33:11
yep- people will always do sketchy and irresponsible things. that doesn’t change one bit of how special or sacred each life is. sorry.
Oct 31, 2012 @ 14:33:58
that’s food for thought, isn’t it???
Oct 31, 2012 @ 16:31:56
joshua kyle was delivered at 30 weeks ….. after his mother was physically abused by the boyfriend. joshua kyle was stillborn …. having died of a skull fracture in utero. at 30 weeks, he was a beautifully formed “little person” …. fingers, toes, delicate ears, slightly upturned nose, i held him only a very brief time …. my first grandson.
the impact upon my daughter – cradling her infant son whose life was snuffed out ….. we realized just how precious life truly is.
~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~
i so very much like the statements about a person with a disability – that the problem is more that a disability isn’t incompatible with life as much as it’s incompatible with society. profound indeed. a concept that needs to be understood, so that change can happen. i think, it is getting better …….. 50 years ago, a child with downs syndrome was either institutionalized or hidden away at home. 50 years ago, a child with autism was never talked about. any form of mental illness? hushed up, swept under the carpet …. whispered about behind backs and over backyard fences …. with looks of pity now’n'then directed at the family. so, yes. it IS improving. albeit far too slowly. as has been so eloquently stated already – what person does NOT face an array of challenges? of struggles? of uphill climbs and downhill slides in the course of a lifetime???
until it is accepted that “it” is not “fetal tissue” …… not “just a fetus” ……. but a baby. a child who wil grow, learn, face challenges … whether “perfect” or with a “disability” …… still a person. until then – people will continue to look at aborting “imperfection” as not much more than pulling an unwanted wisdom tooth. just getting rid of that which could cause future pain, discomfort.
*sigh*
Oct 31, 2012 @ 19:31:25
Thank you Grace for reminding us that is why we have the law. I never took you Julie as a right wing santicmonious one. I am a bit taken back. From my perspective although I applaud anyone raising a special needs child I have to wonder isn’t it bit irresponsible to have ten children in this day and age and continue to have children to an age that you are at risk of having children who are mentally handicapped. But that is why we have a right to choose at least for now, to use birth control or not, bring children in this world who we may not be able to care for if we had them to old or not. Don’t worry, your friend’s judgemental blog and your comments are too much for me.. Ironic that this is on a blog that we started to follow because someone felt persecuted about her front yard garden..
Nov 02, 2012 @ 08:55:07
You know, Hemmy, it just struck me like a bolt of lightening as I was reading this horrible story of Jeremy Kyle. My ex mother-in-law was kicked in the stomach by her husband when she was 8 months pregnant with life. As I read the word “stillborn” ( a word that was used in the case of my ex-mother-in-law as well ) I had an epiphany! This is murder. What these men did to their own children is nothing more than murder yet we call it something as benign as “stillborn”. How convenient for these mysoginists! They get to take a life through an act of violence and just walk away from it as though no one was affected.
This story makes me physically ill. I can think of nothing else to say on this subject. Thanks for sharing.
Nov 03, 2012 @ 20:19:29
jamie ……… thank you. for your words of understanding. for your epiphany.
at the time this happened, we lived in a small community way up in the mountains ….. and ….. the DA filed charges of manslaughter against the young man for doing EXACTLY what your ex MIL’s husband did – a kick in the stomach which resulted in the death of the child. it would have been a monumental court case, had it gone through a full trial. it didn’t. he walked away with a “slap on the wrist” and the admonition “naughty, naughty, shouldn’t do!” sheeeeeeeeeesh. the DA fully believed that a murder had, in fact, taken place and went unpunished.