World Down syndrome Day – 2016 edition

It’s been a rough couple of years. From unemployment to starting a business, to spending sixteen excruciating days at the hospital while our son Jonathan battled a mystery illness to watching our daughter Charlotte struggle with a chronic disease, life (or if you prefer – insert another word) happened.

Outside our immediate family, we have seen close friends, neighbors and other family members suffer the shock of unexpected death as well as stage 4 cancer, traumatic brain injury, divorce, substance abuse, job loss and bankruptcy. I can see why this depressing litany may be enough to make you stop reading at this point, but please bear with me.

Please notice that none of the things that happened on that life (or if you prefer – insert another word) list included or came about because of Down syndrome. In our family, when we make a list of blessings and burdens, Down syndrome always makes the blessings list. Yet most people, when faced with the possibility of bringing a child with Down syndrome into this world put that prospect – and indeed that child – on the “insert another word” list. We know this because approximately ninety percent of women who know they are carrying a baby with Down syndrome choose to have an abortion.

The fact is most people think Down syndrome is something that can and should be prevented. Indeed, thanks to prenatal testing and abortion, Down syndrome is prevented nine out of ten times when mothers know ahead of time. Nine out of ten babies are not given the chance because of the belief that of all the things that could crop up on your “life list” at any given time, Down syndrome is definitely one that’s to be avoided. The thought is, that by not bringing that baby with the extra chromosome into the world, much emotional and physical pain and suffering will be prevented.

However, as I look over my personal “life list” from the last several years there are many things I obviously would have chosen not to be added, many things that have caused incredible pain and enormous suffering. And for those things, there was no test that could have been taken years ago to predict with certainty whether a loved one would have developed cancer, or would have collapsed suddenly and died or would have been chronically unemployed or bitterly divorced. Would I have chosen not to bring those people into the world knowing now the pain and suffering their lives have caused? Of course not. The point is, no one is immune from pain and suffering and Down syndrome does not necessarily equate with the two.

As I write this my son Jonathan is thirteen so I have had thirteen years (thirteen years, three months and twenty two weeks if we count down to the day we received the results of the amino) to get used to the fact that he was not the baby we had signed up for – not the baby we would have initially chosen to add to our list. I’m not saying his Down syndrome diagnosis didn’t first throw us into despair or that there haven’t been some tough days along the way for both he and for us as a family. But what kid doesn’t have their rough moments? What family doesn’t have their tough times? Again, all the prenatal testing in the world can’t prevent those.
A prenatal test I took in July of 2002 told me I was carrying a baby with Trisomy 21. What it didn’t tell me was that that baby would turn out to be a healthy teenager with a quick wit, infectious smile and great love for sports, dogs and music. It didn’t tell me Jonathan would be riding a bike, or skiing a mountain or learning about ancient Egypt like the rest of his class. It didn’t tell me he and my husband would attend sporting events together like many fathers and sons and that Jonathan would frequently end up on the Jumbo-tron. It didn’t tell me how much we would love him, how much he would love us or how much others would love Jonathan as well.

There were some who rationalized, if not fully encouraged, terminating the pregnancy in an attempt to try to save us from pain – to try to make sure Jonathan never made it to our “insert word here” list. Thank God we didn’t as Jonathan would not have had the opportunity to prove what a beautiful blessing he is to this often times ugly world.

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One Response to World Down syndrome Day – 2016 edition

  1. Trina says:

    Thank you for providing this update although I am sorry life has been rough for you. I cannot believe your Jonathan is now 13. As a student midwife (soon to return) I hope that stories such as yours will help me to support families as they adjust to not having the baby they imagined. I think perhaps I would like to work in the area of antenatal screening one day. I am very much pro choice but I think that information about Down syndrome is not always preventing in a way that actually supports an informed choice (or it is biased towards the negative). But thank you for sharing even in small ways your life with Jonathan.

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