Why we are so scared of Down syndrome.
Last year, there was a story going ‘viral’ on the internet, one that gave many of us who call ourselves #theluckyfew a pit in our stomach. One that often comes when the diagnosis of Down syndrome is in the headlines. This time, a celebrity couple who have chosen to live their lives on social media through posts and vlogs was told at their 20-week ultrasound checkup that their baby had a two-vessel umbilical cord, dilated kidneys, and could possibly have Down syndrome. How the Today Show and other media outlets used this ‘story’ is what is making the need for Jack’s Basket that much more evident.
This isn’t a blog post about how this couple responded; it’s recognizing how media, the power of words and assumptions, and the world’s response have contributed to why we are so scared of a Down syndrome diagnosis.
I get it. I get the fear that comes when you’re given news that’s unexpected. My family has received unexpected news many times throughout our lives, not to mention that the last few years have included addiction, recovery, miscarriage, death by suicide, a liver cancer diagnosis, and the news that my son has Down syndrome. So much shock, confusion, and fear of the unknown in each of these circumstances.
I can also honestly tell you that in 2013, I hoped that the nurse practitioner that walked into the room, where my husband was sitting alone with our new baby (while I was still in recovery) and abruptly told him this life-changing diagnosis of my son having Down syndrome, was wrong. I hoped the official test confirming this suspected diagnosis would tell us our lives would be what we knew and planned for. We are often scared of what we do not know. Oh how thankful I am that they weren’t wrong.
Because…Jack.
What happened next is what felt like the punch and what makes life with a child with Down syndrome the hardest and challenging part of the journey.
The articles read the words ‘healthy’ and ‘good news’. I read the ignorant comments and reactions. And then saw the follow up story by the Today Show, ‘Uplifting update after pregnancy complications’…A news ‘story’ sharing the ‘answered prayers’ expressing great relief.
The world was rejoicing over the fact that the baby doesn’t have Down syndrome.
Punch in the gut. Your answered prayers are that your baby will not be like my son.
And now people are singing praises of God because there aren’t any more ‘complications’? Is this the same God people are quick to forget, mock, or deny when life is not affected by such ‘devastating’ news? Please.
“Baby is healthy, baby doesn’t have Down syndrome.”
Just to clarify, a baby with Down syndrome doesn’t = unhealthy. Anyone who knows about this unique genetic condition or who is blessed by a person who has it knows this isn’t a disease. A baby with Down syndrome may have health concerns and/or a heart defect, but the diagnosis itself doesn’t define a baby as unhealthy.
As I wrestled with my feelings and fears in the beginning, I recognized that many things contribute to our grief over what we thought our lives would look like. But I came to understand that the grief of who I thought my child would be was easily forgotten when I discovered who he was uniquely created to be. Those feelings were also impacted by the grief of how the world doesn’t accept that my child is different, whether his life should be celebrated and valued, or bluntly put, existent. And from this news report, I can assume the world is sad for me.
There are so many thoughts rolling through my head…which, quite frankly, have been stirring in my heart and mind for years. I haven’t had much time to sit and write a blog post lately, because I’m working hard to help medical providers recognize that when they share the diagnosis of Down syndrome, they should share it without their personal bias. Example: Your hopes and dreams are over for your child because he has Down syndrome. (2018)
“I have bad news, your baby has Down syndrome.”
Again, just to clarify, Down syndrome is not a bad thing. It’s unexpected.
A question I often ask myself is, “How are families loving their lives with their baby with Down syndrome, yet the way the diagnosis is given is as if it’s devastating news”? Why such a disconnect? How does that impact a parent’s ability to accept their new life? Why does research say that 99% of individuals with Down syndrome love their lives? I sure know a lot of people who don’t have Down syndrome who don’t love their lives. Maybe we could learn a little something from individuals with Ds.
Let’s also not forget that 50 years ago in our beloved country, if I was to deliver a baby with Down syndrome, a person in a position of power, my doctor, would so directly (as if a fact), tell me not to take my ‘Mongloid”, ‘Retarded’, or ‘Down syndrome child’ home, but put ‘them’ in an institution, because “they” won’t do anything.
This contributes to why we are so scared of Down syndrome today.
My heroes are the parents who took their CHILD (not diagnosis) home and raised him or her just like any other child. Saw the potential, blazed the trail for all the families like mine, seeing their child as a gift and not the so-called ‘burden’ that has labeled them for decades.
Over the past six years of learning more about my son and meeting hundreds of new families that are raising a child with Down syndrome, those words have gone from a question to a statement.
Why we are so scared of Down syndrome.
“Your baby has Down syndrome, do you want to keep her?”
“Your life will be filled with pain and suffering.”
These statements, these assumptions, these moments of celebration of results that the baby doesn’t have Down syndrome, are contributing to the idea that it is okay for the world to think that you don’t have to have a baby with Down syndrome.
So as our world is trying to become more accepting of ALL people, I ask you, really? The most dangerous place for a preborn baby with Down syndrome is a mother’s womb, and these babies are discriminated against from the very beginning. I want a baby, but not THAT baby. Not to mention that now the conversation is happening even before conception, with an infertility doctor defining an embryo as not viable if the genetic makeup includes an extra 21st chromosome.
As I mentioned earlier, I can empathize with receiving unexpected news. We all respond differently to circumstances, and a lot of that is impacted by our life experiences up until that time. But I can’t help but point out that the view and opinions of others heavily impacts and influences our response.
“You won’t want to connect with other parents, because they will persuade you differently.”
But before this narrative around Down syndrome was created, society had impacted how we view (measure) others. We do it every day, almost every conversation. Emphasizing WHAT we do, rather than WHO we are. Compiling the notion that WHAT a person accomplishes brings value to life, versus WHO you were created to be. Easily defining and determining if a life has worth or is worthy of it, listing accomplishments and achievements, labeling each other with words of smart and gifted, instead of attributes of caring, compassionate, and loving. But really, who needs those anyway? The world has too much love, right?
If you’re a parent and have never had to defend your child’s life, please know that there are parents every day having to do so, because we are so scared of Down syndrome, which has contributed to a choice. There is also the space in which, when there are difficult moments on this journey, I hesitate to share (with those not close to me) because it’s often assumed that it’s hard because our child has Down syndrome, and nothing to do with the fact that raising kids and parenting are hard. But we signed up for this, right?
Here’s a glimpse into one mom’s experience (which is all too common).
A few weeks ago, I ran into an old co-worker/acquaintance. As she came up to me, smiling, she asked if she could see B. I replied, “Of course.” I was told how beautiful she was and that she enjoys seeing pictures of her, and how lovely it was to see her in person.
Followed by, “Are you happy you chose life for her?”
I immediately gasped, thinking to myself, ‘Am I hearing this right? Was I JUST asked this question?’ I responded, “Of course, there was nothing to question and never a thought.”
Followed by her, “Well, that’s good. Life will be really difficult for you. I’ll be cheering for you. Happy Holidays.”
NO parent should ever have to experience this. NO parent should have to defend that their child deserves life.
This is why you will see so much advocacy from families. How does this type of interaction and the way the world views individuals with Down syndrome make the journey hard? How much of this journey is hard because an individual with Down syndrome is not respected, given opportunities, and valued in society? How do these experiences influence the idea that it’s okay to have a choice for this life?
So we speak our truth. That the life and impact of our child has made us better. Choosing to live our lives so publically to cultivate change, vulnerably sharing our hilltops and valleys of parenthood, so that one day the world won’t rejoice over the fact that the baby doesn’t have Down syndrome. So that the life and impact of future babies will be welcomed, celebrated, and respected like you and I were.
That is newsworthy.
Do you know a baby recently diagnosed with Down syndrome? Request a Jack’s Basket on our website: www.jacksbasket.org
4 Comments
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Josh
We got the info at 16 weeks and it rocked out world. My wife’s OB told her to call me right then and there. She did and was crying asking what we are going to do. All I wanted to know is he healthy. He was except for his AV canal defect that required open heart surgery. However, it did take me months of soul searching, crying, and anger to come to terms with Oliver’s diagnosis.
Long story short, he is almost 14 months, had a successful heart surgery, and is the light of my eye. He warms up every room that his is in with that wonderful smile. He says Dada over and over. He makes my tough days seem like nothing.
He is my hero and exactly who we needed.
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Katy
Thank you for sharing your amazing story.
We were told of our child’s diagnoses on day 3. Looking back Jacks Basket was the only thing that made sense. So thank you so much for all your kindness and for sending someone out to our home. I didn’t feel so alone after Jacks Basket came out.
At our hospital the genetic counselor had the nerve to say she was sorry before leaving our hospital room which I found to be rude. Later I confronted her of her comment and she had some excuse to her response.
Although society has come a long ways, they need to come even further. Why take a child out of the equation just because they have an extra chromosome? Makes no sense to me either.
For our family, our child has so much more to offer then we could of ever possibly imagined. The possibilities are endless with our son. He is amazing, he brings us so much joy, peace, laughter and love. Our love for him has helped him reach huge milestones.
Now if we can just get the rest of the world on board will be our life’s mission! That includes some family members who have chosen to avoid us since our child’s birth. There loss!
Our son will change lives and we know this because he has changed ours! ❤
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Uz
Here I am crying since 3 am and wondering why do I feel sad for my baby that has ds if I love him so much and he is perfectly healthy..so happy that I came across this story it totally explains the why!
Stephanie Muench
I too was scared and saddened that my granddaughter was born with Down Syndrome. I got down on my knees and broke down and cried and prayed. I was ignorant. I knew nothing about DS. I have learned so much from my granddaughter Ava. She is now 11 and has "rocked" our world. She has made me better. She has made all of us better.
Stephanie Muench