As the parent of a child with Down syndrome, I am part of a unique community of mothers. We call ourselves, “Rockin’ Moms,” “The Lucky Few,” “Warrior Mothers.” We are a relatively small group of women who are experiencing life in such a collectively similar way that we have created and nurtured our own little community. It’s powerful and insightful and Down Right amazing!
Recently, a former olympian, Shawn Johnson, shared a pregnancy story, while she was in the midst of it. She shared there were some “possible complications” with the pregnancy and those medical complications were indicators of a genetic condition, specifically, Down syndrome. She and her husband said they would love the baby no matter what, but they and their followers were praying for “good news.” In a second piece of the story, they shared their “good news”: the genetic testing came back negative, yay, the baby was, “genetically healthy” and did not have Down syndrome.
Many of us mamas in this community were heartbroken by the delivery of this information, not the fact that their child doesn’t have Down syndrome. But by the words and intonation of the words and by the large platform by which it was shared.
Let me tell you why.
Prior to becoming part of this group, I knew nothing about Down syndrome. Well, I take that back, I understood there were cognitive delays and medical issues. The limited knowledge I had made me feel fearful, anxiety ridden and heartbroken when my baby received a prenatal diagnosis of Down syndrome. My first thought was, “Please Lord, I cannot lose another child.” (My first daughter passed away when she was 4 years old, she had a rare genetic anomaly, not Down syndrome).
Our maternal-fetal medicine doctor who we met to discuss this diagnosis made it sound like Down syndrome would result in major challenges in our lives as parents and it would be no quality of life for our child. I received no educational materials, no website address for research. Nothing but a look of pity.
I cried. And cried. I prayed that the information was not correct. All I wanted was the chance for my baby to be healthy and I believed that chance was dashed by Down syndrome — apparently so did Shawn Johnson.
When you are pregnant, the thing you hope for is a healthy child. You don’t care if it’s a boy or a girl, just that “the baby is healthy.” So, I do not begrudge Johnson for her feelings about a possible Down syndrome diagnosis. It’s not the baby you envisioned you would be having. You are afraid of medical complications for your child. I get it. Most of us get it, we have been there too. But, that’s where her story ends, a negative test for Down syndrome. They are wiping their brows, “Whew, that was a close call, prayers were answered.”
What they didn’t understand, and many of us don’t understand during a diagnosis discussion, is that Down syndrome is a genetic condition that can have virtually no medical complications or bring with it serious medical complications, and everything in-between. Furthermore, that same thing holds true to any human life. Some of us are destined to be medically healthy and some of us get tragically ill, and everything in-between. Sure, maybe it’s more likely to happen to a child with a genetic difference, but none of us should feel that the absence of a genetic condition makes us or our children impermeable to medical issues. And that’s kind of how this story came across.
Deeper than that, they have no idea the painful impact they have had on this community. Yes, we acknowledge that their feelings about a Down syndrome diagnosis are not unlike what many of us experienced when we found out with our own children: fear, disappointment, anger. But our stories continue after that news. And sharing a story like theirs, in such a powerful way via social media and the TV media, doesn’t do justice to the rest of us.
Our hearts hurt especially for those new mamas who recently received a “positive” Down syndrome diagnosis and saw this story on the news this morning. We know what a punch to the gut that must have been. But fear not, Mama. Welcome to The Lucky Few, you get to experience what most do not and we are thrilled you are here.
The responses to this story on social media were considerable. Many Rockin’ Moms trying to extend grace to this “celebrity” mother-to-be, saying, “I understand her feelings, but she doesn’t get the full experience of this story; she doesn’t know that she will feel horrible for these thoughts one day, because life is so much more than she could have ever imagined” and, “I am heartbroken to hear her feelings about Down syndrome, and that people don’t want a baby like mine, even though I have been there too.” These are the moms in my tribe. These are the women who walk in front of me, alongside of me and behind me. They are forces of goodness and understanding; they are also forces to be reckoned with! They are heartbroken by the way this information was explained, but they are extending grace. They are warriors and I am proud of them.
These moms work really hard to change the conversation about Down syndrome, to show people that life is worthy regardless of chromosomes. We want to share the blessings with others, especially those mothers who are where we once were — receiving a diagnosis. We want to bring about so much awareness that someday the diagnosis conversation will not make a mother cry in fear or pray that it is wrong, she will accept the information just like she accepts the sex of her baby. Nothing about this life is easy, that’s a risk you take choosing to be a parent. But, man! The rewards are exponential! Without the challenges, we would not fully and truly appreciate the awesomeness!
Here is the thing, we all want what is best for our children. Right? Of course. But, “what is best” is a variable in most cases, it fluctuates depending on the person and the circumstances. What we think is best, isn’t always best, sometimes we get it wrong. That’s life. That’s parenting. What we can do for our kids, the one thing that is not variable, that does not fluctuate depending on the person or the circumstance is to love them. Spread that stuff like confetti, people. That is what we can do when “what is best” changes or fails us.