Fear Creates Purpose

July is Disability Pride Month. While I wish that we could simply celebrate those with disabilities every day, it does offer a good chance to reflect. This post combines thoughts from “Living a Life of Purpose”, which I wrote in 2015 and “Why We Are so Scared of Down syndrome”, which I wrote in 2020. I wish I could say that the narrative surrounding Down syndrome has totally changed in the past 4+ years, and that those posts aren’t relevant anymore. Unfortunately, so many stigmas and misconceptions still exist, and I think that the words I wrote then are still as true as ever…

We had a choice when we got Jack’s diagnosis.  Would we be stuck on what we wanted with our lives, or surrender our plans?  Would we miss out on all the things Jack would teach us (challenging and joyful) through this extra special chromosome or refuse to grow?  What story did we want to tell?

I get it.  I get the fear that comes when you’re given unexpected news.  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 who 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.  

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 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 would include an extra chromosome.  

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.  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?   

I think it’s time to change the way the diagnosis is given, and how biased misinformation needs to stop being given out to new and expectant parents. I share the truth about what it’s like to raise a child with Down syndrome.  Is it easy?  No.  Parenting is hard and daunting.  But raising any child comes with challenges and hardships.  Why do we feel like we can share stories of kids with Down syndrome acting out or being stubborn, and think that ALL people with Down syndrome do that? Should I assume that because I’m having a baby girl, she will want to be a cheerleader?  That her life will be filled with drama and mean girls? That she will fit the stereotype that girls have been labeled by society?  Doesn’t anything have to do with how you choose to nurture, love, and discipline your own child?  Isn’t that the best thing for your child?  Don’t you have a choice in how you parent your child? 

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.

This journey may have started with feelings of fear and uncertainty, but those same feelings have now driven me to find my purpose – celebrating every baby born with Down syndrome and ensuring that every family’s story starts with “Congratulations!”. I hope that many more people will embrace the initial fear, and use it to ignite their purpose.