Forty and Feisty
I was born on August 2, 1980. 40 years ago. My mom said that she went into labor at a friend’s home while they were watching the Twins game. My parents headed straight to the hospital and I was born at 2:32am.
Imagine if I was a baby born in 1980 with Down syndrome, my parents may have very likely heard from the doctor that they should consider not taking me home, to institutionalize me because I was a ‘mongloid’, ‘retarded’, and that I wouldn’t do much in life.
Imagine another birth, one where the doctor enters the room and says, “I am sorry that all your hopes and dreams are over for your child because your baby has Down syndrome.” But this wasn’t 40 years ago, it’s today. Families (at birth and prenatal) hear this language every single day.
Imagine if this was your story. How would you respond?
What feelings and fears would you have?
Why are babies with Down syndrome discriminated against from the moment there is any indication that he/she may have an extra chromosome?
In 2013, I discovered a love and world that I had never known. One that came when we met our son Jack and found out that he had Down syndrome. A child that would learn and grow differently than I had planned. Although the feelings of shock and fear overwhelmed me, he looked at me with his almond shaped eyes, expressing all he needed was my love. Certainly his diagnosis hasn’t impacted our love for him, but it has opened us to a new perspective on life. We are better because of him.
We value Jack because of WHO he is, not WHAT he does. Isn’t that how we should see everyone?
He’s challenged us to see people, each uniquely created with a purpose. He’s taught us patience on this journey by appreciating the process versus the outcome. He’s taught us to see the potential and ability in everyone. He taught us that labels, generalizations, and a diagnosis does not define him.
What I also came to discover was the power of belief, personal bias, and fear have impacted people’s decisions for generations. After watching this pandemic unfold in the world and the power of influence of another’s choices, no wonder the population of people with Down syndrome is decreasing by 30% as a result of prenatal screening.
With our desire for the comfortable and easy life, society has given power to people to have a choice (and justification) that a life is not a life unless it meets certain criteria or standards. These decisions and biases are impacting the lives of babies with Down syndrome, the respect and value in society they deserve, the opportunities (or lack there of) for the future, and as data reveals, existence in society.
For my 40th birthday, I am asking you to donate $40 (or any amount) to my birthday fundraiser in support of Jack’s Basket. Jack’s Basket exists to eliminate bias. Different is different, not less than. In the next 40 years, I hope to work myself out of a job in that the birth of baby with Down syndrome would be welcomed and celebrated like any other. What if the world came to realize and understand that Down syndrome isn’t what we should be so scared of. What if we’ve been living the safe and comfortable life and completely missing out on God’s greatest plan for our lives because we are fighting for control of what we deem ‘perfect’? What (or who) have we defined as ‘normal’? What if one of the biggest tragedies is that we are missing out on some of the best gifts and life lessons because we are so insistent on our plans?
I envision a medical provider equipped with strategies to give the unexpected news in a way that would honor the life and human dignity of a person with Down syndrome. I imagine a new parent leaving the clinic or the hospital processing their personal feelings, possibly grieving what they thought, yet hopeful for the future, not weighed down by the trauma of someone else’s words or assumptions of the life ahead. While processing the news, they can recall words like “congratulations”, “your child will bring you joy”, knowing they are not alone because of the connection to another parent, supported with access to the resources available, and welcomed by the loving Down syndrome community that becomes a second family.
Hope, love, life. Why not? Why not make this a reality? Let’s do it for all the babies that deserve it and worthy of celebration. Let’s change the way the story starts for these babies.
Feisty gets things done.
2 Comments
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Chris
It’s so happy to see that your family is doing so well at raising and nurturing a child with down syndrome disorder. Things may get hard from time to time but parents like us will never give up on our own children for sure.
Emily
I was born on 8/8/80 and and pregnant with my 3rd son. We’re not sure yet, but it’s possible he has Downs Syndrome and I came across your blog looking for similar experiences. Though I’m only just 21 weeks, my heart hurt as I read your story, unable to imagine my husband and I going through that, as well! Our son will be born, extra chromosome or not, and he is already so loved! Thank you for your blog!