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Why I Can't Imagine a World Without Down Syndrome

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I recently watched a documentary called “A World Without Down’s Syndrome” (spelled the English way). The title in itself makes me sad. Yes, my initial response to the news that our second baby would have Down syndrome was shock and fear of the unknown. But I thank God I had the time to get to know the baby inside me and know she had both a heart defect and Down syndrome ahead of time. I had time to process the gift and it made her birth a celebration, not something to mourn.

Hindsight is always 20/20, and though people could have said and did say amazing things to me about their loved ones with Down syndrome, I wasn’t ready to hear them or to accept my future. Unless you are in our shoes, it’s hard to picture having a child with Down syndrome and really experiencing this kind of love. It cannot be put into words, though I’ve tried many times — the feelings I have as a mother, and what I see each day in her sister’s eyes and in her father. Just incredible, unconditional love.

I believe we are called #theluckyfew for a reason. We have the opportunity to know what it truly means to love someone with Down syndrome. I’m not here to convince anyone to love my daughter, I just want to share what I know as an insider.

There are many forms of screening, and we had a few of them done. Down syndrome was not detected in the early stages of my pregnancy. We were told at our 20-week ultrasound that our baby had a heart defect most commonly correlated with Down syndrome.

We, like many others who have been in our situation, were devastated to say the least. Why? Because the doctor who delivered the news was very much for termination of the baby. He told us the baby, who we now knew was the little sister our oldest daughter had prayed for, would be a burden. He tried to talk us into an abortion for a period of time.

As a practicing Catholic, I’ve never believed in abortion. But as faithful as I’ve been all my life, this doctor was trying to talk me into terminating a 20-week-old life inside me. In such deep despair, I found myself in doubt. This doctor, who never spoke about anything but termination, failed to tell me what her life would truly be like.

He was completely wrong. She’s not a burden; in fact, she’s a blessing.

I came to terms with the Down syndrome diagnosis at some point during my pregnancy. I don’t remember when, but I did. I didn’t embrace it, however, until Jordan Grace turned 2 years old. After writing a children’s book and finally filling out an application to become a member of the Down syndrome societies, both local and national, I jumped in with both feet.

We often don’t imagine that doctors could be wrong. We believe what they tell us. But along my sweet journey of endless families telling the same story, I’ve seen how they weren’t given the facts, either.

I never imagined my life would turn out this way. It’s actually a lot better than I expected it to be. Jordan Grace is a regular little girl; she talks, plays, laughs and enjoys every single minute of her life. It kills me to think of my life without her.

Her life is worthy and her life means something. She is a valuable human being and she deserves to be loved, respected and included. It is my life’s mission to advocate for her and for all who are “different.” I cannot imagine a world without Down syndrome.

I have so much pride in my family. We are not perfect, no one is, but we sure are blessed and happy with the way our story turned out. This life is about this beautiful journey we’re on. I am loving every speed bump, every traffic stop, every green light, and every yield!

For those of you who walk with us, we are proud to know you. For those of you who judge us, it doesn’t bother us, because we are living this beauty. For those of you who pity us, you wouldn’t if you knew this kind of love. For those of you who learn from us, we are humbled. For those of you who love us, thank you for opening your heart! We will keep sharing our story of love.

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Originally published: March 23, 2017
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