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When My Daughter Was Born With Down Syndrome

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This week I was hit hard with emotions. Sometimes things don’t seem to affect me as much, but when it comes to my personal story and experiences, some words can bring me to my knees in pain.

The other day, a friend posted she had heard of a couple who found out their child would be born with Down syndrome and had an appointment scheduled to terminate their pregnancy. She asked us parents to chime in on what we would say to someone in her situation.

The waterworks came immediately, I wasn’t finished reading the post when my eyes were burning with tears. My heart sunk and my being went back to that deep dark hole I fell into more than three years ago.

My “now” self wanted to tell my “then” self everything was going to be OK; — that I shouldn’t feel sad, mad or in horrible despair — that this baby, this sweet girl, was going to show me what her life was all about. I wanted to tell my “then” self I was being melodramatic, that all those tears, all the yelling, all that being angry with God was not necessary; a waste of precious time.

But I had to stop myself and realize I had to go through all those feelings and emotions; that only if I had known Jordan Grace herself, I could never be satisfied with knowing what it would be like to have a child with Down syndrome.

I still don’t know what to tell my “then” self, or the woman today dealing with these news of diagnosis, or the ones who are yet to come.


They call us the lucky few for a reason. I always say we live this amazing secret society, where only the ones who live it can understand, appreciate and rejoice in it. It’s unlike anything else I’ve ever known. It’s something that people can share with you, but unless you dive in and swim in this pond of beauty, you may never know.

I think it’s safe, although sad to say, that I had very low expectations. Basing it from what the doctor lectured us, she would be incapable of being human, I guess. He described someone who would be dependent, someone who needed help to do anything and everything.

We all talk about it within our community, the way the news is delivered can make you or break you. It certainly broke me. I wasn’t expecting to feel the way I did, to think that the hardest decision to make would be to continue on and live this life we were told was horrendous.

It wasn’t.

Because in the end, my child, our Jordan Grace, is truly better than who we imagined her to be.

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Originally published: October 1, 2017
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