To the Mom Who Just Got A Down Syndrome Diagnosis:

I know you’re scared.

I was there. I remember sitting in a crowded room, literally shaking when I was on the phone with my doctor as she said the words, “your test came back positive for Down syndrome.”

I remember her trying to tell me how precious these kids are and how her sister loves being a special education teacher.

I remember trying to walk through a parking garage and realizing I was holding my breath, just trying to hold it together until I got to the privacy of my car.

I remember it taking forever before I got to my husband’s office for me to tell him, as I just tried to process…tried to accept. I was just a shell of a person in these moments. Complete shock. Vacant.

And then my husband told me it was going to be OK. He said we were going to “rock this new normal.” I wanted to believe him, but it was hard.

I’d love to tell you that I immediately accepted it and was excited to meet our baby girl and didn’t care about the diagnosis. But I did care – mostly because I just didn’t know. I was naive and had not been around a lot of people with Down syndrome. I made the mistake of googling some information. Horrible idea. We went to a high-risk doctor to follow up. Terrible experience. Smart doctors are sometimes really bad with their words and their bedside manner can be excruciating.

Weeks, months went by and I was sad. Why was this God’s plan for our lives? This isn’t what I had pictured. I did not plan on this. Ever. But it was our future and as upset as I was, I still wholeheartedly believed all life was so precious, made by God, with no mistakes. Nothing but His plan A for our lives.

So we began reaching out, meeting some families in the Down syndrome community and talking to friends. I began to thaw. I met a super cool mommy with a one-year-old baby girl with Down syndrome. I just stared at her and saw how beautiful she was and how happy her mommy was. I thawed a lot more.

I began to be quiet and listen to God. His comfort was always there and His promises were always true and I began to feel better. Still a little fearful of how different our new normal would be, but better.

It’s such a long journey to find out in your pregnancy, and then have to be pregnant. No face to the name you picked. Nothing to picture. Just question marks. Just Down syndrome. It’s scary, and not really exciting – I get it. I understand.

AND HOW YOU ARE FEELING RIGHT NOW IS OK. IT’S NORMAL. Take some time to mourn the fact that your normal is going to be a little different.

But oh my…when she got here. All those feelings and heartache I just told you about – Poof! GONE. Completely.

Does it get much better than this?


I was enamored with my precious, perfect baby girl. I was so proud of her, so happy to be her mother, so grateful to God that He chose us to be her family. His plan is perfect and He gives really great gifts – better than we deserve, even if they don’t seem like gifts we would pick at the beginning. At this point in our lives, as I read over this post and remember how I felt at the beginning, I feel completely ridiculous. But it is where I was and it is part of our journey – for me to tell you that it’s OK to be shocked and that you won’t feel this way for long.

Proud daddy.

Where you are right now is scary. It’s different than what you expected. It doesn’t make you a bad person for being scared – but I promise, oh how I promise, that this new normal is beautiful. Every single thing is now celebrated, the love is abundant, and the community is amazing.

Gage loves her. He's going to be an awesome big brother.

So please know that how you feel right now is fleeting. It’s new, it’s a surprise, but it’s going to be amazing.


18 Months Old

Tagged with:
Posted in Down Syndrome, Gracie
6 comments on “To the Mom Who Just Got A Down Syndrome Diagnosis:
  1. Virginia says:

    Beautiful words. I pray this post along with others you write will reach to exactly the right parents who are faced with a new normal.

    Sent from my iPhone

  2. Shari says:

    I just love me some Gracie!!!

  3. Ashleigh knight says:

    Gracie has changed so much! Beautiful picture and awesome post!

  4. danielle says:

    Beautiful, encouraging post.

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