Why Leo's Journey Matters

I have been inundated with messages, calls, conversations about Baby Leo. If you have not heard about this rock star baby by now, you will. Everyone wants to know how I feel about all of it. They want to know, what is my "opinion on what happened." I hope I can articulate what I am feeling, without tears, because I am going to be honest, this situation has made me re-live a lot of my own journey. So here I go!

If you have followed this story, you will read that Leo's mom and dad did not exactly agree on how this should all play out. Each have their own take on how this happened. I am going to keep this real. Cuz I always try to. This does not just happen in Armenia, this plays out all over the world. Yes, Armenia might be particularly hard, but if you stay with me on this, I might be able to connect some of the dots why it is hard all around the world.

There is nothing simple about the day you hear the words, "Your baby has Down syndrome."

So I would like to walk this out with all of you, from our family's experience.

When ME was born, we did not know a single person in the town we had just moved to.

Not a single one.


It was up to all of us, my husband and I, my three big kids, and my sweet baby boy Nicholas, to get through this time.

My family was 20 hours away. The day ME was born, all I wanted to do, was lay my head on one of my five older sister's shoulders, and let them tell me it was all going to be okay. But I was too far from home, and it was up to me.

The medical professional who delivered ME cried. The room went silent. Like she died. And when I say silent, I mean deathly silent. Immediately. I could feel my body go numb, the deeper their silence.

I knew.

I knew all through my pregnancy that ME had Down syndrome. My OBGyn in MS said something very profound  to me the day I told her I believed my baby had Down syndrome (in spite of the fact that the screenings said no). She said, "A mama knows."

I knew.

On the day she was born, the room went silent.

I thought she died. When I heard her cry, I knew, she did not die, the silence was the beginning of my journey. Later, one medical professional admitted she cried. On my daughter's birthday. She did not have to admit it, I already knew. I saw. I was numb, but I saw.

Next was the heart condition. That came right on the heals of Down syndrome. A new move, far from home, baby with Down syndrome, heart condition. It was all a lot.

At four months, ME went in to heart failure. Open heart surgery loomed.

I wondered if I would ever laugh again. No I did not wonder, I was sure I would not. This was all too much.

ME's heart was fixed, and that was the day I began to de-numb. I could feel myself returning to the pre ME days. At least a little, because to be honest, the pre ME days were now gone.

The attention ME garnered just from being born,  from the International Paper family in Georgetown, was amazing! They wanted to help so much. They encouraged us to create a support group for families in the Grand Strand area. I was still numb at this time. But I did all I could do.

Then I moved to Memphis. ME was 2. The busy-ness of a new non profit was behind me. Open heart was also behind us.

It had all been a lot.

I asked my husband if we could move somewhere, where I could sort this all out. I picked out our house, in the woods, where I could take some time to just take this all in. This is the place it all hit me. Like a ton of bricks. I fell. Deep. I knew I had to figure out a way to process all that had just happened.

So I started to blog, as a way to sort of get my voice out there. I was sinking. Surely someone would hear me. They did. They heard me. I wanted the world to know, my daughter is amazing. The world heard me. More than I expected.

The first day, there were 1000 people following my blog posts. By the end of the week, there were 10,000 following. The overwhelming never stopped. It simply grew.

What does this all have to do with Baby Leo? I do not live in Armenia. But I had a similar experience. I have spent many days since ME was born encouraging the world to understand that  parents do not have to have that experience.  It can be different. The Grand Strand Down Syndrome Society was formed because I had that experience. The IDSC was most definitely formed, because I had that experience.

Sometimes, we write things, and the world hears us. Some times, we say things, and the world hears us as well. Leo's journey matters, because the world is hearing about it. My hope is that good can come from all of this attention.

I have reached out to Leo's dad. I hope to reach out to Leo's mom. I want to tell them both, I understand. What I did not know the day that ME was born, was that the world would hear our voices. ME's and mine. Leo's dad and mom, take it one day at a time. Take a deep breath. You are not alone. The Down syndrome community is here to support you. One day at a time.

This entry was posted on Monday, February 9, 2015. You can follow any responses to this entry through the RSS 2.0. You can leave a response.

One Response to “Why Leo's Journey Matters”

  1. I can't imagine how the silence and the crying from a medical professional would set the tone in the room. What a rocky start. I know what you mean about the release we get from blogging, and I am thankful for you sharing your story.