Down syndrome

You Don’t Have To Be Brave, You Just Have To Be Mommy

The word Down syndrome first came into our world a little over two and a half years ago. In “I Didn’t Want Him“, I shared my initial reaction at finding out that the baby boy I was carrying would be born with Down syndrome. I know that everyone copes in different ways; some do it better than others. I did the best I could but, despite my best attempts at appearing brave and nonchalant when it came to the number of my sons chromosomes, there were times that my facade failed. One particular event occurred while I was at work, during the last few weeks of my pregnancy.

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I had been caring for a wonderful family, who was welcoming a new baby into the world. The mom had shared with me her experiences with her young son who had Down syndrome. He was three, and she considered him to be the best thing that had ever happened to her. She eagerly introduced me to him when he arrived to meet his new sibling. I wanted to love her child as much as she did, but all I could see were his almond shaped eyes, his chubby fingers, wobbly walk and ungraceful attempts at signing “hi” and “baby”. I could feel my heart begin to pound and my breaths becoming shorter and more frantic. I excused myself and quickly made my way to the private bathroom on our unit. I murmured to my charge nurse that I would be back and asked her to keep an eye on my patient.

I barely made it to the bathroom before the dam broke and the tears flooded out. I sat on the floor, hyperventilating and sobbing. This was not a brave moment for me and my resolve was crumbling as every single fear and worry swirled through my head. The thoughts were unending, each one bringing with it an overwhelming sense of anxiety. Can I do this? Can I be the mom that he will need me to be? Will I ever get to the place where I can tell a stranger that he is the best thing that ever happened to me? Will there come a time that I only see my son and not Down syndrome? Will the bravery that I appear to have, ever be real?

I wish that I could travel back in time to huddle there in the floor with my past self. I would take her face in my hands, look her in the eyes and tell her that all the answers were YES. Tell her that as soon as she holds that little boy in her arms, all her worry and fear would fade away. That the only thing she would see when she looked at her son for the first time would the blue eyes that his daddy gave him and the button nose that she gave him. That she would be amazed at how much he looked like his sister. That in one short minute, she would know, without a shadow of a doubt that she didn’t need to be “brave”, she just needed to be Mommy.

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I wish most of all, that I could tell her, the way she would feel with each of his firsts. How she would have to hide the camera to catch him turning over. How his motivation to belly creep would be a Taco Bell taco. How she would cheer when he signed “eat” and “more”. How loud she would scream, on camera, when he stood and took his first unassisted steps. How the tears would stream down her face when he looked at her and called her mommy for the first time. I didn’t get a visit from my future self that day. I did, however, put myself back together and return to my patients room. I knelt down near that sweet boy and asked if I could give him a hug, he willingly obliged. Try as I might, his mom could see through my mask of serenity, she squeezed my hand and whispered, “You’ll get there”.

I cant tell you how, because the route is different for everyone. Its possible that it will take some longer than others. There might also be days, that feelings sneak in so quickly and fiercely that they cause you to question where you are and if you will make it. Maybe you’ve made it there already, then again, maybe you haven’t. Regardless of what point the path you’re on, I want to say, YOU will get there too.

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8 thoughts on “You Don’t Have To Be Brave, You Just Have To Be Mommy

  1. I love this! We had a birth diagnosis, but the first month or so sounds similar to how you felt during your pregnancy. Thanks for putting into words how many of us feel!
    Your boy is gorgeous!

    1. Thank you so much! Writing this post brought back so many emotions from those moments during my pregnancy. It also felt relieving to be so transparent. I just hope that others can find comfort knowing that they’re not alone in how they may be feeling! Thanks for the compliment on our little, we make adorable children!

  2. What a great post!

    I hope thousands of Mommies expecting babies like ours read this… We received a prenatal diagnosis as well, but my families story is unique, actually really crazy, you can read about it here ( http://www.advocate.com/commentary/2014/08/25/op-ed-how-one-formerly-ableist-lesbian-mother-opened-her-eyes).

    Had the stars all not lined up, I wouldn’t be reading your post right now and I am thankful every day that those stars and Delaney Skye, my daughter and teacher, knew better. I wrote a memoir, my partner and I just launched our daughters Foundation The Delaney Ott-Dahl Foundation where we will provide pamphlets that can be handed out to parents receiving a pre-natal diagnosis alternative education beyond genetics and “This is where parents typically terminate and start over”. I think your post here might be a great link for us to publish on our pamphlet if that is OK with you?

    1. Thank you so much! I remember reading one of your posts related to your sweet Delaney! You guys did have a unique situation. You should check out my post “What determines worth”, it discusses the termination rates after a prenatal diagnosis.

  3. Sherry what a beautiful story of your journey thus far. You and Josh.are truly amazing parents. You indeed have very beautiful children. When you look in the eyes of both your children you can see the love in their hearts. You both have put that sparkle that shines through their.eyes. What a wonderful amazing story.

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