Dear New Parents of a Baby With Down Syndrome, I Feel Compelled to Tell You This


Dear New Parent,

If you’ve found this place, you may have just discovered that your baby has Down syndrome. You’re likely standing at a fork in the road. Whether your baby has been born yet or not, you’ll need to make choices now, in action or thought, that will change you forever.

I don’t know you, so I will not tell you how you feel or what’s right and wrong. I feel compelled to tell you something, however, because I don’t want you to leave this place alone. You’re not alone.

What’s done is done. Down syndrome has entered your life and that will never change, no matter what happens down the road. For that, I consider us connected. No matter what the future holds, what twists and turns your life follows, we will always have that in common. You are not alone.

My baby was in my arms when I discovered his Down syndrome. In a flash, all I thought I ever knew fell away. I didn’t know how to continue. No one had written me a script. No one had told me what lay ahead. I thought I stood at the edge of a vast, terrifying wilderness with nothing. I was so wrong.

Instead, it felt more like shedding a skin. I shed old ideas, thoughts, assumptions that I’d accepted as truth, only to emerge a truer, clearer self. Shedding that skin was intense and painful for me yet so necessary to reveal the next person I would become. I had no script because I wasn’t meant to have one. I was writing it as I went along, and each time I shed a new skin, I add to my narrative. I’ve only been at this for a short time so far; I have a lot of work ahead of me, that I know.

There is light and darkness, hope and fear. Fear grew in the shadows and whispered doubts in my ear — that I was not enough, that I couldn’t do it, that I was not strong. Some doctors and professionals will peddle fear. Don’t buy it. There is no future in holding fear’s hand.

Life isn’t easy. Life can be brutal, shocking and beautiful. Don’t forget that life was like this before the diagnosis and will continue to be afterwards. Early on, someone helped me by comparing getting a Down syndrome diagnosis to taking a single, brief glimpse into a crystal ball. Getting a diagnosis gives you that single glimpse, but you can’t know what kind of hope, love and joy is also swirling around in your family’s future.

I cannot tell you what the future holds, but I can tell you what I do know:

Your baby will be beautiful.

Your baby will be fierce.

Your baby, like every other baby, will bring a light to your heart, break it apart and mend it together again.

Light over darkness, and hope greater than fear.

No matter what happens, you are not alone.

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