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Parenting a Child With Down Syndrome Can Be Lonely

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“Sometimes the journey gets lonely, but don’t ever give up.” — unknown

When a baby is born, it changes everything. For new parents, life as they know it becomes a thing of the past. The same can be said when a baby with Down syndrome is born. Everything changes. Even things you thought would never change. One day you look around, and the people who you thought would always be there, aren’t.

My youngest daughter, Savannah, is 22 months old. She was born over two months premature, and she has Down syndrome. Her diagnosis was a surprise to us. Things haven’t always been easy with her, but we love this journey we are taking with her.

In those early days, weeks, and months when we first brought Savannah home, I noticed that occasionally people would act differently around Savannah. Sometimes strangers would look at us, then quickly look away. Even some of our own (extended) family would try to avoid Savannah, would refuse to hold her; as if they were afraid they would catch Down syndrome. But that was more of the exception than the rule back then. The vast majority of our family, friends, and even strangers reacted in a very positive way, with compliments and kind words about how beautiful she is.

But as time passes, things change. That’s just the way life is. And this journey our family is on is no different than everything else in life. Constantly shifting. Constantly changing.

I’ve realized that the majority of people in this world are always going to gush over a new baby (who wouldn’t?) And not just “typical” babies, but all babies. When people see babies who have complex medical issues, the majority of them still just see a baby, an adorable bundle of joy to cuddle and coo at, regardless of the “package” they came in. But as babies grow up, reactions change. And not always for the better.

As Savannah has been getting older, I’ve gradually became more and more involved in the Down syndrome organizations in my area and various support groups. It’s a tremendous source of encouragement to know other moms who “get it.” And we are a passionate bunch, the Down syndrome and disability communities. It’s great to have a shared passion.

But my passion is not the same as it was before Savannah. Sometimes it feels like my friends and family get tired of hearing about or having to accompany me on my various endeavors related to Down syndrome. Sometimes it hurts. Sometimes it can feel lonely. But I have to follow my heart, regardless of who joins me or who doesn’t.

Parenting a child with disabilities can be challenging at times. For some of us, it’s an unexpected journey. It can take a lot out of you. And it can be so lonely at times, but we can’t give up. Because the rewards, the joy she brings into all our lives, is more than worth it. I would choose Savannah, I would choose this journey every time, in a thousand different lives or a thousand different worlds. I would choose Savannah every time.

Originally published: September 10, 2018
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