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The Real Challenges of Raising My Child With Down Syndrome

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Being the mom of a child with Down syndrome has its challenges, but I don’t think people know all of the challenges.

It’s challenging getting past drive-thru windows with a child blowing kisses and stealing the hearts of all the employees.

It’s challenging making sure my other child gets as much attention as his almond-eyed brother does.

It’s challenging leaving a restaurant when my little guy wants to go to every single table to say goodbye, and it’s challenging to follow through with consequences when that cute, pouty face makes its appearance.

Yes, having a child with special needs takes extra work, and there are struggles involved, but there are also many, many ways children with special needs enrich the lives of others. I think people see the difficulties, but unless you have a child with special needs in your life, it is hard to understand the endless benefits.

Have you ever heard someone reminisce and say they miss when their child was little? Have you heard someone wish they could slow down time so their sweet little baby wouldn’t grow up so quickly?

I actually didn’t have to wish for such things once my child with Down syndrome was born. He was little longer, and he needed me to carry him around longer, too. I got to enjoy each stage of his development for a stretched out period of time. He isn’t growing up on me as fast as another child would. I actually do get to keep him little longer, and I like that.

The other day, along with several others, I was listening to someone talk about something upsetting to her. I was taken aback when (in front of everyone else) she stopped to tell me, “I don’t mean to talk about this in front of you. I know you have problems.”

Now, this woman doesn’t have a mean bone in her body, and I can assure you she didn’t mean anything negative by her words. I think that’s why it has been on my mind so much. I don’t think she was implying I seem unhappy. What I think is that most people don’t want to be in my shoes. I think that others would find my life problematic.

The understanding I get from the general population is, “I’m glad you’re handling this well, but I’m glad it’s not me.”

I am glad it’s me.

Follow this journey on Living By Faith.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Originally published: November 28, 2015
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