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The Things You'll Learn While Raising a Child With Down Syndrome

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After we received our daughter’s Down syndrome diagnosis, we wondered what that meant for us and our life. In the last few years, we have learned several things.

I am going to start this off with a disclaimer: All paths are different. Some will have a lot more obstacles than others. These are what I have found to be true in my experience.

There will be a lot of doctor visits with a lot of different doctors. You will probably become a pro at navigating the local children’s hospital.

Your child’s smile will light up a room like you have never seen before. And it will be so contagious that you can’t help but smile too.

It may be hard when you see children of a similar age far ahead of your child developmentally.

You will celebrate every milestone achieved and feel such a sense of pride for your child as they reach each one.

You will probably notice other people with disabilities more than you did before.

You will be asked about Down syndrome more times than you care to answer. You will receive a lot more unwanted advice than you ever expected to receive. You will probably hear “I’m sorry” or “I’ll pray for you” so often that you will want to scream (I have).

You might even notice certain words or phrases more when you never gave them a second thought before. The “r-word” is a big one. You will start to see the world from a different point of view.

One day, it won’t feel so different. I believe you will see your child as they are and not think about the delays or the appointments or the diagnosis. You will compare their features to other family members, not the physical traits of Down syndrome. You will watch them crawl away with the remote control and wonder when they got so fast.

You will see your child out playing and you won’t think to compare them to other children, but be proud of how far they have progressed. You will see your child for who they are and know that is exactly who they are meant to be, and know you are meant to be right there with them.

Originally published: January 31, 2020
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