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21 Ways My Life Has Changed Because of Down Syndrome

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Nearly four and a half years ago I gave birth to my youngest daughter, Willow. She came out blue, prompting nurses to quickly whisk her away. While I patiently waited for my baby to be handed to me, doctors handed my husband and I a life changing diagnosis. Our daughter has Down syndrome. At the time, I didn’t know much about Down syndrome, but I did know our lives were about to change — big time.

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I was right.

In honor of World Down Syndrome Day, I’d like to share 21 ways my life has changed because of my daughter’s diagnosis. Why 21? That’s where you’ll find Willow’s extra chromosome! She has three copies of the 21st chromosome instead of the typical two. This also explains why we celebrate World Down Syndrome Day on March 21st (3/21).

21) I dance more. I’ve never been big on dancing, thanks to my insecurity. I’m also horribly uncoordinated. None of that matters now. When Willow declares it’s time for a dance party, everyone must dance. It doesn’t matter if it’s 6 a.m. or in front of our huge living room window. In the beginning, I danced for her. Now, I dance for me. Willow’s biggest joy has become one of mine.

20) I hug more. Willow is a hugger. She is the best hugger.

19) I laugh more. Willow enjoys life. She also loves to joke around with people. Her favorite targets are her dad and older siblings. I admit, I enjoy the show. Maybe a little too much.

18) I care more about my health. Simply put, I want to stick around for Willow. Not because I feel I have to, but because I want to. I look forward to a future with Willow, whether she lives independently or with my husband and I. I can’t wait to see where life takes my baby girl. I mean my big girl. She’s in preschool now!

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17) I’ve learned to be more patient. Willow has a great team of doctors helping her out. They’re the ones who keep my daughter healthy and safe. If only they knew how to keep time.

16) I’ve learned sign language. It’s taking Willow a little longer to learn her words, but sign language proves they’re in there. She knows what she wants to say. Sign language helps her say it. Unfortunately, Willow knows more signs than me. The girl is good.

15) I’ve learned to live in the moment. Willow has had some health struggles during her short life, including several heart defects. I try not to waste any of our moments together, as I understand how precious life is.

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14) I’ve learned to speak up. I don’t enjoy conflict. I hate confronting people. I often feel like I’m bothering people if I ask too many questions. None of that matters when it comes to Willow. I will always voice my opinion and concerns when it comes to her. One day, I imagine Willow will join me. God knows she’s opinionated.

13) I complain less. Willow has dealt with needles, knives and all sorts of sickness since coming into this world. You’d never know. This girl will howl like a wolf at the sight of a syringe, but once the poke is over, she’s over it! How dare I complain about a yearly flu shot.

12) I watch more movies. Willow learned to stand thanks to the movie Frozen. We used it as motivation. She also has learned more words from watching movies than anything else we’ve tried. Truth!

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11) I drink more coffee. This girl is hard to keep up with. Thank God coffee has many health benefits.

10) I sing more. I have a horrible singing voice but Willow doesn’t care. She loves it. She also loves “You Are My Sunshine” and “Twinkle Twinkle Little Star.” We sing them every night before bed.

9) I am more compassionate. Willow’s struggles have opened my eyes to the struggles of others. We’re all in this together, just in different ways.

8) I’ve widened my circle of friends. Thanks to Willow’s extra chromosome, I have friends all over the United States. We’re moms, bonded by our children, who happen to have Down syndrome. We’re also bonded by our love of Facebook.

7) I’ve discovered how restrictive and harmful a comfort zone can be. I’ll admit, before Willow, I shied away from conversation with those who had a visible disability. I was afraid of saying the wrong thing. If only I had known I had nothing to be afraid of.

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6) I care more about who’s in office. I’ve always been an active voter, but now I’m an informed voter. I realize the people in charge have the ability to shape my daughter’s future. I’m determined to make sure that future is a bright one.

5) I eat more cold treats. Willow is just so stinking cute with a cone in her hand. Icees make her irresistible.

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4) I listen better. It’s important that I hear what Willow’s doctors, teachers and therapists are saying. Sometimes I don’t agree with their opinions. Other times, their opinions have been the difference between life and death. Paying attention is key.

3) I smile more. Contrary to popular belief, people with Down syndrome are not happy all the time. But, spending time with them will lead to happiness. It’s a fact.

2) My faith has grown. I believed in God before Willow came into my life. I just didn’t understand the depths of his love and faithfulness. I believe Willow is a gift from heaven. God has also been my strength during the scary parts of this journey.

1) I see beauty in difference. Just look at those eyes, that smile.

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She’s beautiful.

While some might think a Down syndrome diagnosis will change your life for the worse, I’m here to tell you it has changed my life for the better. I can honestly say, writing a list of positives is a lot easier than one of negatives. In fact, I think I’d struggle to come up with one, let alone 21. That’s because, even the hard parts of this journey have changed me for the better.

As you can see, Willow has definitely changed my life. This World Down Syndrome Day, I challenge you to let someone with Down syndrome change yours.

Follow this journey at The Mighty Willow.

Originally published: March 19, 2018
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