The Gift of Down Syndrome

Today is World Down Syndrome Day, one of my favorite days of the year! Last year, I blogged about World Down Syndrome Day for the first time. I mostly talked about the pregnancy and those early days. This year, I thought I would focus more on how life is now, especially being in a new state. I’ll also share how we celebrated this special day:)

First, here is some quick information for ya! We celebrate on 3/21 because individuals with Down syndrome have 3 copies of the 21st chromosome. It’s what makes them extra special and extra unique. It also means individuals with Down syndrome may learn and grow differently. However, with the support of their families and communities, they can really thrive! It’s so important to never assume what they can or cannot do.

We consider ourselves the “lucky few” because not all families are blessed with a child who has Down syndrome. Many who don’t know much about it will see them as a burden, not a blessing. However, that couldn’t be further from the truth. They are truly some of the best people on the planet!! Our family is better because of Drew. We are more accepting, patient, kind, and understanding of differences. We have learned to slow down and celebrate the smallest of victories. Life can be a big competitive rat race, but Drew is our constant reminder of what really matters.

You would think coming from a big city, I would have established a strong tribe of mothers of children with Down syndrome. I met some great ones but didn’t make any real friendships. Also, as Drew got older our tribe seemed to get smaller. Our turnouts for the Buddy Walk decreased a lot over the years and honestly Down syndrome awareness took a backseat.

I think it was part of God’s plan to change that for us moving to Michigan. I am so grateful to have found a group of awesome women who know and understand what it’s like raising a child with Down syndrome. We connected easily and it’s been so encouraging. Down syndrome has a way of bringing people closer together, just another reason what makes it so special!

It’s hard to believe we’ve had this extra chromosome in our life for ten years now. A decade of learning, growing, and changing. All for the better. Ten years ago, I had such a narrow view of those with disabilities. If Andrew had been born typical, I may still be that way. I know God doesn’t make mistakes. The world needs individuals with Down syndrome. They make us better. They make the world better.

There are many days I don’t even think about Down syndrome. Drew is Drew, not a label. We adapt to his needs just as any parent of a typical child would. Drew goes to school with his brothers and peers. He plays on a soccer team. He attends Faith Formation to grow closer to God and receive the sacraments. Drew has friends. He has things he likes and doesn’t like. He can be very happy but also mad and stubborn. He is much like any other 10-year-old kid!

And yes, that extra chromosome does make some things different. Drew has a weaker immune system so gets sick more than most kids. It takes him longer to learn things. He can’t speak how we expect a typical 10-year-old to speak. He needs help going to the bathroom and getting dressed. But does that make Drew any less of a person? Absolutely not! We are not defined by society’s expectations and what people think of us. We are defined by the Creator who made us in His image.

You are fearfully and wonderfully made.”

Psalm 139:14

I am not going to lie and say having a child with a disability is all rainbows and sunshine. It’s hard. Very hard. There are times I question God. Times I feel I am not equipped to be the best mother for Andrew. But I think ALL parents feel that way at one time or another. I am not an extra special mom because I have a child with Down syndrome. I just do what every other mother does: love my child with my whole being. And that love looks different for each family. For me, it’s accepting and embracing my beautiful child the way God intended him to be. It’s attending and advocating at IEP meetings. It’s learning how to communicate with an ACC device. It’s scheduling more doctor appointments and a very long potty-training journey. It’s explaining to other children at the playground what makes Drew a little different. It’s spreading awareness, especially on World Down Syndrome Day.

And you know what makes it all worth it? I get so much in return. Drew loves with his whole being. A genuine love. I feel his pure heart every day with his smile, laugh, random hugs, and simply being around him. His light truly radiates. I have encounters in public that probably wouldn’t occur without Andrew. Random strangers showing me a photo of their own loved one with an extra chromosome. Those small connections because of Down syndrome. I have found a group of friends that maybe I wouldn’t have found without Down syndrome. I dance more, hug more, laugh more. I live in the moment. I would like to think I am a more compassionate, caring, accepting person. I see beauty in difference. All because of one measly extra chromosome.

Drew has changed my life. And this World Down Syndrome Day, I challenge you to let someone with Down syndrome change yours!

How We Celebrated 3/21

We have an amazing school community that celebrates the special day. The students were asked to wear their crazy socks and the Down syndrome colors-blue and yellow. We wear the socks because when you put a pair of socks heel to heel, they somewhat look like a chromosome. Also, we make them mismatched and wild so hopefully people will ask why we’re wearing them. Then we can start a conversation about Down syndrome!

I also sent in a special treat with Lucas and Drew to share with their classes. The font came out a little smaller than I would have liked but the message was there!

Drew visited Lucas’s classroom and Lucas talked to his classmates about Down syndrome. Drew loved showing off his speech device and being the center of attention!

After school, we took Drew to his favorite place which I am sure you know by now-Chick fil a! He recently formed this 5-word sentence on his device: “Can I go eat Chick fil a?” How can we say no?!

Happy World Down Syndrome Day, Drew. Life is so much better with you in it!