I remember the first occurrence in my life that really shook my faith. I was in the third grade, I was nine years old, and my mom had just given birth to my sixth sibling. What should have been a joyous occasion was actually quite scary. You see, my brother was born two months premature. He was very sick and very weak. To make matters worse, since he was in the NICU two hours from home, Dad had to tell the rest of us that Max had Down syndrome over the phone.
All of us were familiar with the term; we had family friends who had a child with Down syndrome. We knew what that meant: Max was different. His face would be different. His eyes…his speech…his abilities… everything. Everything was going to be different.
It was the first time in my life that I was ever mad at God… and I mean, MAD.
“How could you let this happen?!” I demanded of him. “We’re good people! We do what you ask of us!”
I really didn’t understand why God was punishing my family.
A couple weeks later, we got another serious phone call from Dad in the hospital. Max was very sick; the doctors were worried that he wouldn’t make it through the night. “Pray,” Dad told us, “pray hard.”
This is when my first “swap” took place. The severity of the situation definitely struck deep, helping me come to an important realization. All of the sudden, my fear of living with a brother with Down Syndrome, turned into a fear of living without him.
I laid on the couch in my parents’ living room and cried, “God — I’m sorry! I so sorry! I don’t care if he has Down syndrome! He’s my brother!” Though those were the only words I said, it was a plea to God to help my brother stay strong and fight through the night. It was probably the hardest I had ever prayed in my life.
I am happy to say that Max made it through the night and has spent the last 19 years bringing nothing but joy to our family. He is currently a senior and high school, plays multiple sports (including baseball, basketball, bowling and cheer-leading), and is named “employee of the month” at his school cafe time and time again. He dreams of owning a cafe of his own someday, hiring all his siblings, serving macaroni and cheese, smoothies and all sorts of espresso. He even wants there to be an outdoor patio where people can bring their dogs and buy them homemade dog treats. My favorite aspect of this hardworking entrepreneur’s future endeavor is the name he came up with, all by himself:
(sidenote: “descrumptious” is a word Max made up years ago, combining the words, “delicious” and “scrumptious)”
When I was nine, I knew that everything about Max was going to be different, I just thought “different” was going to be bad.
I know I’m not the only one to have experiences like this. Even people who are incredibly pro-life and value the dignity of every individual have no idea what to expect when they hear that their own child has Down syndrome. It’s a scary place to be.
One side of the debate talks about a low-quality of life, focusing on all the things that this child with Down syndrome won’t be able to do. It’s somewhat sad because, in all honesty, I have never met an individual with Down syndrome who hasn’t been able to achieve something great.
Thankfully, this mindset is changing. There are so many people who celebrate Down syndrome for the gift that it is, and celebrate the achievements of those who live amazing lives “even though” they have Down syndrome.
March is one of my favorite months, we have lots of family birthdays (including Max’s) but it’s also the month on which we celebrate World Down Syndrome Day!
The medical name for Down syndrome is Trisomy 21. It explains clearly the genetic difference that is visible in these individuals. Most people have two #21 chromosomes; persons with Down syndrome have three. For this reason, the entire world takes March 21 –or 3.21– to celebrate!
In honor of Max, and all his friends whom I so dearly love, The Swap is hosting a World Down Syndrome Day Giveaway! One lucky winner will receive a package full of goodies which were purchased from the following businesses — all of which are owned by entrepreneurs with Down Syndrome.
For more information about the giveaway (and your chance to win), check out my Instagram tomorrow for the giveaway kick-off post! For those of you who aren’t on that aspect of social media but still want to enter for a chance to win, subscribe to my email list for 10 entries! Current subscribers are entered automatically (if they respond to the entrance email I sent 🙂 ).
Share this post with all your Down syndrome loving friends — and good luck!