Like most people, my husband and I were so excited to welcome another baby into our family. We were even more thrilled to learn that our third child was a boy. Our two older daughters quickly assumed the mother-hen roles and couldn’t wait to spoil their baby brother. 
Midway through my pregnancy, our joy turned to angst when we learned that our unborn baby would be born with a congenital heart defect, one that would require open heart surgery to repair. Furthermore, the type of defect he had was commonly seen in kids with Down syndrome. After additional testing, we were given a 90% chance that he would be born with Down syndrome and last August 4th, he showed up three weeks early, extra chromosome and all.
After our prenatal diagnosis (you can read more about it here), my husband and I went through every emotion in the book. There was anger and sadness revolving around a condition we knew nothing about. There was confusion and worry, questioning how and why this happened to us. And, there was grief. I mourned and longed for the perfect baby I had envisioned. I didn’t want to be a special needs mom, it seemed overwhelming and hard. I didn’t think I could handle it.
While processing through all the feels, we took it upon ourselves to research our baby’s heart defect, speak with his doctors to formulate a plan and learn about Down syndrome. With knowledge came power and, believe it or not, happiness and excitement. By the time his due date rolled around, we were more than ready to meet our little man.
Our son, Baker, is now 7 months old and on this World Down Syndrome Day, I wanted to honor and celebrate him the best way I know how – by writing good ‘ol blog post while raising awareness and smashing stereotypes, of course!
To start with the basics, I wanted to share what Down syndrome is…
- Down syndrome is the most common chromosomal condition, occurring in the United States approximately once in every 700 births.
- Down syndrome occurs when a person has a third full or partial copy of the 21st chromosome.
- There are three different types of Down syndrome and the cause is unknown.
- Down syndrome occurs in people of all races and economic levels and while older women have a slightly higher chance of conceiving a baby with Ds, 80% of children born with Down syndrome are born to mothers under the age of 35.
Our son was born with Trisomy 21. It was a complete fluke, present in his genetic makeup from the point of conception. There was nothing we could do to prevent it and the chances of us having another child with Down syndrome is around 1%.
Diagnosis and all, the moment Baker was born all of our apprehensions melted away. We could see past the negative connotations and societal limitations surrounding the words “Down syndrome” and see it for what it is not…
Down syndrome is not scary. It can feel scary when you’re thrown into a world of unknowns but where there is fear, there is even more happiness. Every baby we’ve welcomed into our family has brought immense joy and Baker is no exception.
- Down syndrome is not bad. It can – and did – feel very dark at times. The emotions are overwhelming and all-consuming. But, out of the darkness came light. Baker is our light, our breath of fresh air. He exudes everything that is right in this world. He works hard. He is smart. He is perfect.
- Down syndrome is not sad. Contrary to popular belief, no one is happy all of the time, but a survey once concluded that 99% of people with Down syndrome were happy with their lives; 97% liked who they were as a person and 96% liked how they looked. I’ll take those odds any day.
- Down syndrome is not a burden. It might feel heavy at first. There are additional doctor appointments to schedule and specialists to see and therapies to incorporate but the hard work pays off and when he hits a milestone, we throw a freaking party.
- Down syndrome does not define a person. Baker is a baby boy who happens to have Down syndrome. He is not “down” or a “Downs baby.” He is so much more than a diagnosis and while we talk about Down syndrome a lot, we don’t use it to describe him.
If you or someone you know is needing support or wanting to learn more about Down syndrome, please check out some of these amazing organizations:
- Down Syndrome Guild of Greater Kansas City
- Down Syndrome Diagnosis Network
- National Down Syndrome Society
- National Association for Down Syndrome
- National Down Syndrome Congress
The support and love we’ve found since welcoming Baker into our family has been amazing and as moms, we all know how important it is to find your tribe. This path isn’t one we thought we’d walk but we’re so glad because it brought us to Baker. Gone are the days of me longing for the baby I thought I wanted. I spend my time loving the baby I didn’t even know I needed. He makes me better in every way, and I’m so incredibly lucky he’s mine.
I’m Mackenzie, wife to Justin and mama to three beautiful babes. My husband and I met in a Kansas City bar in the summer of 2007 and we’ve been together ever since. After graduating college in 2008, I officially moved to town, Justin and I bought a house in Olathe, got married and started our little family. We’ve called the KC-area home for almost 10 years now! I work full-time for a small marketing firm and spend what little free time I have loving on my kids, attempting a little DIY here and there and blogging over at Baby by Oakley.
