Celebrating World Down Syndrome Day
In honor of World Down Syndrome Day, I wanted to share my personal journey with my son Jace.
Jace came into this world on October 2, of 2014, and 12 hours after his birth we were informed of his Down Syndrome diagnosis. Jace spent the first 10 days of his life in the Neonatal Intensive Care Unit (NICU), and during that time we quickly had to adjust and come to terms with his diagnosis. I have to admit, I really struggled with Jace’s diagnosis in the beginning. I worried a lot about the future and the fear of the unknown – which I now know are normal thoughts that many parents have when they find out their child has a disability.
But luckily, our lives were soon touched by our local community. While Jace was in the NICU, we received a care basket in our room from an organization called Adele’s baskets, which truly changed our lives. Adele’s baskets’ mission is to provide comfort and joy to families who have a baby born with Down syndrome in the Calgary, Lethbridge, Red Deer, and Edmonton and other areas of Canada. They aim to raise awareness and provide families with the necessary resources on Down Syndrome prenatally through to the first years of life. They want to assure new parents that Down syndrome isn’t scary and help them celebrate the birth of their child, instead of focusing on the “I’m sorry” that many of us often hear from doctors, nurses, and others.
Adele’s baskets introduced us to a whole community of supportive families who were going through the same journey we were. My wife and I are now actively involved with the organization – my wife volunteers for them making delivery baskets and I have had the opportunity to speak with fathers of babies with Down Syndrome and share my experience, provide them comfort, and answer any questions they have. Most importantly, the main message we want to relay to parents of children with Down Syndrome is this: it’s going to be okay, this is still a celebration of life. I encourage you to watch this video to learn more about Adele’s Baskets and hear from me and my wife, as well as other parents, on their experiences raising children with Down Syndrome.
I’m proud to say that Jace has grown into a funny, active, and loving boy. Of course, his life comes with challenges, but I couldn’t think of doing this any other way. Jace has integrated well with his peers in and out of school and is doing great in third grade – I can’t wait to see where his future takes him!
The support of our communities, both outside work and at Commvault, has been amazing. Not only are we involved with Adele’s baskets, but we’ve also connected with our local Down Syndrome community through PREP and SuperHEROS – two programs Jace has been actively involved in. These two organizations aim to inspire families on the journey of inclusion for their child with Down Syndrome.
A year after Jace was born, I joined Commvault, so Jace’s journey has been a part of me for my entire career here. Commvault has been incredibly supportive over the years, giving me the flexibility I need to help Jace. And joining our CapAbilities Employee Resource Group (ERG) has been an amazing way for me to share my story with my fellow Vaulters and raise awareness. Our CapAbilities ERG’s mission is to create a safe and empathetic space where Vaulters with disabilities, caregivers, and allies can openly and honestly have discussions and drive change together. This past fall, Commvault sponsored a table at PREP’s annual fundraiser, Let’s Talk Hockey, a night with members of the Calgary Flames ice hockey team. I attended the event with some of my team members and customers too – all proceeds went directly to the PREP foundation.
On World Down Syndrome Day, I’m celebrating how Jace’s extra chromosome makes him extra perfect in our eyes. We honor this day across the world by wearing mismatched, or funky socks, for a few reasons. First, the karyotype (a picture of chromosomes under a microscope) of someone with Down Syndrome looks like paired socks. Another reason for wearing mismatched socks is to celebrate our differences and encourage conversations about diversity, inclusion, and acceptance.
Jace and his brothers, Jett and Nash, rocking their socks for World Down Syndrome Day!
My goal is to continue to spread awareness and provide opportunities for Jace, and other children like him, to live their best life and make a difference in this world. Every life and every baby deserves to be celebrated. So grab a pair of mismatched socks and rock them today!