If you haven’t had anyone tell you yet, let me be the first: Happy World Down Syndrome Day! Yes, that’s right. Today, March 21st, is a day to celebrate individuals living, and thriving, with Down syndrome. 3/21 is particularly chosen for this day of celebration because of the third copy of the 21st chromosome that is present in those with Down syndrome. Whether or not you have the privilege of having one of these amazing people in your life, would you please take a minute to hear our journey and celebrate this day with us?
My son Calvin was born in November of 2015, the third son born to us within three years. What a surprise to us when he entered the world at just 25 weeks, weighing a whopping one pound, six ounces. And then again to our surprise a week later we found out he had been blessed with an extra copy of his 21st chromosome, also known as Down syndrome. For so many this conversation comes with a negative bias and being told inaccurate things about the child’s future. That, thankfully, was not our story. We were met with compassionate words and reminded that, like every child, his biggest need was to be loved and treated with the dignity and worth that every one of our children desires and deserves.
Our journey since then has not been smooth, but it has been uniquely ours. Our son has fought for his life in the hospital on two separate occasions because of his early birth and Down syndrome diagnosis. These struggles pale in comparison to the love we have for him. We have fought alongside him, with prayers and tears for his life to be spared and for more years with him. We can’t imagine our lives without Calvin. His smile, sense of humor, the way that he lights up any room he’s in, and his ability to make his brothers laugh until they cry, are attributes that are uniquely his. We can honestly say that we wouldn’t change him for the world, or the road that we are on. It is a road that very few get to take and that is why we like to call ourselves ‘the lucky few’. We truly are.
If you get the chance to join someone on this unique journey, will you do me a favor? Would you consider making your first word, “Congratulations!” instead of “I’m sorry”? I know that from the outside looking in, it looks hard and it may be hard to relate to. But trust me, it is worth congratulating and joining them on the journey. After you’ve said that and helped your friend wipe away their tears, please share with them these amazing resources:
Jack’s Basket: Their mission is to celebrate every baby born with Down syndrome and congratulate their family with gifts, support, and resources. Anyone can request a basket to celebrate these amazing people and give them a positive start to their unique journey.
Gigi’s Playhouse: This ‘Down Syndrome Achievement Center’ provides numerous services and fun classes and events to families of individuals with Down syndrome. We have met some of our best friends there!
Down Syndrome Association of Minnesota: Connects families with others in their area for support groups and education on different topics related to raising children with Down syndrome.
Happy World Down Syndrome Day – to you and your family and to our Calvin.