Yesterday marked the start of National Down Syndrome Awareness Week in Canada. A year ago, I awkwardly posted on this same occassion on celebrating being. Ella was 5 months old and I hadn’t quite found my way in this world called “Down Syndrome”. But I have since, had a chance to sort through the books, pamphlets, therapy, organizations, and thoughts and I am starting to find my voice. I am starting to see the role I can play as a parent and an advocate. Down Syndrome is tricky, because it isn’t consistent beyond the extra chromosome, and individual symtoms affect some and not others. And although it doesn’t affect the same number of people as say, cancer it still needs attention. Why? Because as a parent I want Ella to grow up having people recognize the other 46 chromosomes, giving her equal opportunities to learn, work, and grow. I want her to have access to the therapy she needs and the treatment she deserves.
I had to think hard about why the diagnosis seemed so daunting and I said, “I guess because I knew it would take Wyatt much longer to learn to do things.”
Noah took a sip of water, then looked straight at me and said, “Mom – what’s so sad about that?”
Indeed – what’s so sad about that? I was speechless, relieved and proud beyond words. “Not one thing Pal,” I said as I watched him consume more pancakes.
He continued by listing things Wyatt could do; all the skills cherished by a six year old, like wrestling, or roaring like a T-Rex, or coloring with his big brother. Noah had learned to focus on the abilities his brother has, when so much focus is often placed on his disability. What an amazing gift to be given at such a young age. I wanted to run home and write this new mantra on my fridge or get a T-shirt made up …“What’s so sad about that?”
My new mantra came to mind the next week when an email arrived from a friend titled “in need of advice,” as a family in her church had just received the “life altering” news their daughter has Down syndrome. Yes, I thought, Wyatt has altered our lives, and yet mostly in ways I never would have imagined. I did not know Wyatt would be born with DS, but I also had no idea he would be born with such incredible ice blue eyes, or that he would grow to have a voracious appetite for books or that he would open corners of my heart I never even knew existed.
After Wyatt was born, and the diagnosis seemed overwhelming, I began to question our family’s plan to adopt an African orphan. This time it was my husband who revealed the wisdom his second son had bestowed. He said, “Wyatt has showed me that every kid, regardless of where they were born, and what issues they might have…they all just need love and a chance to thrive.” Thanks again Wyatt.
I started typing a response to the email. “Let your friends know the sadness will fade,” I wrote, “tell them – do not worry that she will not learn, but open your hearts to what she can teach. Tell them to expect to be dazzled by her accomplishments and by her capacity to bring them joy in the simplest ways. And tell them, yes – your life will be altered forever.”
What’s so sad about that?
Not one thing.