I remember Down Syndrome, coming into our lives via an awkward conversation in a hospital room, No. 157 to be exact. I was tired, overwhelmed but so blissfully, unbelievably happy with my newborn son chirping from a bassinet just feet away.
I probably couldn’t have stated a single DS fact in that moment; I just thought “bad” over and over and over again.
I remember Down Syndrome, making us apologize to the uncomfortable doctor as if it was his inconvenience we placed in his world instead of the other way around.
I remember Down Syndrome, stunning my husband, my best friend, into a numbing silence for hours. Until he broke down in the dark hours later, dreams of baseball streaming down his cheeks and apologies from him to me as if it was all his fault.
I remember Down Syndrome, a deep secret we held onto in privacy for days before a positive chromosome test gave us no choice but to share, learn, educate, change.
I remember Down Syndrome defeating us for a few days, a few weeks. I remember getting so pissed off one day that this stupid diagnosis was winning; that sympathy cards from strangers were not a proper substitute from Congratulations cards from loved ones. We still had a new baby. We still had a healthy new baby.
I remember deciding, very early on, that Down Syndrome would never beat us again. I remember vowing to defeat it every day for the rest of my life.
And so while the early days of August 2010 destroyed us because of Down Syndrome, we now have March 21 every year to reflect on the normalcy and beauty of our life. We now have the memory of the journey to make us stronger, to carry us through, to make us work harder and spread the word of our amazing son and the power of his big blue eyes.
So this month we’ve shared facts and dispelled myths about Down Syndrome; truths we learned the hard way and first hand.
This week, we created a video of our son and some of our favorite moments — the accomplishments, the giggles, the smiles, the everyday things. I’m so proud of those four minutes, and the words “let my love open the door” repeating over and over as my child smiles at me.
And now today, my two guys are joining me at the local TV station to share our story, Zack’s story. To tell as many people as we can that we have not been beaten, destroyed or even let down by this diagnosis.
When tragedy befalls you, don’t let it get you down. Love can cure your problems; you’re so lucky I’m around.
Zachary had his surgery last week, and as minor as it was, try telling a mother that anything involving a hospital and her son is minor. I was one big hot mess. I couldn’t focus on anything but my hatred of Down Syndrome and the fact that it brought this cheesy, colorful hospital into my world; that we had to go through worries our friends (fortunately) don’t have to experience. I spent two hours in a waiting room trying to go through the motions of a conversation with my husband and the eating of a simple snack. I spent two hours internally cursing the cruelty and unfairness of the hand Zack had been dealt.
But then I had my little man in my arms; he had wires and IVs and he was having such a tough time coming out of the anesthesia. His heart was racing and the tears couldn’t stop coming. I held him as tight as I could and sang “You are My Sunshine” just like I have almost every night since he was born. I watched his heart rate slow, I felt his fingers work their way through my messy ponytail. And I knew we would all be OK.
There are some days, I just pull my son close to me and I cry for or about Down Syndrome.
There are some days my heart aches at the realization I may never hear him say “I love you, Momma.”
But he can show me his love. And his love has shown me so much already. His love has made me a much, much better person.
And I will share that love, share these lessons, every day for the rest of my life.
Zachary is the best thing to ever happen to me, to us. And it has everything and nothing to do with Down Syndrome.
I remember thinking Down Syndrome was the worst thing ever. I remember Down Syndrome having the upper hand.
I threw out every sympathy card; I burned some bridges; I made some changes. I grew my Fierce Love for my son. I let no one get in the way of that love.
I remember Down Syndrome bringing us unexpected support. I remember Down Syndrome bringing us new friends; friends-for-life-because-of-what-we-share.
I remember when I beat Down Syndrome the first time; when I embraced it instead of shuddered away from it. I remember when we raised $2,000 for the National Down Syndrome Society last year. And the joy and excitement of putting together a new fundraiser in honor of Zack and our growing family this year. (I hope you’ll spread the word and will consider a donation)
I remember Down Syndrome. It’s kind of hard to forget.
But it’s not that “bad” after all.
There’s only one thing that can set you free — that’s my love. That’s my love.