Today a woman I’ve never met, Heather, and her family had to say good bye to one of their three children. She and her husband have three sons. Their three year-old son, Zack, himself a twin, diagnosed with genetic deletion, a congenital heart defect and global delay, faced an uphill battle from the moment he was born. But today will be the biggest challenge his family will face, one that, as a mother of four, including twins, I could not fathom. You can read about Zack’s journey here.
I am familiar with Heather’s, and therefore Zack’s, story for two reasons. First is through the world of Twitter, which has exploded with support for Heather and her family over the past few days after news of Zack’s failing health was shared with us all. Last night, Twitter avatars with Elmo on them were popping up everywhere as a sign of support and affection for this little boy who loved to hum Elmo’s song.
I realized, however, that our paths had actually crossed months before at Wyatt’s Warriors annual fundraising walk in September 2010. My reason for being there was foremost to support my close friend, Laura, whose youngest son, Owen (she has two older children) was diagnosed, in utero, with Hypo-plastic left heart syndrome, a very serious, potentially-fatal congenital heart defect (CHD) that has already required multiple surgeries in the two and a half years since his birth. That day there were several teams participating, each in support of their respective child, each waging their own war. It was an emotional moment for me when, fighting back tears, I tried to explain to my now five-year-old son why we were there. Sadly, theirs are not unique stories, simply the ones about which we are made aware. Countless others are struggling with their own private hell.
Now, I’m just ‘the friend’. But I learned very early on that when you have a child born with a CHD you become very quickly immersed in a world far removed from ‘normal’. You automatically become part of the CHD community, the SickKids community and are embraced whole-heartedly, no questions asked, with open arms. Ironically, and my, how things can change, Laura was initially very reluctant to share her vulnerabilities with complete ‘strangers’ in forums or support groups. Fast forward three years and now she is Vice President of Wyatt’s Warriors, raising awareness of CHDs and making no bones about it. So it is no surprise that Laura knows Zack and his family.
And so we come full circle. Hearts are breaking today. The only difference is, tomorrow each of us will go about our daily routine. Feed the cat. Pack lunches. Bark orders at the kids. And slowly, we’ll start to forget. But try. Try to remember this feeling a little longer. This feeling right now. Tears gently slipping. Heart gripping in your chest. Imagine for a moment this was your time to say good-bye to your child. Time stops. Your breath catches in your throat. We take so much for granted. I know I do. I have four healthy children. I am truly blessed. I love them like crazy but, let’s face it, we are not perfect and we will continue to have the ‘off’ days where those moments of frustration threaten to bubble over and we can’t wait until they are safetly tucked into bed so we can regain some semblance of sanity. But now, at this very moment, I want nothing more than to just hold them. Smell their hair. Kiss their faces. And I will. And so should you.