Hi. I’m Steve, and what I’m about to share isn’t simply just a pump for an extremely worthy cause because there are so many – it’s an important piece of my life’s puzzle that I want to talk about and yet it’s an issue that’s still shrouded in a lot of mystery, maybe in part due to all of the other noise that occupies our thoughts and consumes our time and energy. But this is not just another charitable cause in a long line of causes that are worthy of your attention.
It’s really much more than that to me. I believe the greatest power we have to change the world is education and it’s with this in mind that I want to share my experience with something that’s very near and dear to my heart.
“Hypoxic Ischemic Encephalopathy”
On February 23 2013, Emery Ann was born at Scarborough Grace Hospital at 02:52 am, but unlike most of us and our first moments in life, Emery didn’t come out kicking and screaming. In fact, she didn’t make a sound. Emery was without oxygen for a long time. As a result she sustained a severe brain injury that would change her life and the lives around her forever.
In those first moments, a parent’s life flashes before their eyes. Questions flood the mind and pile on relentlessly.
“What’s happening? What’s wrong? How did I get here? What are we going to do? Is everything going to be okay?”
Having your baby rushed away limp, pale and seemingly lifeless right after her birth, without explanation, is a nightmare some parents never have the choice in facing, but they face it all the same. This is why it’s so important to talk about this issue. Because it can happen to anybody and the effects that stem from these tragic events are incredibly complex and far reaching. It’s important to acknowledge the entire
journey and not just where we are, but where we came from.
My journey with Emery started in July of 2017, the first time I met her mother. It was a day I’ll never ever forget. And, right off the bat, as four year old Emery walked into my life wearing a Karate gi there was no hiding that she was part of a package deal, and that she was a huge part of it all as it turns out.
From the very first moments I saw her, she made an impact. Little did I know then that that was only the first meeting in a relationship that was forged with her that’s since grown, evolved, bloomed and lasted almost five years now.
As I integrated more and more of my life, my kids and my family into Emery’s I realized I had a lot to learn. I also realized that suddenly I was invested in her and wanted to see her shine at her very brightest. I remember reading with her and her Mom at bedtime. I couldn’t believe how cute she was. She also spoke what we now refer to as term of endearment “Emery language” due to a speech impediment which affected how she used her tongue and mouth to form the sounds that came out.
But strange as it was at the time, we just seemed to speak the same language together immediately.
Over time, I saw firsthand a lot of highs and a lot or lows. The dark days were dark, the struggle was and is certainly real, but also I’ve had the pleasure of witnessing the triumphs.
Emery has a well in her heart that never runs dry. She is empathetic, kind, brave, fearless, and like her mother, she is a fighter.
Emery is beautiful. She is perfect. And yet there’s no denying that she still faces an uphill battle in this life much like all of us, but from a starting point of disadvantage.
For those of you who haven’t been affected but something like this or who’ve only had experience with neurotypical children, you need to understand that toxic positivity, encouragement and optimism can’t ever compensate entirely for what was taken away from her without her control or consent. But thankfully they can contribute to the long and evolving healing process that is inevitable after a tragic event like her birth story occurs.
There are still so many questions unanswered about her future and what she’ll be capable of in the long-run. The repercussions of these factors no doubt create a footprint too large to even measure at this point. The presence of her life has undoubtedly created a ripple and that has affected all of our lives together, as our family grows and moves forward.
Thankfully with the absolutely incredible team of physicians and support people at SickKids Hospital in Toronto, who have gone to bat for Emery literally her entire life, she has smashed the expectations given to her at the very beginning. That her outlook evolved from having severe cognitive impairment, likely needing around the clock support, potentially dealing with cerebral palsy using a wheelchair her whole life, to where she is now is nothing short of a literal miracle. She’s been a blindingly bright and shining light to her Mom, to me and anyone she’s come in contact with, when we’ve been in the dark at times.
She is an incredible big (and little) sister. And like a true leader, she constantly elevates everyone around
her. She is talented, passionate, joyful, hardworking and funny like you would not believe. In truth she still has so much to learn and so much further to go and yet ironically, it’s she who has taught me more than I’ve taught her up to this point.
Emery is a survivor. And although her story began in chaos, anxiety, fear, and heartache, it continues now in support, community, love and hope.
Emery’s story is still being written. So for those of you who have ever carried a heavy burden, who have smiled through the pain and have woken up day after day to do your best just one more time, I offer you my extreme gratitude and respect. Because you are truly transcendent and beautiful creatures that display
kindness, strength and love that helps us forget the darkness that surrounds each and every one of us.
If you want to support this cause and change the trajectory of so many kids lives who have been affected by HIE and their families and friends that support them, I urge you to make a generous donation to Hope for HIE or to SickKids Hospital as they continue to blaze a trail in treatment and medical advancement that has and will continue to change and save lives every single day.
Life is precious and so are you.
Finally, thank you Emery for changing my life forever and making me a better man and father than I ever thought I could be.
Hope inspires, Emery.
And so do you.
Love, Steven
xo
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