In honour of Alyssa Rae’s birthday week, I am pre-launching a special event that will be taking place this SATURDAY, NOVEMBER 17th: a one-day only, online fundraising flash mob of hope, remembrance and love. Stay tuned, as I will be posting daily up to Saturday.
I will tell my story, which is the story of a first-time mother, new to Canada, who discovers her baby may not survive. It’s a story of pregnancy and birth and a sweet soul’s 20 days on earth. To help you understand what a miracle it truly was to be gifted those days with Alyssa at the hospital that would be her only home, I’ll try my best to explain her condition and how we were asked to surrender to the mystery of life, science and medical decisions.
Looking back, it occurs to me that Bruce and I remained intact and more resilient than ever, thanks to the support we received from family, friends, community and SickKids Hospital personnel including doctors, nurses, social workers, counselors and foundation staff. We owe them all a debt of gratitude.
Finally, I’d like to highlight the fact that while the staff at Children’s Miracle Network (CMN) hospitals are second to none, the expert nurses and doctors at SickKids Hospital are working in an outdated facility with faulty infrastructure that makes life harder for babies, kids and parents. There is an audacious plan in place to help. I’ll explain why we are ALL IN for SickKids Hospital and why anyone who experiences the specialized care offered at a CMN hospital, either through their personal story or the story of a loved one, is often moved to give back.
I have mixed feelings about sharing all this on social media. I don’t want to give the wrong impression, that I seek attention or pity, but I am determined to keep it real. Of course it’s sad, when any new parents are given booklets titled “The Loss of Dreams” and find themselves reading “A Broken Heart Still Beats” instead of “What to Expect Your Baby’s First Year.” It was life-altering to the point where I felt my DNA had been reorganized and my priorities would never be the same. I want my story to be a genuine truth-telling about children’s health care, which could really be called family health care, because when a baby or child is sick or injured, in many ways it’s the parents who suffer most. At CMN hospitals, the need to support the whole family is not just understood, it is an integral part of what they do. I hope my story honours Alyssa, touches you and inspires you to respond.
What we’re humbly asking is for you, dear friends, to open up to the idea of many people giving a small amount, to great effect. For just one day, next Saturday, you’ll be asked to click on the Donate button and give $20. The hashtag in play this week is #20for20 in tribute to Alyssa Rae’s 20th Birthday, in honour of the miracle that she lived for 20 days, and in recognition that a $20 donation is not only affordable, it is HUGELY IMPACTFUL when we all do it together.
The other hashtag I’m using is #Love4Alyssa, because we love saying her name, especially on her birthday. I invite you to share this post on your social media profiles and add your own #Love4______, filling in the blank with the name of a baby, child or friend you would love to honour as you spread the word about Saturday’s fundraising flash mob. If your not a facebook person, kindly forward this event announcement to friends by email.
If Bruce and our daughter Holly can spend six months riding to the Ends of the Earth for Children’s Miracle Network hospitals, if our youngest daughter Jossy can miss her Dad and sister intensely but bravely keep her chin up, knowing it’s for such a good cause, and if I can go out on a limb by pouring my heart out on the page this week, then you can act too, by donating on Saturday. Let’s do this!
Stay tuned for tomorrow’s post: Alyssa Rae Johnson, Pregnancy and Birth