A whole gamut of emotions occurs when your child is needing surgery. You cannot avoid the feelings of fear, doubt, and anxiety that simply come with navigating the terrain. Yet, you also experience a sincere hope, trust and peace knowing that the long-term benefits far outweigh the short-term strain. James was a champ today. We woke him up nice and early at 5:00 to get him to the hospital for 5:45.
Today, being surgery day, Day 0, we found ourselves wanting to write specifically about the expression of gratitude that flows through us toward all those that have been a source of life for our family.
SDR surgery is a life-long gift to James. He will now live without spasticity pulling at his muscles, stiffening his movements, scissoring his legs, initiating pain and “fighting against him” as he works towards his goals.
This gift of SDR was channelled first through the tireless efforts of his mother who has researched, made numerous connections to a variety of therapists and medical practitioners and has sparked new heart warming friendships within the beautiful community of people that have CP or are parents of kiddos that have CP.
Alison has truly devoted all of herself into the pursuit of seeking “the good” for James. She is truly deserving of the title “warrior”. If love can be summarized as ‘the gift of self for another’, I can wholeheartedly attest to the fact that she frequently has James and his well-being on her mind before her own. She has shown James in his young life the gift of trust, love, and safety, alongside the values of grit, perseverance and tenacity - all of which James will need to draw from in his lifetime.
This gift of SDR for James is also largely channelled through the love of our family, friends and community. Literally, hundreds of people have given of their time, effort, money, prayer, and concern for James. As a family, we have been on the receiving end of a wave of generosity to raise money for the surgery and rehabilitation costs including:
donations through our GoFundMe campaign and Handi-Care Int.
Kaylea Beveridge’s “Share the Love” photography event
the Bracebridge Birthday Carnival and Yard Sale hosted by Phenix and Journey
Deb Nash’s High School Quilt Sale
Lennox and the Potter family birthday donations
Hannah Wright's triathlon in "Long Course Weekend" in Wales for James
Emily Penner's Bake Sale at Oxford University Press
Caleb Petke's charcuterie/cutting boards sales
the Journey with James Michael Pub Night Fundraiser at Fionn MacCool’s
the Step Onto The Road Concert
the Mike Gregoire Memorial Golf Tournament
the Hope Cup Charity Golf Tournament
This kind of generosity flows out of the goodness in people simply wanting to give, wanting to bless a little child who is on a different path. Alison and I are truly moved at what happens when we share in the journey of our lives with each other. When we lift one another up in prayer and when we choose to not close ourselves off from the world, but to open yourself up in willingness to travel alongside one another throughout life's adventures.
You have shown James that instead of being pushed to the margins of society, which has historically been the place for people with disabilities, he has instead been valued, worthy of your time and affection. You have revealed to him that he matters and that his well being is important, as he too, is a part of humanity, in all its diversity, that we share together. The care of so many has gone into blessing our little boy and we are eternally grateful.
James has already woken up feeling quite agitated and uncomfortable. We have been told by nurses and other parents that this is normal and to be expected over the next few days. We are here in the hospital for five days not including today (Day 0).