RUSSELL – It is no exaggeration that the death of 17-year-old Jonathan Pitre has rocked the nation.
Known as a butterfly child because of skin as fragile as that of a butterfly’s wings, he bravely battled a severe form of the excruciatingly painful skin disease epidermolysis bullosa (EB). Sadly, despite persevering against all odds as he raised awareness for this horrible disease, he died on Wed., April 4 of septic shock in Minnesota where he had been seeking experimental stem cell treatment.
Tributes have poured in from across Canada, with even the PM tweeting his condolences, praising the “courageous and determined fighter who persisted in the face of every challenge, and who inspired so many.” The Ottawa Senators honoured their fan and friend with a butterfly and J.P. on the backs of their helmets during their Friday night game against Pittsburgh. Facebook has been flooded with images of butterflies.
Jonathan’s story actually hits closer to home. He was not from Ottawa, but Russell, and Russell Mayor Pierre Leroux said it best, “He was part of our family. To have somebody so inspiring in the community and to hear of his passing, just makes your heart sink.”
His immediate family, and more specifically his mom, Tina Boileau, has been there every step of the way. Boileau dropped out of university to be his caregiver. She was by his side when he died. She was his champion, rock, best friend, everything.
On her Facebook page, Boileau thanked everyone for their understanding and continued support. She also added, “My family and I are now requesting your understanding in respecting our privacy as we reunite as a family to support each other in the challenging days ahead as we grieve the loss of our son, brother, grandson and above all a fearless warrior.”
Jonathan is now at peace. He has broken free from the cocoon of his diseased skin and is stretching his wings, pain-free, like the butterfly that he is. His mother is only now beginning her story as she comes to terms with life without him, a life, she said, that she cannot begin to imagine.
I am a mother. I, too, have an ironclad bond with my son. I have spent his whole life fighting for him, protecting him, comforting him from dangers real and imagined, and, mostly, being the breath in his lungs when he suffocated from circumstances that no child his age, or many adults, could understand.
Despite this type of shared bond, not even I can begin to imagine how Tina Boileau found the strength to call off resuscitation measures as her son was dying, how she held him gently and comforted him as he took his last breath.
She will need her strength now even more to face the never-ending chasm of emptiness as she reinvents her world. I like to think that the ferocity of love goes both ways, and that in his final moments, Jonathan gave his mother the gift of his strength so that she could go on.
It is often caregivers who retreat to the shadows in the face of such public attention. Often, they never get the recognition they deserve, perhaps in fear of diminishing the accomplishments of the sufferer. In Jonathan’s case, that is impossible. He seared his spirit, his passion and his fight onto the world. He will not be forgotten.
Neither should Tina Boileau.
Rest in peace, Jonathan Pitre, and live in peace, Tina Boileau.