HOW TINA BOILEAU LIT THE WAY
Jonathan Pitre’s mother showed me what hope is, Donna Casey says.
On a beautiful September morning in 2016, I sat in my car in the parking lot of an east-end shopping centre and wrote a message to a woman I had never met before, but who had the answers to the questions that were hounding me day and night.
Our 14-year-old daughter was at the Children’s Hospital of Eastern Ontario. Six months earlier, she had been admitted to CHEO for treatment for anorexia. Our girl was in the grips of a merciless and devastating illness that felt like the darkest cave with no light and no way out.
Her life was in danger and we could not see the path ahead.
I needed to talk to Tina Boileau.
Like thousands of others who read about Tina and her son Jonathan Pitre’s daily struggles against epidermolysis bullosa (EB), I tried to understand how Tina stayed strong to shield Jonathan from a thousand stinging arrows flying from all directions.
Mothers will do anything for their children and would trade places in a heartbeat if they were in pain or danger. However, the reality is, the sheer primal force of your love sometimes cannot take their hurt away.
Some days, your hard work, support and determination does a world of good. Your child feels supported and the brain or body that is on fire feels a bit less tormented than usual.
However, other times, your best efforts run up against the cruelty of the illness and as you climb over the sand hill, the sinking feeling starts and you think the words you don’t dare to whisper aloud: How long can I keep going on?
On that September morning, I wrote a direct message to Tina on my phone. I recounted our story and how difficult the previous few months had been for our family.
I told Tina that I thought of her and Jonathan often and that I looked to her as an example for me: How to stay focused, take deep breaths and look up at the sky so I could keep helping my girl to fight a cruel and brutal illness.
I told her that we fought sadness, fear and hopelessness every day, and sometimes we just tried to get through the next hour.
I wrote that I just wanted my child to be out of pain and to have the life she deserves, full of promise and hope. As the mom of an ill child, I wanted to let Tina know that she was not alone on her illness journey.
You are a complete warrior of love, I said.
I offered my prayers for her and Jonathan and my wish was that her strength would keep coming and every moment would bring them closer to home.
Later that day, Tina replied to me, thanking me for my message. She wrote that life has a way of giving us obstacles when we least expect it and when we are not ready for them. She wished our family well and that the nightmare we were living would bring all of us closer than ever.
Our kids are everything to us and they give us strength to keep going, she said.
From watching Tina, I learned to give my child hope and help her move forward when she cannot do it by herself. Sometimes, it may mean holding on by the skin of my teeth or tearing up and rewriting plans. What matters is what you do next.
Tina, you lit the path for Jonathan and in his 17 years on Earth, he grew to be a giant of a man. You showed me how to keep going when I didn’t think I could go another step.
Thank you for the legacy of love and hope you have inspired in me and in countless others in our community.