The 3rd Father's Day since Natasha's diagnosis.
Father's Day 2015, Natasha was about half way through her first round of radiation treatments (33 sessions in that round). Her face was bloated from the steroid meds. Her school was organizing a big fundraising event "Movie Night" with music, food trucks and auctions. We were planning a trip with friends to Mexico after her radiation treatments. This trip was the kickoff to a 'summer of a lifetime'. We had just connected with TheTruth365, which would propel Natasha's fight to a level of publicity we could not yet imagine. We were experiencing fear, hope and excitement. We were still in shock. Natasha was mobile, articulate and determined to live life to the fullest. "Stay Happy and Live Long"
Father's Day 2016, Natasha could not transfer herself from her wheelchair to her bed or to the toilet. She could not speak a sentence without stopping to catch her breath. Her left arm was not functioning, her right arm so weak we had to do everything for her. She felt fatigued a lot. I took leave from my work for two reasons: To help with Natasha's daily care needs and to spend as much time with her as possible. Our friends were gathering around us organizing meals and helping hands for all kinds of errands. We had begun the process of setting up palliative in-home care. We were consumed with the day to day caring for Natasha, trying to make her as comfortable as possible in a body she felt trapped in, a body that was quickly shutting down around her. And because DIPG had not affected her cognitive functions, she remained fully aware, witnessing all that was happening to her, while becoming decreasingly able to communicate her thoughts and experiences. She was 12 years old. She posted her final blog earlier that June.
Father's Day 2017, I'm sitting here reflecting on this, as I often do. We are also planning CureFest Canada coming up in September. Through social media we know of other kids who get cancer, who get DIPG. We learn of their diagnosis, their fight and their death. I recognize (no, I know) the hope and despair of the parents. I want to turn away, but I can't. I have to continue to look at and to talk about childhood cancer. It's a part of me now. It's a part of all of us who cannot accept that the amount of kids that die each year from cancer is somehow acceptable or tolerable.
I am learning about grief. I get it now, how the death of a child is not just about the adjustment to the loss of the child. It's not just about the fact that the child is no longer present. Everything has shifted. Cancer is terrible. Loosing a loved one is terrible. My experience is loosing a child to cancer. It's terrible. I'm sad and I'm tired of being sad. It's not like it was shortly after Natasha passed. It's not as 'burning'. Is it better now? In some ways. It's more of a deep ache with flare ups of burn. I have flash backs. I guess I'm trying to find the 'new normal' which will never be 'normal'. I miss her so much. I'm glad she isn't sick anymore.
My relationship with God is evolving. It's complex. It's personal. It's simple. He's a good God.
Do I like a sympathetic ear? Sure, I do. Does it bring comfort when others can empathize, when they can identify with me? Absolutely. But I want more than that. I want our society to say "We are not OK with the amount of kids that get cancer. We are not OK with the lifetime maladies and disfigurements pediatric cancer survivors face. We are not OK with the number of kids that die each year from cancer, that it's the 2nd leading cause of death of our children, the number 1 disease cause of death. We are not OK that many treatments and medicines have not changed in 40 and 50 years or more. Not only are we not OK with all this, we find it to be abhorrent. We are compelled to do something about it."
Father's Day. To be honest, it was mostly a 'Hallmark Holiday' in my eyes. Nothing to make a big deal about. Not any more. It's a reminder.