There’s no damn timeline

Grief is forever.

You get that yet. I am still trying to accept this myself. Today is the 11th anniversary of Xavier’s tumour diagnosis and I am still crying at the thought of us rushing him to McMaster hospital for emergency brain surgery.

Some years this day and those that follow go by without a thought. Other years like 2021, it is a painful time of remembrance.

I picture my sweet little baby laying on an operating table for 12 hours. His tiny fingers and toes limp with anesthesia under bright surgical lights. That moment I last kissed his soft round head before it was cut apart.

The trauma lives within me.

Xavier has been gone almost four years now and over a decade since his diagnosis. But I still grieve. I grieve the day that changed our family’s life forever. I grieve the life he should have lived had he not had cancer and the life my daughter, his twin should have lived.

Maybe it’s PTSD but I can still feel the pain and the fear of this day 11 years ago. I can’t help but put myself back in that hospital watching the doctors poke and prod my baby before he disappeared into the back hallways for a preop MRI.

I won’t apologize for my tears and I don’t need sympathy. I need to grieve and I need to cry. I need to remember my son - even when those memories hurt.

Comments

The aftermath is MESSY

We are on the road to recovery! Physically, Xavier is improving daily with his regular physio and pure determination only a child possesses. He is learning to walk again and use his left side, all while building back the muscle he lost. He has at least another month of treatment left, but we are so fortunate we can manage it at home and at a dose that causes fewer side effects than he faced last month. Xavier is determined and I admire that in children. The lack of self-pity in kids we have seen on his cancer ward are so inspiring. Instead they use that energy to heal, and set goals for recovery. Still there are residual symptoms that are concerning. He is choking on liquids more frequently, suffering from reflux and is unable to move his toes on his left foot. Seems minor but as he tries to walk now his toes curl under his foot and trip him. Who knew how important straightening your toes are! But the lingering side effect of treatment ...

Ever since I learned how to write, I have been writing. I am not a professional, nor do I pretend to be. I am not an English major or a published author. I wrote the news for years (almost 10 if you count my years at my college newspaper). But the benefit of writing for me is not for money; it's for pleasure. Writing makes me feel good. Since I was 10 years old I kept a diary. I wrote down my thoughts, my daily activities and everything in between. It was my stress relief - how I figured shit out. I can trace every low point in my life to a time when I stopped writing for pleasure. Pen to a paper, fingers to a keyboard, I have to write. My sanity depends on it. So, here I go. I intend on writing about my life, about stories I have swirling around in my head. And maybe share some excerpts from my diaries as a child. If no one reads this, that's fine. It's not for anyone else but me. But if they do, that's ok too. If I can bring a tear, a laugh or a smile to someone e...

The dragon in his head

As far as my son knows, there was a dragon in his head. This dragon was big and scary and made him feel sick. But as far as my son knows, we stomped that dragon out. The idea of Xavier's cancerous tumour being a dragon in his head came from a movie that had been given to me by another mom of childhood cancer. Paul and The Dragon is a powerful 20-minute video of a young boy with cancer. Although it is generic (not about brain tumours), and there are no words, it is incredibly telling. For any family who has been through a similar experience, you will instantly connect with this boy and his family. And for my kids, who are very young and don't exactly understand medical terminology, the story is easy to understand and has provided a great foundation for how to talk to them about Xavier's journey with cancer. The movie was so popular among my kids that it became part of our regular Friday night movie rotation. My son even requested it while he was in the hos...

The Book of Me

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