Skip to main content

Memories of love

What is life all about? Love and that love is locked into our memories we make. And the best part about this lifelong secret is that it doesn't matter where or what your circumstance, you have the power to make memories full of love.
We did a lot of things as a family and went a lot of places and enjoyed some awesome vacations. But now in hindsight when we think of the love we shared, the best memories, the most special times together were right at home. If I can give any advice to anyone, is that don't make a big deal about where or how you make those memories. The true love you find in those memories are not something you can create with a trip somewhere or a new toy. 
The quiet moments reading together in bed, suppers together and Xavier being at home being Xavier are the memories closest to my heart. They were authentic. 


I have written more words since xavier died than I think I had written in 7 years. These words are my heart on paper and are pouring out. I do believe there is a book in there somewhere in the mess of parts scattered throughout the internet and my notebooks. The task of putting it altogether excites me yet overwhelms me. I want so much for my writing to be worthwhile and helpful to others even though it is so healing for me on its own. It is in my search for purpose again that I long to do something with my words. 

I hear myself  giving my daughter life lessons and have to think am I doing this? I told her we weather the storm but the sun always comes out. We work through the bad to get to the good that is always there. Somedays I don''t believe this crap. I don't think this wave of sorrow I will ever get through nor want to. I will grieve Xavier's death forever as it is a reflection of my love. I will love him forever therefore will grieve. Of course it doesn't mean I will sit on my couch everyday with a box of kleenex, chocolate and tea (although those days are nice). 

Time doesn't heal. It's what you do with that time that makes the difference.

In our need to be positive all the time, do we leave people out? Are we ignoring the elephant in the room?
While at Camp Trillium for the first time, I felt alone. I couldn't just forget that my son died a mere three months ago from the very thing everyone there was trying to run from. Death found us. And now I feel our family, the ones who we shared such an intimate journey with are now so far away from where we are now. And this community is scared. Scared of the very thing we are dealing with. So how do we talk about it?
What about the kids who have found their paradise off earth? Why are we so afraid of death? Maybe I am looking in all the wrong places, but more needs to be out there for the families who are the survivors. Xavier's body may have died, but he lives on in our family. While my life's decision always reflected what was best for him, my life's decisions will still be filled with him. Although he took a piece of my heart with him, he also lives in my heart I still have here. With that I can choose to be advocate for other kids like him, for families like ours.

Comments

Post a Comment

Popular posts from this blog

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...
Post a Comment
Read more

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 ...
2 comments
Read more
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...
2 comments
Read more