Skip to main content

One month since I said goodbye

Tomorrow will mark one month since you left us. It still feels like yesterday. I am having a harder time now accepting that you are gone. I looked at some pictures and video of you just one week before you died. I never would have guessed you would be gone 7 days later. You were happy. You looked good and we had moments of the old Xavier back. 
To think of those days makes it so hard to believe you were so sick that you would take your last breath so soon. To me you were still perfect and there was still hope for recovery or at least that you wouldn't get any worse. I miss you so much Xavier. Hearing your sweet voice only makes me cry more for you, miss you deeper and feel the hurt of the hole in my heart more. Our lives were so much better because of you. 
My selfishness wanted to keep you here no matter how many more surgeries, treatments and disabilities you had. You were still my sweet child I could snuggle and watch sleep at night. 
Now I kiss your urn and say goodnight to only a picture of you. 
But I know in my heart you would have stayed and fought if you could. I know deep down how much you wanted no more of the pain, the side effects and inability to be a normal kid. Keeping you here would have made our pain less but, would have made so much more for you. Especially if the doctors were right that it was the cancer that came back and not just the radiation necrosis we had so hoped would heal. 
Our 7 years together was full of so many ups and down but now the scales have tipped. You now have gone up ... up to a place so beautiful, so perfect and so amazing we can't even imagine. We are down... down here on Earth to grieve because we loved you so much. 
If only we could turn back time and rewrite the ending where there is no ending. 
It's not fair, it's not right I repeat over and over again. This hole in my heart is there to stay. But maybe,  just maybe this is a glimpse of the pain you held inside you as you grieved the life you were robbed of by this cancer. 
Some nights as I lay there crying I can almost feel you touch the top of my head and mess up my hair like you did to make me smile and stop crying. You never liked to see me cry unless we cried together. Those moments were so precious and I only wish you could be here to cry with me now. 

Comments

Popular posts from this blog

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 ...

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...
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...