The Book of Me

When my son died of brain cancer, things changed...  Disclaimer: Maybe I explain these things to myself this way because subconsciously I cannot accept defeat. Or maybe I am just trying to make sense of what cannot humanly be understood. Whatever it is, these are my thoughts, my crazy internal monologue, that bring me some peace as I grieve my son's death. Please don't judge.  Since you’ve been gone… I have not lived in fear.  For many months, even years before you died, my prayer was simple: Dear God, please take away my fear in exchange for strength. I said these words every night when I went to bed never knowing if tomorrow – or the next day or the next day - would be the last with my son.   Fear was often what kept us going. It was a blessing in disguise, but also a difficult way to live. As Xavier grew more and more tired of being sick, I grew tired of being scared. Fear of his death had gripped our family for so long. It never allowed us to fully r...

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 ...

I did it again. I went to google looking for answers to my questions. There is an explanation for everything out there, but whether or not I believe one over the other is up for debate. I first watched a speech by a bereaved sibling at The Compassionate Friends conference in Orlando this week. It is an organization for people who have lost a child. It was an inspiring speech of how the death has ignited positive growth within individuals who embrace it. The overarching theme was that love lasts forever. The most impactful thing this young woman said was life is not measured by the number of years, worth or by what we do. It is simply the love we experience and how that love never goes away as it always in our hearts and connected to the memories of our loved ones. They live within our hearts so that they can continue living and experiencing everything we do. They only get the chance to experience through the eyes of so many others and not in a single, self-centred way we do in our bod...

July 26 I can't keep track of time. For some reason I have been stuck back in the middle of July but somehow time keeps moving forward.  Lately it's the little things that get me ... like having the last kind of ice cream Xavier ever ate. He wasn't well when he had it but he still enjoyed what he could of it.  No kid should ever have to have their last ice cream at 7 years old.  Then the sad thought that when Mackenzie comes home from a night at her grandparents that Xavier won't be coming home with her. He hasn't just been gone for a visit. He is gone forever.  July 27 How do you choose God what child will get cancer and die? If you have our lives planned our paths already laid out how do you pick... do you ask them before they come to earth? Do you give them a choice at time of death? I don't understand how such a loving God could allow so many children sick and die. I get that it is a much bigger picture and everything matters and is connecte...

I have attempted in making sense of what's in my mind, my heart, in writing recently with little success.  This skill I thought I had for perfectly pairing words to make beautiful lines of symmetry have become a multi-vehicle pileup on 401 near Woodstock.  Words and thoughts colliding with each other in every direction and spinning out of control only to come to rest in places not meant to be driven.  And as this mess inside my head ensues, it slows every other function of my body. Much like the ensuing traffic jam after the crash. But somewhere, somehow, life goes on and traffic flows on other roads much like the lives of those around me. I am stuck in this misery, but it's only on one highway - mine.  See I have already veered off in a direction and travelled much further than had intended when I started this drive. There has been a slow transformation happening within me since Xavier died. I did not realize it until recently reflecting on these changes i...

July 22 Last night I woke up around Xaver's time of death. I was jolted awake my a memory. It was within the last three or four months of his life when Xavier came to me and told me about a recurring dream he was having. He had it before in 2015 when he relapsed and came home after being very sick. He explained to me how we were all walking together as a family, but there were big holes in the ground everywhere. He told me with fear that he fell into one of those holes and the rest of us kept walking. I am not sure the significance or whether he told me this or not but I always associate the colour purple with this dream. He remembered the dream from the last time he had it so vividly. It scared me to hear him have this nightmare again. I assured him we would never just leave him and walk away without him. I wish I had said more, validated this dream - this telling of his future that was in his heart and mind. He was being prepared for his own death, but I was too scared to ackno...

Date Unknown I am struggling so much these days  I am so lost and empty without you here Xavier. My life will never be complete without you. I want so much to spiritually connect with you ... to feel you somehow that I know I haven't completely lost you. I know you had to go, you couldn't live in the body you had. You needed to be free and that's why I let you go. But I miss you more than words. To have made you suffer more to stay with me would have been selfish, but I really didn't want to see you go.  So much pain ... beyond just what I feel, but how I feel for Mark and Mackenzie and our extended families  and friends who knew him well . I need to do something to honour your memory. You taught me so many amazing things about life, about childhood cancer and emotions.  I just don't know what yet.  What's the purpose of going through this Hell if I am not going to do something with the things I have learned from it all.  The pain is still so int...