Wednesday, 13 September 2017

A new worldview

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 relax or forget the pain. I asked Jesus to carry my fear for me so I could be present with Xavier every day we had together. I felt Jesus holding me up when the fear was so strong I could barely stand. He held it back for me to experience moments of joy and appreciate life as it was. But the fear wasn’t gone. It was still there. Until the day you died. It was God’s grace – an unexpected answer to my prayer. Your leaving was the only escape from the fear. Xavier was relieved of his suffering and we were relieved of our fear. At first I wondered if God misunderstood my prayers. Maybe I messed up and should have prayed for Jesus to never take my son away. Maybe if I had prayed harder or longer things wouldn’t have ended the way they did. I never meant for it to be this way. I would have lived in fear forever if it meant I got to keep Xavier here. But I trusted God’s plan. My fear is now pain.But pain is a dimension of love. My tears are a release of my love for you. They say what my heart feels that words cannot.Fear showed up as anger. It made me tense and anxious. Since you’ve been gone I am not afraid anymore. I am not scared of death, of failure or what others think. To some, my lack of fear may appear like carelessness, but it is furthest from the truth. I care about how beautiful the sunset it, the softness of the grass and the turning of the leaves. I am not afraid to take a risk, to show a stranger love or if I didn’t get my house cleaned before company shows up. Since you’ve been gone “things” don’t matter. Things don’t make my life any better or any richer. I am seeing the bigger picture, but not yet fully accepting. Xavier’s death has turned me into something better, someone beyond this physical body I felt so attached to. Although I miss him beyond words, I have a peace within. 

There are universal "truths" we just believe as we go through life. A perceived "natural" order of things that are in our human DNA.

People die of old age. Parents are supposed to outlive their children. Kids aren't supposed to die. Suffering is bad. Life is eternal.

Why do we believe these things? Aside from life being eternal, which is written in the Bible, no where (that I have come across) does the Bible guarantee us a life free of pain, suffering or tell us the "right time" to die is when you are old.

We use this to create our own reality that in turn creates good and bad and unhappiness when the good doesn't happen the way we think it should. I read my first column in the first issue of  inspire magazine and found that I still see things the very same way then as I do now. The only difference is that I still had my son then.

This experience has not turned me cold or calloused as it may seen because of my disinterest in a materialist world. I thought maybe my compassion was gone as I have a hard time listening to others "minor" first-world problems. But in fact I am still the compassionate person I always was, I just see things for what they are... just things.

I don't see our world as doom in gloom. Losing my son opened my eyes to the connectedness we have with everything. The beauty of nature and all the little things that bring me peace that no big materialistic thing could do.

 

Wednesday, 6 September 2017

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.