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.

Wednesday, 23 August 2017

No guarantees

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 bodies.

That speech led me to a Christian doctors' explanation of why God takes our children. It brought me comfort when he said life is a training ground, our world is about learning and growing and for some children their souls have already learned what takes some (slow learners) many many more years to learn. He used the term old souls, which is how so many who knew Xavier would describe him. He did seem to know and understand far beyond what you would ever have imagined a child should. It is their soul that chooses to "graduate" to Heaven with our Father. He went further to explain how our universes combine and our loved ones are not gone, but changed. They, like God, live among us in ways our conscious minds cannot fully comprehend.

In stark contrast, my next lesson was how God does give our kids cancer. He chooses who and uses pain and suffering for the greater good of others. It is not as a punishment to anyone, but rather a way to grow us, to give us opportunities to submit to Him and have eternal life with Him. She says it is our own perception that our children are not to die before us, but that was never a promise God made to us. We made up our own rules and judge His plan with our tiny view of the universe. Our children are His children and our role as parents is only temporary. How are we to question when or how he takes His children back to Him. Like any parent, we may make decisions for our children they do not like, but it's for the greater good. His decision to "take back" his creation we know as our children does not make sense to us nor do we like it, but it has a greater purpose beyond us.

Each explanation has its merit. Each one I believe speaks some truth. The latter is much harder to swallow, but yet makes sense that everything in our lives has been preplanned by our creator. However, it does not necessarily reflect a loving God in our small world view.  I am not sure I can accept that noone dies too soon or wrongly, except that I believe everything happens for a reason. But what's missing is the influence of evil. What is evil if a murdered child is God's plan?

In searching my own soul, I see a growing intimacy with Jesus I had only scratched the surface of during Xavier's time on earth. I had faith, so why did God need to do this? Would I not have strengthened that relationship if Xavier hadn't died? How did He know I would grow closer to Him and not reject him as could quite easily be the case.

Although it is again the natural order of things for  child to die, whose order is this? It is our own human belief that this is the way it is to be. No guarantee.

Monday, 7 August 2017

Diary of a Grieving Mom: Sick with emotion


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 connected to the life of another person... so if so many kids weren't dying of cancer those scientists and researches wouldn't have purpose or find that cure to help so many. But their deaths are a sacrifice for someone else's life... it sets off chain reaction the ripple effect. So again how do you choose which lives will be affected? 

My realities are so messed up. Now when I look at pictures of us all together it feels like a dream. Having that life with you seems so distant already that it feels like it was never real but only in a dream I had once. 
I dream now of a life with you forgetting we had one. 
The longer we are without you the more that life feels like it's fading and hurts more because it's forcing me to live in this new reality without you. I am trying so hard to hold on to you it's not healthy I know because it will keep me suffering 
I forget that there was more in my life that made me happy than just you.
When I look at your picture from years ago when you were well and looked like the old Xavier I can do it without crying at least for a few moments. But one glance at a more recent picture of you and I am full of tears. I hardly recognize you after seeing pictures of you well. I didn't realize how much you had changed because I was with you as you changed and we didn't usually have so many pictures around from years before. It makes me so sad that you had to go away even before you went away. 

"The goal of grief is to say goodbye to our child on all levels, to embrace the contribution our child was able to make to life and to exercise gratitude for the life that was, albeit all too short. To identify and express anger as a natural, human response is one of the steps on the way to recovery."

I am sick with emotion.
As the day goes on I fill with anxiety, wanting wishing for the day to be over. It happens day after day the feeling washes over me again as I yearn for this day to be over again and again. 
My days are long and hard only tiny slits of sun peak through 
My mind is racing yet to an outsider I am hardly moving I am left with no energy as I try to make sense of the incomprehensible 
I hold in so many tears yet it feels as though I cry waterfalls every day 
I wonder how others have made it through 

July 29
Mark just found a cassette tape in his garage stereo and it was Led Zeppelin ... of course Xavier's favourite 

The simplest things bring a lump in my throat like watching a fluffy feather float from the tree to lay on the ground in front of the kids playset. My thought immediately drifts to Xavier in Heaven. 


Aug 1
Today we head out for our first family vacation without our whole family. Going away without Xavier seems so wrong and fills me with so many mixed emotions. It's a step in the right direction towards our new life without him physically here but not without much pain. 
To say I have bad days is an understatement. These so called bad days split me open again to the very core. I feel every fibre of my heart breaking apart again. I sob uncontrollably and I lay in fetal position wishing I could go be with Xavier. It's in those moments that I don't think I can do this... the pain is so great I lose all sense of control. The hope I may have had yesterday dies and I wonder how others have survived this misery, this torture we know as the watered down euphemism grief! 


Aug 3
Vacation without you
It's been so hard to enjoy our only summer vacation but it's too hard without you. You have been on my mind every minute here. 

August 5
Had a dream last night about a big tornado. The weather was terrible but as we (was with friends but could exactly tell who) looked beyond the darkening clouds it looked light. We watched and saw the dark blue and grey clouds with pinkish orange sky underneath. Long fingerlings shot out from the bubbling cloud reaching both up to the heavens and to the side of the cloud before appearing to come down. At that point we ran to the basement for safety. It didn't take long and the storm was over and beyond was sunlight and calm. 

A crashing awakening

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 inside me. 

It all started with a song. A friend on Facebook had posted a song. Although I can't remember the title of the song, it resonated with me so I clicked the link to listen. The song was good, but I was curious to see what else this musician had done. That's when I came across a song featured in the Christian movie The Shack. Immediately I didn't care about the song. I was intrigued by this movie after reading a short synopsis about a grieving father who lost his daughter. 

I watched the movie. Then I watched it again with my husband. Both of us in tears as our hearts and souls grappled with the messages from this movie. I still wanted more. So I found the book at the library and read it within three days. It was so much better than the movie but most are. 

Nothing happens for a reason. It was meant to be that I stumble on this movie that gave me some peace, some explanation to ease the pain of losing Xavier. Yet at the same time it made me question so many things and left me longing to learn more.

I started googling. I picked up the Bible and began reading scripture. I searched my own heart and continued to wrestle with ideas about life, God and the universe in my mind.

God is good. 

I don't blame him for what happened to Xavier. He is not the reason for my pain. But He is using this experience to pull me closer to Him. 

He is speaking to me; in my dreams, in meditation and in my heart. I never understood when people said God talked to them, but through my experiences with Xavier I am seeing, rather feeling this. 

I know when he is telling my heart something. It's my heart not my mind that I listen to. He is here with me and helping me figure this life out without my precious son Xavier. 

I get Him more now than I ever did. Do I have questions, yes of course. Do I still have doubts? Yes, of course. But I am learning to trust what's in my heart, that intuition. And when I can do that I know I am trusting God. 

Since making releasing blame for Xavier's death, I have felt more peace. An understanding for what it's worth and that as much as I miss Xavier, life still has a purpose, although I am not sure how or what it is. 

I am beginning to consciously recognize an existence beyond what is seen. To know that earth, like our bodies, are only temporary shells for which we live. Living is not a place, life is not a thing. I want to surrender, to unleash the control I think I have on life and just be. I have felt the connection to a greater being and I am hungry for more. 

My relationship with Jesus is the closest I can get to Xavier right now. I want to know His spirit. I want to see Xavier again someday in the Heavens with God. 

I am a child of God. 


Spiritual relationship 

Tuesday, 25 July 2017

Hauntings

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 acknowledge.

Monday, 24 July 2017

Diary of a Grieving Mom: If only Google had the answers

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 intense. I don't see how it will ever dissipate. I long for you every day Xavier. 

July 10 
My tears are like the rain today; gentle yet constant 

July 11
I finally had a dream about you. It has been almost two months and you had not shown up in my dreams. Last night I dreamt I was telling people you died and talking about the loss when the dream suddenly transformed into you being there. You were at school where you loved to be and were running around in the hall with other kids. You were running! You were happy and it brought me comfort because I needed to know you were ok. Thank you Xavier for showing me how much fun you are having. It was a new memory of you and I look forward to having more with you ❤️

Date Unknown
Every time I look out into the backyard these days I see a robin. I think of you every time. But the thought crossed my mind tonight about the winter. You go away. There will be no robins. How will I know you are around. There will be no robins, no rainbows when the snow falls. Just cold. We didn't get to talk about that. I was just happy to get something out of you at that time ... to tell me one thing and shake your head when I said the right thing you would send us as a sign. But I never thought about the winter. I was in the present which they say is good but ...
The hole
(taken July 19 at London Regional Children's Museum) 
This picture says it all. As soon as I went to take it my heart sank thinking about how Xavier's face should have been in the other hole. I almost stopped from taking the picture because it was too hard to bare. This hole is representative of our life now. There is an empty space - a hole in our hearts. I can put my face there or anyone else's but it's never going to be Xavier's ... it will never be the right fit. 
I like to go places and do things we always did with Xavier because it keeps him alive to me. But it hurts. When I see where he was and where he still should be beside his sister I can't help but feel sad. But when I don't do that and do something new he never was, I feel as if I am forgetting about him. It's an internal tug of war to try to fill or cover the hole left inside me.