Monday, 16 October 2017

"Mad-Sad"

Anger!
The young girl Tip from the Disney movie Home gets it.  

As the term suggests, it's when you get angry but deep underneath you are sad. In the movie, Tip is sad when she was separated from her mother by aliens when they invaded Earth. When Oh discovers what is underneath her anger, he says, “You are mad-sad”. What appears to be anger is really sadness and grief for her loss.

My grief, my sadness is the eye of a hurricane and around it swirls many other emotions capable of serious damage if managed improperly. Lately, anger has been encircling my pain. 

Anger is an uncomfortable feeling for me as I am not usually one to anger. It takes a lot to get me fired up and I typically try to diffuse anger in others because it's scary and unpredictable. A control thing likely for me.

But I am angry. I am not angry at anyone in particular, just life in general.
I get angry when I do something new or old where Xavier should have been with us.
My anger seeps out when I read about the lack of funding for researching kids brain tumours. I get angry I didn't get more time to spend with Xavier. I am angry at myself for going back to work while he was sick. Angry at how people value things and not people.

Angry that I have to deal with issues with my daughter that no 8-year-old should ever have to deal with. Angry with people who don't understand. Angry I can't sleep anymore.

Angry we have to start a new life without Xavier and angry that I could not save my son.

I am angry we are left here without him. 

However, I am learning anger can be healthy and a natural part of the grieving process. I have a tendency to push away anger because when I feel it I also feel guilty for being angry at all. I have to tell myself to let it out, scream about it, pound it out in words on my computer.

I need to use anger to my advantage. It is a driving force. In Tip’s case, it drives her to search for her mom. 

It's ok to be angry. My anger is telling me something is unfair, it's protecting my vulnerability and sending me a signal that something needs to be looked at within myself. My anger is calling me to action and it's my choice how I react. 

So I have decided to use my anger, to harness its energy and pursue a cause. I want to turn my mad-sad into positive action. I am choosing life not death. Not in the sense of physical death, but I am not allowing my anger to consume me or spiral out of control destroying what good I have around me.




Thursday, 5 October 2017

He will be remembered

Xavier Hayden Garrett was shy and hated being centre of attention. But he would be friends with anyone - most often the kids who really didn't have or make friends easily. 

He didn't need to make a big difference on a big scale. He made a big impact in a small group. His legacy is not known far and wide, yet the impact he had on those  special people reaches far and wide in their hearts. The world has forgotten him, but those people will not. He changed them forever filling them with a light that shone so bright within himself. Xavier was so true to himself. He never tried to be anyone but who he was and everything he did was consistent with his Being. Some people never get there. But he did and with everything he endured he never wanted pity. 



The world will forget him. Many people will forget the boy named Xavier who died of brain cancer. But to those who loved him and who he had a special place for in his heart will never forget. 
As days, months and years pass, the one time encounters with the small blue-eyed boy will be forgotten. The hundreds who may have seen him on the front of a local newspaper will have moved on and never thought again of the sweet boy who died. 
But that's ok. 

Xavier never would have wanted to be that poor boy who got cancer and died. He will be remembered by the most important people who touched his life and he touched theirs. He will be remembered by them as more than the boy who had an incurable brain tumour. 


He will be remembered by many, but fewer and fewer as the years go on. But in the hearts of those who knew him well he will live forever. Not the day he was born nor the day he went to Heaven will these special people ever forget. It's true love, it's genuine, it's a depth of ourselves he took with him and the pieces we keep here of him. I don't need a world to miss him, although I would love the world to know what an amazing son he was. All I need, is to know he will never be forgotten, always loved and living within those people I know who meant the most to him.

 His purpose was not to become a poster child for brain cancer research or childhood cancer in general (that's mine now) his service was love. His mission was not meant to reach thousands and thousands but to teach a whole bunch about the power of love; how love alone can bring joy and happiness to anyone in any situation. Thats why anyone who met him just fell in love with him. He didn't even have to say anything or even smile ... he just had a light about him that drew you in like a bug to a lantern. 

While most won't understand the depth of our pain and lifelong grief, they will remember him and love him forever alongside us. 




Tuesday, 3 October 2017

Hey! I noticed the flowers

This week as I approached my counsellor's front porch, I noticed a beautiful purple potted Mum sitting by the stairs. It had so many little flowers that together they made up a great big ball of purple flowers. I couldn't help but comment on the beauty of this Mum when he came to the door to greet me. 

Seems like a silly thing to write about, I know. But the memory of those flowers came back to me and that's when I realized their significance. 

In that moment I had been still enough to feel the beauty of nature. A heart-warming feeling of joy arose in my noticing these flowers. Simple yet profound. 

There was a peace about me in that moment that I could feel joy through a plant. It reminds how we truly are connected to everything because everything is connected to God's love. I feel blessed by this moment and it gives me hope that I will have more joyful moments where I am still enough and at peace enough in a world without my beloved son. 

It really is all about the little things. But often we miss those little things and when the bigger things happen we never see them as big enough to appreciate.  

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.