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. 

My physical pain mimics my emotional pain.

I was recently diagnosed with a rotator cuff tear and inflammation in my shoulder. I was not surprised as I knew I hurt it months ago while carrying my beloved son around when he could no longer walk. I refused to see a doctor back then because I was not going to listen anyways. I wouldn't stop carrying him and I didn't have time for physio. My life was about his pain at that time.

But now strangely enough I find a parallel between this injury of love and the pain of loss now that he is gone. It hurts, a dull ache most days. At least once a day I do something that sends shooting pains through my shoulder and numbness into my fingers. Other times, I am just weak and tired. Much like my emotional pain of grief.

It's there, but you can't see it. And my should will never heal the same nor will I. My fragile limb is the physical representation of my broken heart.

In my agony of missing Xavier I said to myself how am I supposed to live when a part of me is dead?

But people do it all the time. They live when a part of them is broken. Whether its an arm, a leg, or my injured shoulder. I have found ways to cope with the  shoulder pain, to live with it but still do the things I needed and wanted to do. Of course it held me back at times, made me struggle to do ordinary daily things of life and makes sleep challenging.

I could remove my shoulder and arm and not have to live with the "dead" piece of me. But that wouldn't solve a thing. Much like grief. I can't just cut if off, (ignore it altogether) or I will never have a chance to heal. It would still leave me broken. At least with two arms I am still balanced. It just takes more practice to balance, to have my two arms work together again.

Again, like our lives now. Although I feel we are imbalanced without Xavier physically here, I can't imagine cutting that part out of my heart. I just have to find how to create balance with him in a different way. 1`q

Sunday, 23 July 2017

To be blunt...

Diary of a Grieving Mom: Social shyness

A moment of truth - after the loss of a child, social gatherings make me cringe. I can't even think of a suitable analogy to describe the mix of emotions. It is a sickening anxiety.
I speak for myself in my grief, but have also talked to others and read stories of others who share my dread of social gatherings following the death of our children. It all sounds good; a day or night out with friends or family. A pleasant distraction or a chance to have some fun.

But for the grieving mom, they are exhausting.

First off, we have to put on our mask. We have to pretend like we are ok, like we are living even though our child is not. But in reality, we are dead inside. Things are not ok and we hate life. For me, life stopped when my son's heart stopped beating. Everyone else's lives kept moving forward, and all we want is for time to stop so we can catch our breath. Pretending is hard work, especially for long periods of time. Who wants a miserable party pooper at their gathering to bring everyone else down anyways.

So, I put on my mask.

Aside from our blue moods, another reason gatherings are so difficult is that we have nothing to talk about but the death. As stated before, my life stopped the moment Xavier's did. What can I possibly talk about... how I cried three times instead of six yesterday. I feel I have nothing in common with anyone right now. I am in a heavy dark cloud surrounded by puffy white clouds. The only things I do now are those tasks that have to be done. Even those things I have to push myself to do. Anything I do beyond that is not for my enjoyment, but to keep my daughter's life somewhat normal. Maybe someone there would want to listen to me become a blabbering mess as I talk about the only significant thing that has happened in my life lately, but its not a great way to get invited to the next party.

I suppose I could just listen.

But, to be honest, listening to others talk about their summer vacations, workplace drama or life in general is painful. I want to be supportive and excited or even sympathetic, but I struggle. It hurts because I am stuck in my grief. I can't just snap out of it or move forward because grieving is a process we must go through to heal. To deny these feelings, this misery called loss, will only delay the process.

The grief is so intense I can't hide from it.

And then there is the awkwardness. Do you or do you want others to talk about your loved one? The fact I can't even answer that question right now tells me I am not ready to be social. In the first place, I don't want people to tell me they are sorry Xavier died. It feels too much like visitation all over again. And if they bring up memories of Xavier it will make me happy, but also sad. And then they will try to make me feel better with some good-hearted, but stupid comments like at least he is not suffering or he is in a good place (for which I am also guilty of saying). But, in those moments of pain, no words can console me. He is not here anymore and nothing makes that better or right.

But, to not talk about him at all hurts even more.

I will find the strength and one event after the other it will get easier--or so I hope.



Wednesday, 12 July 2017

Lost

Tomorrow is another anniversary I wish we never marked. But I can never forgot the time, the days, the weeks and now the months you are not with us.
July 13 is two months since you died in my arms. I think of those moments less and less every day and try to forget. But I can never forget. I miss you beyond words and hurt more than anyone can describe.
Every moment now is a reminder you are not here. When I make a food you liked or go to get the plates out for supper and only grab three instead of four. I think of you when I see the TV remote you always had control of and when I do laundry and never see any of your dirty clothes. And every day as I watch Mackenzie play by herself I feel a stabbing pain for her loss. No child should ever have to go through what my two have.
I try to be positive, put on a brave mask but behind it all I am broken inside and will never be the same. Xavier, you brought out pieces of myself I never knew I had. You made me stronger than I ever thought possible, and love deeper than ever imagined. When you left, I feel I lost that too. I want to be strong for you, I want to be that person I was when you were here, but I am drowning in sadness. Someday, I pray I will find those parts of me -- the ones you helped me build -- so that I can carry you on within me forever.

Wednesday, 28 June 2017

June 24, 2017
I woke up this morning
but you were not here

I woke up this morning thinking about cooking pancakes and bacon for breakfast
but you are not here to enjoy

I woke up this morning
with an emptiness I can't fill

I woke up and you did not

I feel you in my heart and while my soul rages with confusion

I long for the day I wake up again with you there

"Goodbye is not forever, goodbye is not the end. It simply means we miss you, until we meet again."



June 26, 2017
Mackenzie said you visited her again. She heard you breathing in her room when she went to bed. I think you are there when I wake up at 3 am. I wish you were here physically when we feel your presence. 

June 27, 2017
Yet another goodbye is near and I feel the lump in my throat again. It has only been a few short weeks since we said goodbye to Xavier's home and a few weeks before we said goodbye to him. I have had to say goodbye to my work and this week we say goodbye to Algonquin School. I loved that school and so did Xavier. So many big changes in so little time has been overwhelming to say the least. 

We are heading into the second month without Xavier and I still cry everyday at least once for him. I miss him so much and long for him with an indescribable yearning. My heart is broken and moving on without him seems so wrong. I feel if life doesn't go anywhere it will still feel a little more like he is here ... I don't have to accept he is gone.  To live again when he can't alongside us brings me feelings of guilt, anger and sadness. He is supposed to be here. He is supposed to finish Grade 2 with his class at Algonquin tomorrow. 

But I know it has been hard for Mackenzie. Her grief is coming out more and going to school every day without her brother has brought up a lot of pain. For a while it could have simply felt like he was just in the hospital, or gone to appointments. But the longer without him in class, in the car on our drives there, the more she realizes he is gone forever. 

I wish so much I could take away her pain. But like all of us, we must feel it to get through it. And she is smart. She told me how the cord of love she shares with Xavier can never be broken. It stretches all the way from here to where he is in Heaven. The love never dies. His death has brought out a side of her I never knew she had. It's truly beautiful and soulful like him. 



June 28, 2017 
I feel so much more guilt now. I feel so bad that I couldn't protect him or save him from this disease. I let him down. I couldn't make him better. I couldn't give him what he wanted most - to be a normal kid- to provide for him as only a mother can and now I have lost my chance to even try. I trust God has given him his wish, as only He had the power to give Xavier that. Albeit his doctors tried and still tell us to this day how heartbroken they are that they could not have given us longer with him. 

How is it fair that we get to live and he doesn't? Why do we have to live in separate worlds now? I know the Bible says he will not miss us like we are missing him, and I pray to God that is true.

I am so thankful for all of the memories we were able to make with Xavier. However, somedays I struggle to remember the details. Sometimes I can only remember the feeling he and I shared in a particular moment. That boy and I shared a special connection in that we didn't need words. We knew exactly what each other was thinking or feeling with only a simple glance. And if Mackenzie is right and that cord still connects us between Heaven and Earth, then I am sending him all my love forever and ever.




Friday, 23 June 2017

Diary of a grieving Mom: Searching

"So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:18 

My grief has now taken residence and settled into every inch of my aching body. Physically I am weak, emotionally I am weak and yet I go about my days as if I am OK. But I am not OK.

Today we closed the door on the home Xavier spent most of his life; the last place he was ever alive. We walked in that door six years ago as a family of four and walked out that door a family of three. It wasn't supposed to be this way. It's not right.

I feel so lost and so empty without you Xavier. I know I will see you again some day but I don't want to live all these days here without you. I have nothing left in me. I want to fix things... take away others pain, give Mackenzie back the twin brother she is supposed to have. But I can't. Everything is out of my control.

This helplessness and hopelessness is growing stronger the more days without my sweet child. As I long for you, I came across this verse above. It made me think of today when we closed that door and reminded me of where we are today. You are eternal, you are living even though I can't see you.

The eyes tell the story


June 20, 2017
There once was a time when my son's cobalt blue eyes sparkled. You could see them light up every time he looked at you. They were big, bright and ever so blue.

This light even shone in pictures of him. You couldn't help but catch a glimpse of his sweet soul in his eyes. These smiling eyes were a testament to the love and joy within him.

There once was a time when my eyes lit up with the light of Xavier's life. They sparkled a most magnificent blue. Whenever I was with him, my eyes told a story of extraordinary love. They glistened in the warm sun, mimicking Xavier's smiling eyes.

Then one day his blue eyes turned a grey. The soft beautiful backlight that made his eyes so full of life had faded. The light of his life went out. When I looked into his eyes, they were empty. Although he still opened them and loving looked into mine, I could tell there was nothing left. No excitement, no smiles, no joy left in those beautiful blue eyes.

After his eyes closed never to open again, my eyes went grey. All of the amazing colour our lives together had painted were washed away by my tears. There was no excitement, no smiles and no joy left in my blue eyes.

I look at my tired eyes in the mirror and see only pain.


June 22, 2017 
I did a little test today to confirm what I experienced the night of Xavier's death was truly a phenomena.

On the night of May 13, there was no storm, no rain, no reason for the power to go out. But it did. It flickered, shutting off the fan blowing on us as well as my computer. But at least 20 minutes later my computer, which I could see clearly from where we had set up Xavier's bed, turned itself back on to display my magazine masthead Inspire.

Today, our power flickered during a heavy rainstorm (which is not unusual). But I had been working on my computer and it shut down. So I waited. I waited for it to come back on like it had that night. If that's what it does normally, than it should do it again. But after an hour of waiting, it did not restart like the night Xavier died.

This further proves my own belief that this had been a sign. That we were not alone in the room when Xavier passed.

It has been said that electricity and spiritual energy are of a very similar vibrational energy. And while I don't believe in ghosts per se, I do believe Jesus or someone sent from God come to lead our loved ones to Paradise. The Holy Spirit was there and took my precious boy home.

June 23, 2017
Thank you Xavier for yet another sign. I needed you, I called for you and you sent me a baby robin again. I love you.




Monday, 12 June 2017

One Month ago I said goodbye

One month
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. 


Monday, 5 June 2017

Living without You: Diary of a grieving Mom (2)

PART 2

Today is your 8th birthday! It is the first birthday Mackenzie will celebrate without her twin brother.
On May 31, 2009, two beautiful babies entered the world. For seven years we celebrated your birthdays together. Today I celebrate with one here and one in Heaven. Today I can only give one of my babies their birthday hugs and kisses. It just doesn't feel right. Half of you is missing.

It hurts beyond words that I can't hug or kiss you and tell you happy birthday. You left too soon and my heart aches for you every day. I would give anything to hold you again. To see your sweet smile and hear your voice even if all you said was poop! 
I love you Xavier. We miss you so much. 
I ask God for strength every night to get through the next day without you. 
The joy you brought to this family is irreplaceable.
At times I feel like I can't go on. I can't live without you and will never get through this. If I could ask God for anything it would be that I could visit you or you could visit me. Why must we be separated until I die. I know you are in my heart but it doesn't replace the you I knew here on earth. 
I am always waiting to see you. Waiting to hear your voice see a sign or feel your touch. 
Things seem so hard to remember right now. I have only silly little memories and feelings of you until Something reminds me of you. Like last nights supper full of your favs ...broccoli carrots and cucumbers! 
Your cute wiggle and head nod when you sang I am sexy and I know it! 
I loved reading with you. You were such a great little reader. Your pigeon books were my fav when you read them to me. 



Eulogy: You were always an angle sent from heaven on the day you were born. An angel who chose us. Sent here to take the name Xavier. You were given the sweetest smile and bluest of eyes that when we looked into them I could see your beautiful old soul. 
I knew you were special. Too special too perfect for this life on earth. There was something different about, a feeling a connection that just can't be explained. I know now it's because you weren't just a boy, you were an angel sent from God to bless our family. You had a purpose and accomplished all you were meant to do to be in that short 7 years. 

You were a boy who knew what you wanted and weren't afraid to say it. I will always remember your love of shoes and how you were my personal fashion consultant. You would tell it to my straight if my outfit looked good or not ... I took direction from you because I knew you knew better. You were not shy to tell me you didn't like my dark hair. Lol 

The things you said were not something a typical 7 would say. I could talk to you on a deeper level deeper than anyone else on this earth. 

We let the arms of a community wrap around you for you to experience so much of the world in such a short time. We didn't let it stop us from showing you off and sharing special time with so many people. You brought some of them to us for strength and support and will forever be our friends. You wanted more than you could have here and it would have been selfish to keep you here. Instead we let you fly the way you could on earth until you couldn't and set you free to heaven where you can do everything you want to do. From babysitters to teachers to doctors and therapists you made a mark on their hearts. It is truly amazing how many hearts you stole in you short life and leaves such and impact a legacy behind. 

I can't believe you are gone. I don't want to believe you are gone. I try not to think of all the things I can't feel or do or hear with you as the pain and heartache is unbearable. To never hear you say I love you or have you take my hand brings me tears I cannot stop. But I have our special memories and feelings in my heart. I remember how you said that's a hustle sweetheart from the bunny in Zootopia. It was the most adorable thing ever and you were so shy to do it but when you did it brought so much joy to us. 

Hope is not lost now that you are gone. Xavier's Hope means so much more than I had initially thought. Hope stretches beyond our physical presence. 
The hope we had when Xavier was still alive has only changed shape as did his body. 
We have hope he is in paradise enjoying everything he wasn't able to do here. We have hope we will see him again. And hope that a cure is found so that no child no family will have to go through what he did. We have hope in renewed relationships with my husband and daughter all because of Xavier. 
I have hope that someday we will feel joy again. 

I feel like I was just getting started to know you to really know you. I still feel there was so much I didn't know. I wanted to be in your head to know what made you scared and how you really thought about your cancer. I will never know what you wanted to be when you grew up, if you would marry Cari. 

June 1: Moving day is tomorrow. Today was hard. I couldn't help but cry at so many things like the rug I remember you lying on crying as you tried so hard to get up off the floor yourself and couldn't. I saw that day how much you were suffering. I laid on that spot today and cried for you Xavier. I ran my hand over the carpet where your tears dropped. 
Then we finally had to unmake your bed... the spot where you lived and died. I held your pillow crying. I wished so much that it was you I was holding. 
Leaving this house ... the last place you were and ever will be rips me apart. 
Your full belly laughs are sealed in these walls, your secrets to your sister locked in the floorboards. 
I refuse to think that it's only the three of us going to our new house. You have to come too. I will hold your hand or carry you like I always did through the front door of the new place even if I can't feel you in my arms. I want you there. It won't be home until I know you are there. 



Monday, 29 May 2017

Living without You: Diary of a grieving Mom

PART 1 (Entries 1-5)

Entry #1:
It's been a week since you left and I still have no words. I have so many thoughts and so many feelings but to find how to eloquently put them down on paper has me curling up in a ball and crying... again.

Entry #2:
I fear for tomorrow as I take Mackenzie to school without you. I have done it before when you weren't well enough to go or had appointments, but this time is so different. I had always come back to you. Now I will come back to an empty house. That emptiness fills my heart too. There is a hole never to be filled again. You took a piece, a chunk of me when you left that day. I am thankful you have us with you, but I don't know how to live without a piece of my heart. I know a piece of you still lives in my heart and I feel you, I feel you around me every day, every minute but it pains me not to be able to see you, feel you or hear you.
I keep asking why, asking so many questions even though I know the answers are all in my heart. I just don't want to believe them.

Entry #3:
Two weeks today I let you go. I remember like it was just moments ago.
I lay next you, holding your hand in mine. Your body was so warm, so hot next to mine. I cuddled you, kissed you and traced my fingers across the curve of your shoulder and over your chest. Your breaths were short and deep. I could hear every breath as you slipped away in your deep sleep.

I lay there awake tears in my eyes, my stomach in knots as I knew these were my last hours with you. As tired as I was, I could not sleep. Every time I was close, my body shook me awake.

Then after midnight, his breathing quieted. The noise was silenced but it took his whole body to breathe. His shoulder pressed forward with each inhale and back as he exhaled. I could feel every breath.

I kept whispering in his ear, telling him how much I loved him. I kissed every one of his fingers and placed my hand on his chest. His heart was beating fast, but strong.

Strange things were happening. The power went out, the fan blowing on us stopped and restarted. The nurse came to check that his oxygen was still running and then left us alone. I felt scared. Not because I knew he was dying, but that there was something or someone else in the room. My body trembled next to him. I laid there trying to be strong and brave for him, but inside the fear was growing. I saw a flash of light outside and thought there must be a storm. Before long my computer turned on and Inspire popped up on screen. It was eerie.

I knew it was soon. I pressed my hand harder on his chest to try to feel his heartbeat. It was slow and faint. He paused between each breath. I held my breath. I moved closer to him. I whispered be free.

I could no longer feel his heartbeat, so I held his hand, gently running my thumb across the top of his limp hand. I leaned over him to see his face. His breaths were now slow and shallow and took little effort on his battered body. At 3:11 a.m. I watched my baby, my sweet little boy take his last breath here on Earth.

I called the nurse as Mark and Mackenzie, who were sleeping on the couch beside the bed, came running over. Our family sat together listening to Xavier's song Somewhere Over the Rainbow. Our last time altogether in body.

These moments are etched in my mind forever. It was so peaceful so perfect as an ending could ever be. As haunting as the memory is, it is the most precious and intimate moments I could have ever had with my son.

Entry #4:
Tonight (May 26) Mackenzie said something so powerful and so simple that I couldn't have said it better myself. She said Mom the puzzle isn't complete. There is a corner piece missing. It's supposed to be four piece, one for you, dad, Xavier and me. That corner piece is missing.

Entry #5: (May 29)
Thank you for the signs. Call it a coincidence, call it nonsense, but I can't help but believe my boy (maybe with God's help!) is sending us signs from Heaven.
Before Xavier died and was still awake and responsive in the ICU, we talked about him going to Heaven. I had him promise to send me signs and he said one of those signs would be a robin.
Of course after he died I looked at every robin as a sign and of course they are everywhere this time of the year. But the real sign didn't come until the timing was perfect.
IT was a horrible night for us all. Just days ago none of could sleep, but only cry. We missed Xavier so much. That night Mark asked Xavier to visit. And I asked to know that he was OK.
The next day sitting on the kid's play set was a baby robin unable to fly. It hopped around the yard, from beside the window, to the bench and into the garden. This morning there he was sitting on the fence in front of the kitchen window.
Seeing this robin brought so much comfort to us in the last couple days. And late this afternoon we watched as it flew away. We had worried about the little guy, but seeing him fly today let us know that he was going to be OK... just like Xavier. This was followed up with a rainbow tonight. I couldn't help but whisper the words of his favourite song ...Somewhere Over the Rainbow ... that's where you'll find me.

Saturday, 20 May 2017

Nearing the end

What do you say when
Your 7 almost 8 year old son says he just wants to be like normal
What do you say when you watch your son try to roll over and get on his knees for 20 mins yelling he wants to do it himself but can't
What do you say when
You little boy cries out I hate myself in frustration
What do you say when he texts you and says I will never be able to do anything again to move like I used to and what do you say when
He says I am sorry mom

What do you say when You can't say it's going to be ok or you are going to get better

You don't say anything at all.
You let the tears run down your face and hold him love him and comfort him as you face the pain of this reality together.

(Written about two weeks before he passed away)

Tuesday, 4 April 2017

When you think you can't take anymore

That was me about three days ago. I was done. 

Over and over again I hear myself telling others how I am hopeful of Xavier's current treatment. I put on that positive attitude, smile and say it's going to be ok, it's just going to take time. I hear the words leave my mouth, but inside I don't believe them. It's a canned phrase now - you know the one people want to hear. 

They don't want to hear me say life really sucks. The days are painful, literally, having to carry around a 70 pound boy and up and down stairs. The nights are even worse when the emotional pain comes pouring out of all the little cracks inside where we tried to tuck it away during the day. All the fears, all the anger, and all the exhaustion. 

Three days ago Xavier said he forgets now what it even feels like to run. My now 7-year-old son who once took kickboxing and could keep up to his sister kicking a soccer ball around, hasn't been able to run since last July. Some days he can barely walk. It's devastating for me and I can't even imagine how he must feel. To have known what it was like to be a carefree kid and then to lose it all. To have experienced your independence and then lose it all. 

It's so easy to get lost in the negative of this situation. The journey has been so long and this time around there has been little reprieve of his symptoms since August. My stamina for this is running out and I need a recharge. We have all lost our shit at least once now; felt like giving up and walking away. 

But then God always has a way of giving you another perspective. That came in 3F cancer clinic. Week after week I see the same families, the same people, the same kids being hooked up for their weekly dose of chemo. But one in particular reminded me of Xavier when our journey just started. 

She is only 18 months old. She has a beautiful smile and big happy blue eyes. She loves to say hi to everyone. This adorable baby is a foster child. Her parents gave her up after her cancer diagnosis. They walked away. Now her foster mom is there every week giving this beautiful little girl a chance at life. 

When I heard her story the other day, my heart sank. How could someone walk away from their sick child like that?  As much as I know the struggles of raising a sick child, I couldn't help but think of all the wonderful, loving experiences this journey has brought us. 

Every hug is special. Every kiss goodnight is precious. We have learned how to love deeper, love stronger and ask for forgiveness. My heart would never have been as full as it is now. I see the beauty in the depth of understanding and breadth of feelings this journey has brought upon us. A blessing in disguise revealed by a random conversation with someone I had seen time and time again but never spoke to until that day I was done.  

God's timing is impeccable! 








Friday, 27 January 2017

Good for us both!

In case you missed it on my other social feeds, I have teamed up with my amazingly talented daughter Mackenzie for this video project.

As a way to give her an outlet and a voice in the chaos of childhood cancer, she has created The Feelings Lab (yes! she was the one to come up with the creative title). This lab is where she will demonstrate ways and tools she has learned to deal with her big feelings and she encourages others to experiment with these things to find what works to help calm their big emotions.

It has been amazing to say the least to see my daughter excel in front of the camera and to  bond over something we truly have talent for together. We are the perfect team. She is great in front of the camera and I enjoy the behind the scenes stuff.

Please take a moment to look at the videos, subscribe to The Feelings Lab and help encourage this sweet girl's dream of making it on TV someday.

Thanks!


The Feelings Lab - Trailer

A Sibling's Story - Episode 1 The Feelings Lab

Christmas on steroids

The hustle and bustle of Chrismastime can make any normal functioning family want to pull their hair out. From getting all the right gifts, the wrapping, the decorations, the baking and preparing the feast, there is no vacation about that.
But these tasks, no matter how time consuming make Christmas Christmas. They stimulate our senses and ignite the Christmas spirit within us.
However, for some, it is simply too much.

Christmas is not a merry time for all. And for some it's not a choice to be the grinch or bah humbug for Christmas. For some, like my son, it is forced upon him by steroids; necessary medication to reduce his symptoms of brain swelling. The drug can also cause horrendous side effects in some people and it plays especially hard on Xavier's emotions.

My 7 year old son is depressed for Chrismas. He doesn't care Santa is coming... in fact he believes Santa shouldn't come because he has been a terrible boy for crying all the time. And like others who suffer from mental illness, there is no on-off switch to make it go away.

No amount of money and no amount of gifts can make me happy. I don't need a fancy house, a flashy car or even a trip or two. All I want for Christmas is to wake up in my own home, in my own bed with my family snuggled in beside me. Unfortunately, way too many families will wake up on a cot beside one of their children in a hospital bed while the rest of their family wakes up at home without them.
I appreciate the importance of being together.