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)


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.


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.