The Book of Me

“Mom, am I going to die?” Pondering this rather difficult question tonight.  It’s something I often get asked about when I talk about pediatric palliative care, and more specifically how I responded to that question from my dying son, or what advice I could offer other parents who may also be confronted with this heart-wrenching question. What do you say when that child IS going to die? I wish I had a perfect answer.  In the almost 8 years my son Xavier lived with terminal brain cancer, I don’t remember him ever asking this. Although he was only a baby when he was diagnosed, he lived a very fragile life in his later years.  There were at least four horrific times when his death was imminent. There were days and months when I can only imagine he felt like death. But did he ever ask me if he was going to die? I can’t remember.  I distinctly remember my daughter asking if her twin brother was going to die, but never him.   Maybe I blocked it out-too painful to...

Anyone can have it.   I go through most days not realizing I suffer until a day like today.  To most it may sound ridiculous, but our dog Charlie was spayed today. Surgery.  Seeing her drugged up then puke was a trigger. My mind immediately went back to Xavier.  The vivid memories of bringing him home after surgeries. He puked … a lot and wouldn’t stop and it only made his head pound more after brain surgery. I see myself holding a wash cloth on his head and a bucket in front of him as I dial 911. I was alone and there was no way I could leave him in the backseat while I drove him to emerg.  He was in so much pain. I was scared so scared but at the time I couldn’t let my emotions out. I never did in the moment. I only acted.  Maybe I wasn’t compassionate enough during those times as I suppressed the pain. But now I feel it.  I am sobbing in the bath tub trying not to think about this experience but it won’t stop playing in my head. I feel my breathing ...

Grief is forever.  Grief is forever.  Grief is forever. You get that yet. I am still trying to accept this myself. Today is the 11th anniversary of Xavier’s tumour diagnosis and I am still crying at the thought of us rushing him to McMaster hospital for emergency brain surgery.  Some years this day and those that follow go by without a thought. Other years like 2021, it is a painful time of remembrance.  I picture my sweet little baby laying on an operating table for 12 hours. His tiny fingers and toes limp with anesthesia under bright surgical lights. That moment I last kissed his soft round head before it was cut apart. The trauma lives within me.  Xavier has been gone almost four years now and over a decade since his diagnosis. But I still grieve. I grieve the day that changed our family’s life forever. I grieve the life he should have lived had he not had cancer and the life my daughter, his twin should have lived.  Maybe it’s PTSD but I can still feel ...

I haven’t stopped loving you A letter to my son in heaven on the third anniversary of his death Photo by Mark Garrett/Creative Works Photography Dear Xavier,  I have noticed you don’t visit me as often anymore and I miss your surprise appearances in my dreams. Your sweet little voice I used to hear in my head is now just a whisper I can only hear when I really try to listen.  But, I haven’t stopped loving you.  Days go by and I don’t long for you like I used to. I set the table for three without a second thought. Your presence at the kitchen table feels like a lifetime ago - almost hard to believe it was even real.  But, I haven’t stopped loving you.   We put away some more of your things and rearranged the room we had made for you. Mackenzie now plays there beside a cabinet full of all of your Star Wars characters. There are fewer pictures of just you around the house and a few more of us as a family.  But, I haven’t stop...

Sibling grief :It's toll on the other children Children are incredibly resilient. My son taught me that during his entire journey with brain cancer and now my daughter is blowing me away with her brilliant insight and maturity in handling the death of her brother Xavier. Two years later and she is not afraid to tell you she is still grieving. In her words, grief -- it's there throughout your life. I couldn't have said it better myself. In this heartfelt video, she honestly shares her intimate feelings about her experience and the big question: Am I normal? https://youtu.be/KTjQSWG38Qg

Xavier, I miss everything about you. Some days have been easier but then there are days and weeks where it’s really hard again. It hits me again like I almost don’t believe it’s real, and I question is this really my life? It's a reality I am not willing to accept yet. I want you in my life ...physically. I want to see my twins grow up together and not wonder at each milestone what you would have looked like or wanted or achieved... the list goes on. I hate pretending and I hate that people don’t understand. They don’t see how I miss you from the moment I wake up to the moment I fall asleep. Even though we have new routines now I still remember and yearn for our old ways. When I had two kids to get ready for school. When I had two kids to put to bed. Two lunches and two birthday presents. Until I don't and I go a day where I was so busy that I didn't think about you. And then the guilt... the fear that I may actually forget you in our day to day life. I try to be po...

What a bummer... I didn't think I would live this long without you, but I did. Soon it will be the second anniversary of Xavier's death and what should be his 10th birthday. As we approach this emotional milestone, I feel different. The first year was shock, intense acute grief, guilt, excruciating heartache, disbelief, anger and days where I wanted to eat junk and hide under the blankets with my boxes of Kleenex for as long as I could. That first year and much of the second were really all about survival. To be honest, I really didn't care whether I lived or died. And my actions reflected this sentiment. I stopped taking care of myself. I stopped eating properly, I became sedentary and stopped caring that my blood sugars and blood pressure were on a constant roller coaster. Managing the barrage of emotions wasn't even a consideration; I was grieving. I was trying to survive on a raindrop's worth of life energy. And just getting out of bed everyday to pretend I ...

I am fighting with time again.  The more time that passes since Xavier's death, the further away I feel from him and the more pain I feel. "They" say it gets easier with time, but I call bullshit. No one who has lost a child says that. It changes, yes, but it never gets easy.  In the beginning I felt so much closer to him, to his spirit. Now I feel this gap widening. I hate it. It makes me cry, it makes me sob and cry aloud for him. It’s yet another step forward into this new life. And change is hard... I resist it with every tear that falls. I am growing and so is he in Heaven. We are both becoming stronger and transforming into better beings from our experiences. We are learning. But it hurts.  Time makes no difference. As much as I try to stay positive, hopeful and prepared, my body remembers the trauma. It’s emotional and physical. The subconscious feelings of the last months of Xavier’s life are bubbling up again. Even though I wasn't consciously thinking a...

You don’t realize how comfortable you are in your new life until something so concrete reminds of the life — of the living child you used to have. It may sound strange, but as we approach the two-year anniversary of Xavier's passing, I remember him not being here more than I remember his life before we lost him to brain cancer. Or at least lately I have subconsciously chosen to move forward with life and this newly forged relationship -- or continuing bond -- with my dead child. Sometimes its less painful to think of him as he is now, than to remember what it was like with him alive. Those memories remind me of what I am missing. They sting! Xavier's drawing from 2015 after his first relapse. I believe he knew then he was going to die. So many hidden messages in this picture from him rising up to the tiny rainbow.  As I recently sorted through some files I came across his report cards, his drawings and all of his medical documents. They stopped me in my tracks. He d...

Top three things I learned on our first vacation since our child's death: 1. Grief doesn't take a vacation!  2. Your loved is with you no matter how far you travel. 3. It's OK to be sad -- even in paradise. Last week our family went on vacation. We sailed away on a massive cruise ship to visit Puerto Rico, Dominican, Bahamas and St. Thomas. For seven days I was away from reality. I was away from all the photographs of our past family vacations with Xavier. I was away from his urn boldly displayed in our living room. I was away from his room filled with his toys, his costumes and his bed where I cuddled up next to him and kissed him one last time before he stopped breathing.  For one week, I was away from the daily reminders of the trauma our family has endured - and the emptiness of a home where only one of my children now lives.  While I basked in the sunshine as we sailed thousands of miles across the ocean blue escaping from the everyday...

This year I am really trying to put the Merry back in Christmas. I fought through the tears to decorate the house. I found the energy to bring back the Elf on the Shelf and I attempted to decorate the Christmas tree this year.  I even went shopping for gifts on several occasions. I did none of these things last year. But still, I struggle. The countdown on our chalkboard says three days till Christmas, but it still feels like any other day. I still cry, I still hurt and I still yearn for the days when we spent Christmas altogether. The Christmases where my son could lick the spoon from my Christmas baking and hang up his own ornaments and unwrap his gifts. The mornings where Mackenzie and Xavier would race out of bed to find Ginger, yelling at each other not to find him before the other. I tell myself every day to be thankful for what I have. But still, I struggle. There were months where I could fall asleep easily and slept through the night. But for whatever reason, my ...

Dear Friend,   First and foremost, thank you for being my friend. I am incredibly lucky to have such an amazing group of people who are of no relation to me who care so deeply about my wellbeing, not because it’s expected of them, but because you choose to love me.  And it is out of that deep mutual respect we have for one another that I am reaching out with a letter to say, I am sorry. I am sorry I have been a shitty friend. I am sorry I haven’t been there for you like you have been for me when Xavier died. I am sorry I don’t call, I don’t text and I don’t visit.  And as much as I would like to say I will do better now, I can’t make any promises. Please forgive me for my honesty. But because you are my friend, I know you understand I am just being genuine and giving you my no-bullshit, just-the-truth explanation.  I am grieving. Yup, I said it and even as I write it, it too sounds like a lame excuse for my less-than-perfect behaviour. Now almost...

Your stuff can wait Perhaps it's my bah humbug attitude of the holidays I have acquired since Xavier's death, but I have some serious concerns about the back-to-work legislation expected to be imposed on our postal workers this week. To be clear, I have no friends or family (that I am aware of) in the postal industry and nor do I pretend to know all the facts of this issue. However, the argument looking in from the outside is quite simple: The quality of people's lives versus the commercialism of Christmas. It is a classic battle between people and stuff. Postal workers say they are fighting for better working conditions, for work-life balance so they can spend more time living not working. The government wants to force them back to work to ensure gifts and cards get delivered in time for Christmas. Because it is a huge inconvenience for Canadians not to receive these things. " The issue has quickly become tense for many Canadians because Canada Post is cruc...

Series:  Where language and emotion collide re·al 1 /ˈrē(ə)l/ adjective 1. actually existing as a thing or occurring in fact; not imagined or supposed. "Julius Caesar was a real person" synonyms: actual , nonfictional,  factual , real-life;  More 2. (of a substance or thing) not imitation or artificial; genuine. "the earring was presumably real gold" synonyms: genuine ,  authentic ,  bona fide ;  More Stop using real for everything!  This is my rant for the day. I love our language, but like an overplayed song on the radio, words lose their effectiveness. I used to love [blank] song, but now I hate it because I have heard it way too much. Is this something you may have said before? Overuse destroys words in the same way. It diminishes its meaning and tangles its purpose.  It seems everything today must be coined "real" som...

  I am trying hard not to be sad. I am trying hard to see the positive. In fact I remind myself all the time of everything I am thankful for and blessed to have. But I am still sad. I actually feel proud because I get out of bed everyday. Some days I would rather not but I do it anyways. But I am starting to get angry. I can feel it bubbling up inside me. Every time I can’t pull that smile together or I do and it’s so disgustingly fake it makes me want to puke, I get more upset. I want to be happy, I want to enjoy Christmas again and I want to make sure Mackenzie has the best Christmas season too. But as much as I want it, and yes   I know the saying if you want something bad enough you can make it happen, but I am failing. I guess maybe I don’t want it as much as I think. I am happy to be sad yet I feel the pressure to pretend. And when I can’t hold back the tears, I get angry. This dark cloak gets draped over me and it’s too heavy to just shrug off. There a...

I rode the roller coast for years and now it's a maze.  Finding my way after losing Xavier has been a series of dead ends, wrong turns and the occasional straight path to nowhere. I must be doing grief wrong. "They" say not to make any big life changing decisions within a year after losing a loved one. I have made several.  First, we moved a month after his death. Had we known (or accepted) he was palliative, we never would have sold so quickly. I also quit my new job during that first month, knowing I would not be returning for some time and ineligible for any extended leaves of absence. Then here we are just over a year later and the cycle continues. We moved -- back to where we came from -- and I quit my new job at Brain Tumour Foundation of Canada.  There are so many amazing people behind this cause working hard every day in their labs, at the foundation, in hospitals and government offices trying to improve treatments and maybe find a cure someday. Don’t get m...

This is how I want to remember you... us! Happy, silly, in costume, playing with your sister and me being your Mom.  The fog has returned My focus and clarity gone Grief has settled in again I am tired; my body slumps and is too heavy to carry. I want to sleep. We are now in the last days before Xavier died. He was alive this day last year. But on May 13 there is no living memory of him last year, aside from a couple hours of unconscious sleep before he took his last breath beside me. I held my breath with him waiting for the next and it didn’t come. We had a great few days this week last year and he was full of laughs, full of life! We saw a glimpse of this again in ICU. Then he deteriorated.  The zipper that keeps us all inside Earth started to split. His connection to this plane was ripping apart. When the zipper fully detached he was opened to eternity. This week has been challenging, constantly fighting back memories of this time last year. Painf...