Skip to main content

Posts

Pondering death

“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 process or maybe he just nev
Post a Comment
Read more
Recent posts

Sometimes I am not OK

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 get heavier and the emotions I sho
Post a Comment
Read more

There’s no damn timeline

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 the pain and the fear of this
Post a Comment
Read more

I haven't stopped loving you

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 stopped loving you.  This pas
1 comment
Read more

"Am I normal?"

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
Post a Comment
Read more

I miss you...

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
Post a Comment
Read more

When it's been two years since your child died and you are still alive

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
Post a Comment
Read more