Skip to main content

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 never did ask. I hate to think that he was too scared of the answer to ask. More likely was the fact he just didn’t care to know. He went on living life with the innocence of a child - something an adult would find challenging.


When he was well, we made a point of talking about death - and using that specific term - and shared our family’s thoughts and beliefs about where we go after we die. Throughout his journey we were always honest about his medical condition and with every treatment, we shared our fears and hopes together. Depending on his age, we explained this differently, but always honestly. 


I think by having these genuine yet informal conversations (I remember one in the car at Sobeys when my husband was grabbing some snacks and we just started chatting about Heaven), it meant they were’t so scary or taboo when shit hit the fan. 


We also had time on our side. Xavier grew up with cancer, in hospitals and in treatment so he saw things and had a pretty good understanding of life and death. We met other kids at clinic who never came back and had friends with children who had died. 


By the time he was actively dying, he already knew. When they say kids know more than you think they do, it’s true. He knew before we knew he was dying. 


While it took him a while to come out and say it, he showed it in his actions, his emotions and in his conviction that he wanted no more surgery. 


Then one day he came right out and said, “Mom, I am not going to get better.” 


At that point he was tired. Tired of struggling to eat, struggling to walk and talk and just tired of having no independence. He was waiting for me to let him know it was OK to let go. 


I did and he died two weeks later. 


But, had he asked if he was going to die, I would have told the truth. Just like I had whenever there was a new procedure or therapy. 


“Yes sweetie, there is a very real possibility you could die.


Other kids have died from this, and other kids have survived. All we know for sure is that you will never be alone and we will always love you. 


That still holds true today, now almost 6 years after his death. He will always have a piece of us with him. We love you Xavier 💚






Comments

Popular posts from this blog

The dragon in his head

As far as my son knows, there was a dragon in his head. This dragon was big and scary and made him feel sick. But as far as my son knows, we stomped that dragon out. The idea of Xavier's cancerous tumour being a dragon in his head came from a movie that had been given to me by another mom of childhood cancer. Paul and The Dragon is a powerful 20-minute video of a young boy with cancer. Although it is generic (not about brain tumours), and there are no words, it is incredibly telling. For any family who has been through a similar experience, you will instantly connect with this boy and his family. And for my kids, who are very young and don't exactly understand medical terminology, the story is easy to understand and has provided a great foundation for how to talk to them about Xavier's journey with cancer. The movie was so popular among my kids that it became part of our regular Friday night movie rotation. My son even requested it while he was in the hos...

Kids need to be kids - even with cancer

No one wants to see their child hurt. But when you have a child with a serious medical condition, seeing your child in pain can often be a frequent occurrence. Physical pain is one thing - emotional suffering is another- one I had little experience with until recently. (Yes, I am struggling, so that's why I am writing!) When Xavier was initially diagnosed and treated for brain cancer, he was a baby. He couldn't talk, express his feelings or even remember the trauma he suffered. Now, he is older, smarter and more thoughtful - yet too young to understand. About a month ago we started to see a change in Xavier. He was different. His sleep patterns changed, he was lethargic and other symptoms arose that concerned us. An MRI was immediately scheduled, followed by appointments with multiple doctors. A lumbar puncture has now been scheduled. I am not concerned they will find more cancer. I am not worried there is anything physically wrong. What has me scared and heart broken i...

Open wounds

I respect everyone who wants to help our family and offer some advice on how to help in our current situation, but I am frustrated because most people just don't understand the complexity of the issues. I am so tired of hearing, in some form of another, just make them suck it up! My children are behaving normally for a 3-4 year old. They are 6. Their behaviour is associated with many internal hurts, trauma from our experience of having a child with cancer. Yes, someday things will have to be different. But just a few short months ago our lives were turned upside down again. Look at it this way... if your child got hit my a car and had a gushing open wound to the head or leg, would you just tell them to suck it up?? Of course not. You would need to seek medical treatment ASAP and have them treat the wound so it can heal properly followed by proper physio therapy. Well my kids have a big open wounds in their hearts right now. If we leave it and just make them suck it up th...