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 💚