Living with fear during uncertain times
As a parent of a child with cancer, I lived in fear every day. I also learned a lot about coping with chronic stress and the unknown. And now, as a bereaved mom, I am here to tell you there is hope in this battle with COVID-19.
My son Xavier was diagnosed at eight months old with an incurable brain cancer. Our family was immediately plucked out of our regular life and into this new world within the walls of McMaster Children’s Hospital. We spent months there with much of our early time in isolation while Xavier received treatment, including surgery, chemo and radiation. The weeks in isolation in a small hospital room were long and difficult, but necessary when he had no immune system to fight off infections.
We lived every day knowing our son’s cancer was incurable and he would likely die within five years. His tumour was called the sleeping dragon, because it could go away for a long time and you never knew when it might wake up.
This fear of never knowing when his cancer would come back was debilitating. We had to find ways to cope with this unnerving reality. You may have similar feelings of fear and anxiety now as this coronavirus creeps into our communities, turning our lives upside down for who knows how long.
Adapting to rapidly changing situations became our normal and sometimes required life and death decisions. I want to share some of the things that helped me navigate those challenging times and hope you too can find some peace in the current chaos.
Trusting in a “bigger plan” was not something that helped me through, but trusting that God would give me the strength to endure whatever was ahead did. I clung to this thought during many dark moments. And He will give you the strength to get through this too.
Remember a challenging time you have overcome before – there must be something, as life is full of ups and down and use that to trust that you will be ok now too.
Part of my trust was built from past experience. Each time we faced another obstacle or another hospital stay and even in my grief now I learned it does go away, it does get better. In the early days, I actually kept a tally of each time I survived another breakdown, another painful memory or moment where I just didn’t think I could carry on. I could look at that and remember how many times before that I pulled through.
This too shall pass. We will be able to go out and enjoy life again with our friends and family.
When fear has you in its grip, we often act irrationally – like stocking up on toilet paper. But we do this because it is something we can control.
I like control. I want to be in control (I can hear my husband laughing) but I had to learn very quickly to let go of what I couldn’t control and focus on what I could. I couldn’t control my son’s cancer – neither could his doctors – but I could comfort him every step of the way. I couldn’t stop my son from dying, but I could love him to the very end. So, you see there is always a choice – we have free will to decide what we want to focus on. We can choose to focus on things we can’t control – like when this virus will go away – or on how we can protect ourselves and others by staying indoors.
Lastly, look to the other side. Look to those who have already come through the worst and are thriving or surviving. Having friends who had gone through what we were going through was so important. They were ahead of us on this journey and gave us hope for the future. They were ok despite the worst happening. Their child had died, and they were still living.
I encourage you to seek out those stories in the sea of media – to those who are over the peak of this pandemic and surviving. Heed their warnings, but also recognize the hope in their messages.
A few more tips:
1. Show Up. Get out of bed and set out to do one simple thing each day. When you accomplish something – even if it is just getting dressed that day – you usually feel better. For me, I just had to remember all that my son had to show up for, painful procedures, tube insertions, needles etc.
2. Pair down your fear and anxiety by looking at just one problem at a time.
We often get overwhelmed when we try to solve every future problem right now in that moment.
3. BREATHE! Simple as that… just breathe.
4. Focus on kindness. As much as our tendency might be to be upset and angry when we are stressed, being nice to others can instantly elevate your mood. It always felt better to do something nice for our healthcare providers, even if was just saying thank you.