Rainbows & Smiles (085-832-NPO)

How to be present while your child is going through treatment

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Bonni, who has dedicated her life to Rainbows and Smiles has recently written an article for Oncology Buddies where she advises on managing fatigue, stress and concern so you can still be present as a parent while your child is undergoing treatment.

When I was presented with this topic, I thought how I could even begin to advise on a subject that I failed so dismally at. The only person I gave attention to, was my terminally sick child.My only son, Jed, was diagnosed with an anaplastic astrocytoma (a fancy name for a deadly brain tumour) when he was almost four. Jed battled cancer for three years before he succumbed to his disease at the age of six. During those heart-breaking, tortuous years, he was (naturally) my only focus. There is no right or wrong way to navigate childhood cancer, it’s a journey that no one can prepare for. As an ultra-marathon athlete, I train four times a week to complete an event within cut-off time. As an oncology parent, you start the race with no preparation and training. The gun goes off, with a loud bang, when you are given the diagnosis, and you start sprinting. Pushing and shoving your way through treatment protocols, needle jabs and surgeries all while watching your child suffer.

No matter how exhausted you feel, the race isn’t over until you cross that finish line. As a parent, you want the banner to read remission but for some of us, it unfortunately reads, your child has died. An ultra-marathon race gives little respite, you can walk the hills, pull motivation from the crowds, do your best to stay hydrated, all while moving in the direction of the end goal. A race is run alone and often the childhood cancer journey is lonely, it offers no relief. You have no choice but to keep moving forward, navigating the challenging times and sometimes you push the people you love away.

Suggested tips

If there was a training manual for how to be present, manage fatigue and stress while your child is going through treatment, my suggested plan would be this.

Communication: 

Verbalise your fears, emotions, and anxieties. I did this via a blog. I found speaking and saying the cancer words out loud, made them too real. Please share your feelings with your partner (mine read the blog) and ask them to do the same; take a moment to recognise the barriers of communication and take intentional steps to address them.

Quality time with your partner and loved ones: 

Boy oh boy, did I fail at this one! Even during the most difficult circumstances, carve out quality time with your partner and other family members. Take a walk in nature or sit quietly together without distraction. Trust me on the quality time!

Gather your tribe: 

Lean on your support network, they are desperate to help but often have no idea what you need. Tell them and be direct: Please can someone take our dog for a walk today. Start a broadcast WhatsApp group so that you don’t have to repeat yourself. Make yourself the only admin so that you don’t waste precious time reading how are you a thousand times. People care, but their care can become annoying; manage it from the start.

Seek professional help: 

I did this too late, amid anticipatory grief, I somehow was treading the waters of denial. My emotions impaired my ability to regulate the intensity of how I was feeling. I often had impulsive reactions, outbursts, and emotional shutdowns. Perhaps, I was on a path to better understand the difficult parents that come my way now as a paediatric palliative care specialist. Guidance and coping strategies can be tailored to your family’s needs. Therapy can help you deal with the anticipatory grief; a therapist can validate your feelings and prepare you for the gut-wrenchingly death of your child, if that is to be.

Self-care: 

It’s paramount that in the midst of the chaos you take care of yourself physically, mentally and emotionally. Make time to find joy in the smallest activities. During my journey with Jed, my happiness came from food. Bless my cotton socks, my emotions were starving, and I landed up eating my way to a voluptuous curvy, plus-sized middle-aged lady. Try not to eat those hungry thoughts, rather prioritise yourself; a walk-in nature, an afternoon nap, a craft class. It’s not selfish, rather, it’s essential for your own well-being and ability to support your child.

Create memories: 

Take photos and make videos (trust me Jed was photographed as much as Lady Di in her prime, and there is still not enough footage of my boy). Do arts and crafts; my walls are adorned with six-year-old art master pieces. Do fun engaging activities that bring you and your family joy. Make handprints, cut a lock of hair, make a memory treasure box together. I visit my memory box often and it brings me comfort during my grief.

Be present: 

This is the one piece of advice that I always give to parents. Please be present in every moment with your dying child and with your family. Try not to dwell on tomorrow and rather focus on the very moment you’re in. Have meaningful conversations, have difficult conversations, and remember to laugh. My present moments with Jed have given me the precious gift of memories and it strengthened our parent/child relationship. To this day, I cherish Jed’s final moments. Being present is a profound expression of love, compassion, and courage. Do this with your partner and family members too. Live in the moment completely.