Childhood cancer came completely uninvited into our home but he did come bearing some remarkable gifts. The one year anniversary of our daughter’s cancer diagnosis is fast approaching and you know what? We’re not giving cancer his anniversary. He is an extraordinarily unwelcome house guest and he doesn’t deserve the day. We celebrate, we are saddened and we live in the moments as they happen, cancer doesn’t deserve his day and we refuse to give it to him. I will however give him this reluctant letter of thanks.
In my 20s a friend and I used to debate the Chinese proverb “May you live in interesting times”. We debated – Is it a curse or is it a blessing? I can now tell my 20 something self what we didn’t consider back then. It is both a curse AND a blessing for my family are indeed living in interesting times and it is horrific and it is beautiful.
The horrific part of the story is a story well told. If you’ve been around the internet you’re all over the cursing part of childhood cancer. It tells of living a reality of your child’s possible death, of signing off on drugs that are known causes of heart disease, kidney failure, liver disease and (I see the irony) cancer. It’s a story of knowing the death of more than one child, of chemo toxicity, of being in hospital for weeks and seeing friends in hospital for months on end.
The lesser told story is the beautiful part. Our daughter’s diagnosis has opened up our world to incredible beauty. Relationships of deep understanding and compassion, a personal capacity to see what is truly important and a profound understanding and appreciation of pain.
I used to think that the sun rose and set with happiness. I worked hard to be happy and keep my family happy. Now, I realise every emotion is equal and deserves the same rights, respect and welcome I give happiness. This has softened me and made me feel less brittle in a crisis and less likely to lose my sh*t when my kids can’t find their school shoes and other small fry.
This beautiful cancer introduced us to a Lara that we may never have met otherwise. At 6 (undergoing a high dose steroid pulse) Lara described depression to me “Mummy, happiness lives inside of me. Then the darkness comes. I sit in the dark and then it goes away and I am happy again”. At 6 she was telling us how to support her depression – just sit with her in her darkness and keep her company until it passes. This gifted us an insight into pain of all kinds. It isn’t my job to solve someone’s sadness, it’s not in my capacity but I can make a difference simply by sitting with them and sharing their moment.
Cancer has gifted our daughter a rare and insightful bravery. At 7 Lara talks about the fear of pain being worse than actual pain itself and tells me that she’s going to go into a procedure NOT thinking about possible pain but waiting to see if it will hurt, this time. Lara can quietly go limp and ‘melt into the bed’ to facilitate a painful procedure. While we are incredibly proud that she is able to marshal her emotions in this way I want to rage at the world that she had to learn how. We are living in interesting times.
In the shadow of his sister’s cancer diagnosis our son has developed a fierce independence and one of the strongest backbones. He knows himself well and works to make choices that are right for him. Every time we announce ‘plot twist’ when our plans are scuppered by a hospital admission he jumps on board with a quickly packed bag and a ‘who am I staying with?’ Finding fun in the uniqueness of sleep overs and McDonalds drive through dinners and staying with one parent while the other stays in hospital with Lara. He understands his sister’s treatment protocols and works to help her minimise their side effects. His empathy and his kindness and his independence at 9 years old is a blessing from childhood cancer but they have been hard won.
I feel the love people have for us in my very bones. I have often been alone in a room with my sick child (or at home with my well child while my husband is alone is a room with our sick child) but I have rarely felt truly alone. I have developed a trust in others that they will care for us and look out for us even when they’re not in the room. It takes incredible bravery for a friend to support the parents of a child with cancer – our friends who stepped up and the new friends we have made are gifted to us by childhood cancer and they give me a feeling of being deeply understood and cared for.
Our diagnosis story itself isn’t that different to anybody else’s. Lara found an unexplained swollen lymph node in her groin and on the Thursday we ran bloods and scans. Two days later on a sunny Saturday we got a phone call ‘Your daughter has something that looks a lot like leukaemia’. I held it together long enough to get all the facts, hung up and dramatically fell to the ground (very midday movie). My husband, Dave, knew the news without asking. I wouldn’t have predicted it but I was the one who pulled it together and drove us to hospital. Dave told me later he was writing Lara’s obituary in his mind. I’d like to say that the next bit is a blur but it never will be for me. I can still feel every moment of the last 12 months - that will be my curse.
Our blessing is the living of a very honest life, having meaningful and truthful relationships, the opening of our eyes to genuine compassion and pain. Our brave and insightful daughter, her extraordinary brother, the closeness I feel with Dave having nursed each other’s pain are paid for in curse. I’d throw the blessing back with its curse in less time than it takes for my bruised heart to beat. Given a choice I would willingly lead a predictable, uninteresting vanilla kind of life where my family are safe.
Life doesn’t give us a lot of real choices though so what my family do choose is to see the blessing in our curse, they choose that every day and I do love them fiercely for that. So we won’t give cancer his anniversary in our life, there’ll be no more than this letter. We write our life’s story every day, we won’t let cancer or his anniversary write it for us.