An article by Diane Flacks in today's Toronto Star, Giving up not an option, so laugh, sharing her and Janis's journey with Jonathan at SickKids, reminds us that coping with children's extreme medical challenges requires not only back bone but a well developed funny bone.
"To keep going, I was held aloft by three pillars: the love and support of family and community, an inappropriate sense of humour, and those fabulous bitter blue sleeping pills. Sure, there were times when I was filled with the raging desire to throw Jonathan's IV pole through his window...The roller coaster of euphoria and despair at Sick Kids, the fragility of the art of medicine and the absolutely random suffering of children can make you lose your noodle. The thing that often saved me was laughter. Not "polly-polly bright side" – that annoying state of optimistic denial, ignoring that our child was in pain and in critical condition – but discovering the absurd in the midst of the crisis."
Laughter as tonic for fear. Laughter as love. Laughter as a cry for help. Laughter as professional respect and inclusion. Laughter as necessary distraction. Laughter as a beautifully human way to keep death at bay. The corridors, private rooms, washrooms, meeting rooms, education rooms are filled with laughter of all kinds. Diane's piece reconnected me to those extreme emotions we felt while in care: utter disbelief, gnawing fear, blooming hope, raging anger, deep grief, transcendant appreciation. That awful anxiety of having a sick kid comes with potential for a deep reconnection to life and death and the ability to laugh and cry within moments moves even jaded, bunkered, blackberried out male souls into the warmth of that absurd realm Diane transports us to.
Jokes that later made me cringe helped lift a heavy weight. We bonded with Sasha's cardiologist because we respected her knowledge and effort and communication style (focused listening, priority summarising - great for brains in info overload). She also smiled when we made inane comments that could seem certifiable to some, certainly a sign of complete lack of fitness to parent, let alone parent a sick kid. Awkward, irritated, truthful, suggestive jokes were just part of the banter.
No surprise they are mostly stricken from memory, just leaving damp warm imprints. The safe jokes about the environment, leading jokes about when something or someone would appear, revealing jokes about matters we have mutually agreed to leave unsaid, for now. Humour was coping and strategy and a common form of subtle or not so subtle communication with core teams. Humour was the last refuge for a gripe when we had differences of opinion. TPA man. Between a rock and a hard place. I am going to lose my mind. You can do that but I might have to jump over this bed and throttle you.
When Sasha was doing well, at clinic discussions, we often explored what Sasha could do. What are the limits to experience when you have a cardiac shunt? We often dreamed of taking her to a gorgeous beach. Our cardiologist was expansive in supporting Sasha's home life however she pointed out there was a lot of risk to air travel. As we saw it, "So we can take her on an aeroplane to a beautiful beach but that might kill her." Smile. Ok, no flight this year. Sasha never flew on an aeroplane, that we know of.
Parents joke about everything however jokes by doctors and nurses are a different matter. Often treasured. Sometimes disliked intensely. Humour is endemic at the hospital and I imagine in most functional hospitals as the presence of death can create a different oxygen. Humour reveals deep understandings between families and care givers, it grows over time, or in rare cases you click and it happens faster, as care giver and family learn each other's styles.
Yet there is always a danger of inappropriate frivolity and the cage closes: you need to know us and we need to like you. We had one doctor joke with us about risks Sasha faced during a proceedure - it wasnt the first wierd incident, nor were we the only one's ticked off, so it was the final delivery and we requested him off our care team. Goodbye, funny guy. That kind of humor made us inhumanly serious.
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