For every adult in the kitchen there appeared to be two or three children running between rooms, blitzed on sugar from the chocolate fountain and marshmallows they were using for dipping. Wrinkled party dresses and cheeks smeared with sweetness, they were enjoying the freedom granted by their parents’ own distraction – mainly champagne and a recently restored vintage jukebox. A head collided with the stem of my glass and kept moving, unfazed, back to his friends all up way past their bedtimes.
'Cardiomyopathy is a chronic and sometimes progressive disease in which the heart muscle (myocardium) is abnormally enlarged, thickened and/or stiffened. The condition typically begins in the walls of the heart's lower chambers (ventricles), and in more severe cases also affects the walls of the upper chambers (atria). The actual muscle cells as well as the surrounding tissues of the heart become damaged. Eventually, the weakened heart loses the ability to pump blood effectively and heart failure or irregular heartbeats (arrhythmias or dysrhythmia) may occur.'
One of the younger boys came in, crying over some rough play happening in the next room. He’d been wearing a toque the whole time and now pulled it off as he found his mother. He was soothed with some kisses to his cheeks and bald head before running back to the action.
“Yes he’s bald. He’s got leukaemia, he’s been in remission since March. We’ve got two more years of treatment.”
She went on to tells us about how she worries for his future; as a teen and adult will he lead an incredibly healthy lifestyle, or will he feel invincible having beaten cancer, and abuse his perceived strength?
The hostess, the wife of a friend, went on at length about how scary it must be – the thought of losing a child. How utterly terrible it would be to lose an only child.
It was right around the time the walls began to close in on me.
'Cardiomyopathy is nondiscriminatory in that it can affect any adult or child at any stage of their life. It is not gender, geographic, race or age specific. It is a particularly rare disease when diagnosed in infants and young children.'
He found me on the front porch, trying to regain control of myself, tears streaming down my face. I was as embarrassed as I was upset and wanted to scream when he asked me what was wrong. I stared through the picture window at the enormous twinkling tree he and their two kids had decorated that morning. I forced some deep breaths and pulled out my mobile to call a taxi.
We finally received Sadie’s post mortem report a few weeks ago. Any hope I had been holding on to that it would reveal some extraordinary insight about her condition was dashed. Waiting had given me a reason to tuck that part away; I could put off thinking about future children because I didn’t yet have all of the information I needed. There had to be something else, some tiny scrap of information resembling an explanation for it all. Going through the document with her doctor made me face what I have been refusing to believe since he told me so on the day I met him. We would likely never find out the cause.
With nothing left to wait for I know I should be thinking about what I expect from the future. Our genetic counsellor told us that based on what information they do have, the odds of us having another child with cardiomyopathy are 1 in 10. She chose to pitch it as a 90% chance that any future children will be perfectly healthy.
My husband asked me afterward whether I’d buy a lottery ticket given those odds. My answer was simple. Of course I would. Because I know I would survive losing.
We’ve all become much too aware of the fragility of life, regardless of what took our children from this world. I would like to hear how other babylost mamas who went on to have more children came to the decision to try again. How long did it take for hope to outweigh your fear?