‘Careful’ said mum, as the little blue boat rocked in my pudgy fingers. Great paddle of her hand scooped it up; beached it back on the shelf and left me adrift in a sea of sentiment.
To me it was a toy.
To mum it was a reminder of her brother.
To my uncle a desire for the freedom and life he could never have.
On a good day he imaged floating on a lake, breathless at the beauty of nature.
“I know how I should climb into a canoe”, he told his sister
“I need to have 3 points of contact – my hands on either side while I step in, making sure my foot touches the centre line.”
“I’ll stabilise it for you”, she’d offered
“If only I didn’t have this wretched tangle of limbs,” he slouched in a pool of disappointment.
And then in another conversation he would ask: “What’s dying like?”
“You’ll drift peacefully to heaven, like being in a canoe,” was always her response.
He drowned before I was born, chest muscles so weak they could no longer expel the secretions accumulating in his lungs.
There’s no cure for Duchenne Muscular Dystrophy. Over time muscles contract and contort in inexplicable ways as the proteins of the fibres break down. At aged seven he began to stumble. By his teenage years he was confined to a wheelchair. Then his arms and shoulders became heavy; and progressively his diaphragm and intercostal muscles lost the ability to synchronise his breathing.
Ribs that were supposed to protect his heart and lungs, became a coffin as at twenty-one years he coughed and gasped and struggled into the ‘other world’. His emaciated body sank beneath the ground under the weight of family grief and a measure of guilt from my Mum who had resented the attention her brother had required from their parents.*
Mum was left holding 3 inches of memory: his little blue boat (and the legacy of a faulty gene).
Duchenne muscular dystrophy is inherited in an X-linked recessive pattern. A female who carries one X-linked gene alteration has a 50% chance of having a son with the condition and a 50% chance of having a daughter who is also a carrier.
As I grew older I wondered if the little blue boat was a foreboding of things to come. The heaviness of Mum’s loss caught in my ribcage. The consequence of DNA weighed on my mind. I watched my sons growing up, alert for any indication of weakness. They ran … and didn’t stop running and the weight eased off my chest.
Mum has outlasted her brother by six decades. Her breathing has deteriorated and the doctors cannot find a cause. I wonder if there is any connection with Muscular Dystrophy but research is scant and there is still so much that is not understood. Google does not have the answers to everything.
I helped her unpack her belongings at the rest home.
“Where’s the boat?” she gasped as I held my breath then sighed with relief when it was found in an ocean of tissue paper.
In my memory the little blue boat was bright, smooth, unblemished but when I cradled it in my hands I noticed the faded colour, cracks in the glaze and chips along the edge. Fingers that matched retrieved it from me and placed it on a new shelf.
There it stays – grounded, watching over my Mum …
… waiting for her last breaths.
Past and future collide now. What will I do with the boat once Mum has gone? Will I sink under all the weight it represents? And, if I decide to keep it, should I continue to revere it, mooring it on my own bookshelf?
My two year old grand-daughter loves to line up her cars, by colour or by size. She doesn’t understand yet but she is learning about similarities and sequencing. I’m going to let her have the little blue boat – unmoored from a shelf; flotsam and jetsam in her toy box. Perhaps if she places it amongst the line of cars she’ll also learn about anomalies and other details that may in time help her study and figure out the missing links to a deeper understanding of Muscular Dystrophy. After all the future is in the hands of our youngsters.
*“Siblings may feel neglected because much of the parents’ emotional energy is directed toward the child with the disability, leaving little emotional energy for the other children in the family,” Dr Milevsky.