It’s New Years Eve, the kids are asleep (finally), Hubbster and a few neighbours are drinking in the shed and a friend and I are well on our way to drunk-town.
We have only been friends for a few short months, but straight away we just clicked. It’s that unexplainable feeling of just ‘getting’ one another, knowing that without even explaining who you are, they just know.
We met, as many mothers do, through the friendship of our children. Foghorn and her son L1 are inseperable…and full of the joy that is boyish mischief when they are together…so much so that due to their often heard conspiratorial giggles we have dubbed them Beavis and Butthead.
Cohan, L1 and Foghorn
She tops up our empty wine glasses and says “Jolene. Do you think I’m a bad person because I think about what music I will play at L1’s funeral?”
“Not at all,” I answer with a lump in my throat. My heart breaks for her.
You see L1 has cystic fibrosis. They found out from the heel prick test they did at birth.
For those of you not familiar with what Cystic Fibrosis is:
What are the characteristic features of cystic fibrosis (CF)?
How CF affects people is highly variable, even within families. Generally, however
- In the lungs, the mucus that is produced is thick and sticky,clogging the small air passages and encouraging bacteria to grow. Repeated infections and blockages can cause severe lung damage
- The ducts from the pancreas to the intestine can also become blocked. Normally, these ducts carry enzymes that are important for the digestion of food. Incomplete digestion results in weight loss in spite of a hearty appetite
- The sweat glands also secrete sweat that is very high in salt, thereby depleting the body of this important substance.
Daily physiotherapy, enzyme and nutrient supplements slow down the progression of the condition. As a result of early diagnosis and treatment, 50% of those with CF now live into their late 30s but the condition can severely affect their quality of life.
It is terminal and unless they find a cure or he receives a lung transplant she knows that he will die. How does a parent even function I wonder knowing this? But she does…every day she battles on. Although inside it may not feel like it to her, she is the strongest woman I know, and she isn’t going to let this disease take her son down without a bloody good fight. It’s just how she rolls.
“I just don’t get it,” she says shaking her head.
“One day L1 will be down to 30% lung capacity and they will put him on the waiting list for new lungs, but the chances of him actually getting some are not good.” Her strength to say these things, to accept them, breaks my heart.
This is her reality, and one she has faced for the last four years.
“Why don’t more people donate their organs? They don’t need them when they are dead. It just frustrates me.”
The realisation hits me like a freight truck.
All those years ago standing in the queue to collect my driver’s license with my paperwork in my hand. I had hovered over the organ donor box and then left it blank. The idea made me squeamish. Hubbster had looked at me non-plussed. “Why not? You won’t need them when you are dead. What better gift could you give someone than the gift of life?”
Still I left it blank.
But thankfully it’s not to late to change my mind. This year I am making a resolution that I can keep. One that will take just a few minutes for me, but could mean a whole lifetime to somebody else.
I have registered on the Australian Organ Donor Registry.
Will you join me?