Just returned from the Annual General Meeting of Cystic Fibrosis Canada and once again I am humbled beyond belief. The energy of a group of people all there for the same reason is tangible… Everywhere I turned I met so many examples of leadership – I was inspired by the commitment and dedication to this cause – Just when I’m not sure I can keep going… The Universe sends me the “You’re on the right track messages”…
This year a really prevalent theme was “how do we fundraise for a disease for people that the outlook has improved so substantially?” In other words, some are finding it challenging given that the life expectancy of individuals with Cystic Fibrosis is in the late 40’s; people are living more comfortably because of newborn screening. I understand that for these people the picture has changed so dramatically and so quickly (thanks in large part to the amazing work of Cystic Fibrosis Canada) – that, to them, it seems like a hard sell. I can understand and appreciate this. However, for me, as a Mama, all I know is my picture and our experience AND the fact that I have to EVER have a conversation about life expectancy of my child is abhorrent. The fact that I have to wish and pray and be paralyzed by the fear that my kid might not land on the right side of the median of that number is a hard enough sell for me.
The other piece of this equation is QUALITY of life… We have to consider a life made longer is not always a life made better… Again, I don’t have a hard time selling a condition that while these little kids can look so healthy on the inside Cystic Fibrosis is raging on the inside destroying their little bodies. When we consider that a disease is not as “life-threatening” as it used to be we need to shift the perspective. Maybe little kids aren’t dying at the alarming rate they used to but they ARE paying a price… with the progress that is made to make their lives longer the price they pay is the parts of their childhood that are marred by hours and hours of treatments and childhood that looks normal out on the street is not at all normal behind closed doors. What is not normal is being on antibiotics for more than half of your life, taking tens of thousands of pills, missing out on kid stuff because of treatments, being awakened by your parents in the night to check your blood sugars, being the kid that has had so many bowel obstructions you can’t help but poop your pants without warning, feeding tubes, picc lines, hospital stays… the list goes on, and on, and on…
The beautiful thing about the Annual General Meeting is that I am surrounded by so many people that are affected by Cystic Fibrosis is a much different way than we are… I love being reminded of why I feel compelled to do this; on the scale of Cystic Fibrosis – Rowan is beyond healthy; her medication list is quite short compared to some and treatments are mostly preventative and cautionary. This is not so for so many… the list of “not normal” examples above were things I was reminded of at this meeting… All of these parents that are buried in what Cystic Fibrosis means day to day – we fight for them too – how could they possibly find time to organize events and fundraise when some are faced with 3 to 5 hours of treatment per day (although some of them miraculously do)?
Then there are the people that fight with us…. it’s not their fight but they come to the battle anyway.. this year we celebrated 40 million dollars raised by Kin Canada… it’s such an honour to have them at our sides. So if they can show up – we can show up.
I think one of the biggest struggles – and the reason we see the advances as a limitation to our ability to fundraise – are these kids and the grown-ups that suffer with Cystic Fibrosis- Never in my life have I seen people so courageous and strong – the fact is; they make it look easy. This is not an easy life. That’s a fact.
So, I’ll keep on trucking… Obviously, with my feisty little blue eyed girl front of mind – but also thinking of the parents and families who are affected so much more profoundly than we are. I’ve backed down from fights before.. but not this one; not this time.