Victory and Defeat.


This living with Cystic Fibrosis can be a bit of a strain on the brain from time to time. Especially when you are also committed to fundraising and finding a cure. I have said it before and I’ll say it again – it would be very, very easy for us to stick our head in the sand and live in the world of “our Cystic Fibrosis” – where Rowan simply takes a lot of medication and accepts chocolate in exchange for physio…. where we didn’t educate ourselves too, too much about what the future could look like. There are days when I wish so desperately that I could rewind and unlearn all that I have learned and un-see what I have seen.

Today is one of those days.

Today is one of those days when a friend sits alone beside a hospital bed with her little boy.

Today is one of those days when I think about the spunky 10 year old who gave up her last precious weeks of summer – to be in the hospital.

Today is the day when I cry for the family that is waiting for someone else to die so their beautiful young woman can live.

Today is the day that my heart aches so hard I can barely breathe for the Mamas who have watched their children die.

Today – I wish I could run away. Simple as that. I think sometimes we need to break down in a pile of compassion so overwhelming that we see things from every angle. We were supposed to learn and see these things…. Rowan has chosen this life as much as I have chosen mine – and we all chose to do it together. So I will fight – do you understand that? This isn’t really something I have a choice about. I will stumble, I will fail, I will learn and grow and thrive with every mistake I make… but I won’t give up. I will count my blessings. Every. Single. Day.

I will honour and respect those that have gone before us… I will cry and mourn for those who have paid the ultimate price. I will pray that I am strong enough to do all of them justice and let them know that I can’t explain why them, why their babies…

I will dare greatly.
I will know victory and defeat.

And I will hope.

I will always hope.


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