Just returned from a very powerful Conference for Cystic Fibrosis Canada… I usually don’t like to write about something until I have all my ducks in a row and my thoughts collected in a linear kind of way… I want to write a blog post with “a point”. Today, I just can’t. Today I just want to puke it all out – just to get it out. I am always so inspired and motivated after these events – but also bruised and battered. I am so overwhelmed by all of the work I want to do – struggle to find the balance of fighting this fight with enough “balance” for the rest of our lives. Sometimes it feels so close – a cure – that I just want to spend every minute of every day fighting and shouting until I don’t have to anymore.
I meet many people at these conferences who have fought far harder battles than mine – and lost. Their commitment is both humbling and inspiring. I think of them… all those years ago.. trying to get on the map. Screaming to be heard – desperate to help their children. Imagine holding your precious new baby and being told they would not make it to kindergarten… Imagine that, marinate in that… and still they fought – and lost. And still they fight – and see that we are winning… still there is loss – not just of life – but just these little bits of childhood lost – and it’s not fair. I talk to parents who have children who are in hospital so much that they now WANT to be in hospital for their birthdays, for Halloween, for Christmas. Perhaps it’s comforting that this has become so normal that they are okay with it? As a parent I can only imagine how heartbreaking it is. There are parents and children that have not had an uninterrupted night of sleep for years because of feeding tubes and blood sugar checks. There are people with Cystic Fibrosis fighting to have access to a drug that will most certainly lengthen their lives – but it collects dust because of the cost. There are people fighting for every – single – breath – waiting for someone to die so that they can live.
Some days it’s hard because you don’t feel heard. Some days it feels like I don’t have the strength to hold my hand out anymore… to ask for money, support, exposure…. we all know I’ll find the strength… but some days are hard.
Some days are hard. Like today. When the emotion and the magnitude consume me.
Some days are hard. That’s all.