Monday, October 22, 2012

What do you mean I have a child with a terminal illness??

In this season of fundraising, I spend a lot of time talking to people about Cystic Fibrosis. I share the story of CF, where it comes from, how children are diagnosed, our diagnosis story.....There is a lot of personal information thrown around for the good of the community.....reliving a lot of heartache for a dollar.

I was giving my usual talk to a younger nurse about funding and the importance of private donations to our research and development when suddenly she pops out with, "Gosh, I just don't know how you do it." Confused, I curiously asked her which part she was referring to. I mean there are so many parts of this that are difficult. She looked at me quite honestly and said "I don't know how you can cope knowing that you will probably outlive your child."

I was floored. I mean, I don't live in a hole. I'm acutely aware of my situation. I'm aware of the possible outcomes.

But to hear it from someone else......

I was broken hearted.

I don't live in a mindset of defeat. I don't live in a world where that is the probable outcome....I live in a world where that is a possible, but very remote outcome.....

Why? Because I can save her, you can save her, we can save her......and everyone else with this disease. After all, we are so close. Right? I'm not delusional. Right? It's only a matter of time.....and we're going to make it....We're all going to make it.

We have to make it.

Here's to tomorrow.

All of my best. ~j

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