Tuesday, May 18, 2010


This past weekend was our Great Strides Walk and it went well. Team Go Seamus Go raised almost $4000 and the whole site that day made almost $150,000. So it's a good thing, a wonderful thing, that I know is helping fund the great research that is getting so close.

But I hate it. I feel like everyone in the CF community gets so excited and has a good time but every year I hate it.

I hate it because it reminds me that my son's life literally depends on these stupid walks and begging people for money.

I hate it because I am so worried that one day soon, he's going to look at his face on those t-shirts and not say "Hey, that's cool that everyone is wearing a picture of me" but "What's so wrong with me that all these people are making a fuss?" and "Why are these people making speeches about young people being sick and dying too soon?"

I hate it that I have to worry if he's playing on the playground next to another little kid with CF who has something growing in their lungs that can kill him.

I hate it because it reminds me that Seamus' bouts of sickness seem to be getting more frequent and it is getting commonplace to hear his cough.

I hate it because it reminds me what this horrible disease has done to wonderful people like Eva and Conner and thousands more like my son.

So I'll leave it to other people to celebrate. I just don't have it in me.


Malin said...

I understand how you feel, but on the flip side I think Americans are amazing in organizing events such as these. I grew up in a society where you would rarely donate money to anything and a walk for any kind of cause except political demonstrations annually May 1.
Hopefully the money raised will be a great help!

Joel FInkelstein said...

Heya, it's Joel, Max's dad -- and I can say with no hesitation that Lauren and I totally, totally agree with you. We hate, hate, hate it. This year we couldn't even get motivated to start fundraising until a few weeks out.

You spend so much goddamn time in life fighting for some semblance of normalcy, and then once a year you have to go out and have a whole day thinking about the unthinkable. Plus the weeks and months leading up to it. It sucks. The people who come out to support you, and who give to support the walk, are wonderful and knowing they're with us in the fight is a huge deal and incredibly meaningful. But it doesn't come close to making up for how hard the walk is itself.

Every year we say it's going to be our last year, and then every year we rally and pull something together because we know we have to. Actually, what most motivates me is knowing how much we owe to the parents who came before us, the CF parents who founded the CF Foundation and fought for a cure when it was a lot more hopeless than it is today. We owe them so much, and I honestly have no idea how they did it.

Josh said...

Hi Julie. I love your honesty in this post. I've been through what you are going through. I struggle to fundraise for those very reasons. CF causes kids to grow up far too fast. :-( I know because I was one. I was a CFF poster child for all the events when I was little. I heard all the stories and as I got older I realized the seriousness of this illness...

I say take a break if you need to from fundraising. It's okay to do that. Come back and fundraise when you're soul is recharged.

Ultimately, your main job should always be what you are already doing...being a good mom and taking good care of your baby.

Peaceful Things.

Courtney Neal said...

I soooooo know how you're feeling right now!!! I'm sorry that Seamus and you are having a rough time right now.

Do you have Skype? We can talk on it and Olivia and Seamus could "meet".