Learning To Live

My grandfather passed away in March and I've been meaning to post the eulogy I gave.  Here it is: Walter was my grandpa.  He was also my hero.  We all knew him and loved him despite any faults.  The man who never spoke above a mumble and who had a comb-over long before I was born.  Some of my earliest and my best memories include Grandpa.  I'd like to share some of those memories. If I had to pick just one favorite memory, it would be catching lightning bugs at dusk.  When I was young I would spend a week on the Farm with my grandparents each summer.  I remember preparing for our nightly adventure by finding a mason jar and helping Grandpa pound holes into the lid so the bugs could breathe.  I remember watching the twinkling lights above the corn field, getting closer by the minute.  I would run around the yard capturing lightning bugs and Grandpa would hold the jar for me.  Once I had captured about 50 bugs we would take the ja...

Lately I've been feeling really lucky.  A woman I knew online died.  She was my age and had a double lung transplant but didn't have CF.  The headline on her blog is "When life hands you an illness...spread it."  I didn't know her well, but I did read her blog - and it's hilarious.  I think illness makes you funny.  It can make you profound and wise, as well, but the CFers I know are hilarious.  Especially my friend Lauren.  I've been thinking about her a lot lately, and I know she's not doing so well.  Even though she's pretty sick she can still make me laugh really hard.  One of my favorite memories of Lauren is going with her and a friend to Perkins.  Our waiter was "Sean" but she kept calling him "Seen" because of the way his name is spelled.  I laughed so hard I nearly peed my pants that night - and it's always that way when you're around Lauren.  I would love to be that funny - maybe someday if I'm that si...

May is busy.  I am attending 2 graduations, Great Strides, and trying to balance work and my life.  This spring feels like my graduation - a graduation into life.  I'm being thrown into the realization I'm an adult and I'm not so sure I like it.  When I was little I used to say that I wanted to stay a kid forever.  I'm sort of realizing why that wasn't such a bad idea.   I'm a grown up.  Are you serious?  You've got to be kidding me.  I'm still 7 and running around the backyard with my friends.  I'm playing with dolls wanting so badly to be 12 so I can babysit.  I'm still 12 and can't wait to be 16.  I'm 16 wanting to be in college.  I'm living in the dorms.  Am I really turning 25?  Why do I no longer consider 25 an adult? The other day I was driving my car around, listening to new music and enjoying the nice weather.  Then Taylor Swift's "Never Grow Up" came up on my iPod and and as the song played I c...

I've been busy.  Too busy at times, but I love being busy. I've been thinking a lot lately - about my blog, my book and my personal journal.  I want to write more.  The more I write the better I write.  If I write more I will eventually stumble upon and say something profound.  A couple days ago I read a post on a different CFer's blog , and it brought me to tears.  She wrote about losing many CF friends recently - and it reminded me of the year I lost 8 in just as many months.  She wrote about losing her best friend, and I cried for her and for me.  I miss having CF friends, and at best I have CF acquaintances.   I want friends again.  I want to be able to share and talk about how we deal with this disease.  Since I've been healthier I've avoided my CF friends, ignored my blog, and dropped out of online CF communities - communities I used to be such a big part of.  Part of me ignored it all because if I'm not involv...

My goal in life is to love and be loved.   It's that simple.  Last night I got an email from Chris and I want to share it here because I felt so loved.  Here it is: Hello everyone! One of my best friends, Carla, has a rare and serious illness called Cystic Fibrosis . Carla loves my son Luca, and has a lot of fun taking walks, playing games, hiding from pretend bears, looking for ducks, playing catch, reading, and all sorts of things with Luca. She is so close to us that she has spent some Thanksgivings and Christmases with us. She's also Luca's honorary auntie, from before he was even born. She's really part of our family. Here she is with Luca a couple of years ago:   The disease she deals with is debilitating and often leads to an early death. Since patients with the disease die early, pharmaceutical companies don't have much interest in trying to find a cure. As a result, most of the research is funded by donations to the Cystic Fibrosis Fou...