Tuesday, August 3, 2010

My Cousin's Straightforward Answer To A Complicated CF Question

I'm pleased to share another guest post with you. One of the questions I've been asked my whole life is "How did your extended family - especially the children - deal with all of your cystic fibrosis hulabaloo?" (Okay, maybe they didn't say hulabaloo, but you get what I mean.) Who better to ask than my cousin (and one of my closest family members) who grew up right along side Angie and I? Take it away, Molly Marie...

Have to be honest, when I got Josh’s email I was immediately overwhelmed. What he’s looking for seems pretty straightforward (to quote the man himself, “an unbiased, non-agenda pushing, humorous, honest, and real perspective on how our family dealt with CF appearing in our lives, Angie's legacy, and your honest opinion on whatever else you want to talk about). But it’s a little more complicated than that.

Full disclosure: I didn’t really “get” what cystic fibrosis was as a kid. I thought everyone had cousins who unloaded weird mask treatments, handfulls of pills at every meal, and contraptions that beat your chest and back so hard they’d cough their lungs out every time they came over to your house. Trying to have a conversation about well, anything, was pretty funny when the other side of the conversation sounded (and kind of looked) like Darth Vader.

My brother and I would try on Angie and Josh’s therapy vest— this life jacket-esque inflated and shook so hard that eventually your chest, arms and neck started to go numb, and then eventually began to itch. I remember visiting Angie in the hospital and taking rides through the hallways on her IV stand. Now as an adult, I know that none of this was actually fun. This was ongoing, frustrating, often painful treatment. But rare were the times a complaint was heard, and I think that says a lot about Angie and Josh. They always had a smile on their face, never letting on to their two younger cousins that they were sick. We were just ordinary kids, doing regular stuff.

One day, I was shopping with my mom at Maplewood Mall. We were perusing the hosiery aisle at Carson Pier Scott when I started asking my mom some pressing questions. Why did all my aunts always take Angie shopping? Why did Grandma buy her the awesome Hyper Color t-shirt? Why does everyone treat Angie different than me? Angie was like the big sister I never had, and I suppose like sisters get, I was a little jealous of all the attention. My mother explained, matter-of-factly, that Angie was sick. Very sick, the prognosis was not good, and, in all likelihood, she didn’t have much time left with us. I understood. I was nine.

I remember Angie’s last few days. My parents brought my brother and I to the hospital every night. Even then, she always had something funny to say (talk about finally getting to have big boobs in Heaven still makes me laugh). I remember the last hug she gave me, the last time we said I love you, and I remember two days later when her little brother whispered in my ear, “She’s gone.”

It’s 17 years later, and I still think of Angie all the time. Whenever I hear the song, Get Out of My Dreams (Get into My Car), I think of us riding around in Grandpa’s Ford Galaxy with Unkie Bri-Bri filming our flirtatious giggles. I had her bedroom set until I graduated from high school (I wish I could still have a waterbed). I still have the copy of Shel Silverstein’s Where the Sidewalk Ends she and Josh gave me for my birthday. Angie inscribed it, signing her name in bubbly cursive letters, all of the i’s dotted with hearts and smiley faces. I remember thinking how totally cool her penmanship was, and failed miserably in my attempt to recreate her signature. I signed “Angela Nicole” three or four times, right there on the same page. It never looked quite right, and I hid the book from my parents because I thought I’d get in trouble for writing in it. And just four days ago, while cleaning at the cabin, WJJY played her favorite song, River of Dreams. I feel like that song was intended for her, and for everyone she left behind. I think I can speak for much of our family in that it eased a situation we weren’t ready to face. Every time I hear it, I have a different reaction. Sometimes tears, sometimes just a smile. If I’m with someone, I always tell them about her.

Angie, Josh, my brother and myself always had a special bond. Angie and I, the know-it-all, big sisters who liked to gossip and wear matching outfits. Josh and Andy, the goofy, wrestlin’, video game playin’ little brothers who wore sweat suits and imitated the Bushwackers. We girls were constantly annoyed with those boys, yet always managed to have fun.

Josh, I know she is so proud of you and everything you’re doing. You bring genuine love and laughter to kids, parents, cousins and friends who need it. Finding humor in a crummy situation sometimes seems inappropriate, but it’s when you can’t muster a laugh or crack a joke that hope is lost. That’s the great thing about laughing—even if it’s for just a moment—it makes everything else in the world disappear.

Joshland Note: Thank you for this post, Molly. I know this must have been hard for you to write, but what you just shared will be so helpful to the people who read this little blog. Being the writer that you are, you know the power of words and the magnitude of emotions they can bring. That's a special gift that not everyone is able to use.

The four of us were and always will be very close. Angie is always watching over you and I can tell you for damn sure that she loves your wit and charm. She loves the way you live your life and the ease in which you take on even the largest tasks. And that is why she loves you, that's just one of the many reasons I love you, and that is why "I kicked your leg out of your leg!"

(Sorry readers, that last line was an inside "wrestling nerd" joke. Only a select few have the privilege of "getting it".)

FYI - Check out Molly's blog on AndrewZimmern.com. She is Andrew's mediamonger and the editor of his website.

Andrew Zimmern is the co-creator, host and contributing producer of Travel Channel's hit series, Bizarre Foods with Andrew Zimmern and Andrew Zimmern's Bizarre World. He travels the world, exploring the food in its own terroir, wherever it's found. From restaurants to jungle markets, it's all about discovering the authentic experience.


Peaceful Things,

Josh & Molly


  1. Wow. What a wonderful post, Molly. Thanks for sharing. Another wonderful topic, Josh!

  2. Thanks guys! I hope everyone loves the nerdy photos as much as I do.

  3. Well done, my sweet niece, Molly. You are an amazing woman, and a great loving support to Josh. I loved that you had the bedroom set that Josh had to re-arrange constantly. I hope you still have the "Birthday Angel" as well, that I gave to each of the girl cousins, with the number of their age at the time she died. I treasure the 16th Angel myself. Thank you for loving Angela, both then and now. Your perspective is both eye-opening and heart-warming.
    Love you, Auntie Chrissie xoxox


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