Tag Archives: cff

APRIL 6–Master of the Suck-It-Up Smile

A courageous ray of light..

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Caitlin’s cousin Melissa is a sweet and noble soul, and her write-up for the “Xtreme Hike” (30 miles in one day) that she is training for in honor of Caitlin, to raise $$ for the Cystic Fibrosis Foundation, both breaks my heart and uplifts it at once.

Caitlin was ‘a courageous ray of light,’ she writes, and this photo, from Melissa’s wedding day, reminds me of just how true that was.

The wedding had been planned for months. We were hosting the ceremony at our house, under the beautiful willow tree by our river. Caitlin would be a bridesmaid.

But just before the wedding, Caitlin got sick. She had to start one of her 3-week courses of IV antibiotics. Besides being sick enough to need 3 weeks of IV meds, taking them always knocked her flat. Typically, there was a 1-hour infusion of one heavy-duty antibiotic every 8 hours, plus a 4pm-ish dose of another one—- usually the worst one—- the one that would really make the nausea kick in and make her lie down and say, ‘Suddenly I feel awful!’ As if she was surprised. Even though it happened every day.

‘Suddenly’ had become a joke, a word we used whenever we wanted to indicate we weren’t feeling well during a time when of course we weren’t feeling well.

But this particular June, she worried. She didn’t want to let Melissa down, but she also didn’t know how she would ever make it through the day: the morning preparations that would be taking place in our house, the ceremony itself with all that standing, the 4pm infusion and then the hours of the reception.

But make it through the day she did. And aside from the telltale bandage that always covered her IV lines, she never let on that she felt like anything other than the supportive bridesmaid and loving cousin that she was. Because she didn’t want any attention on herself, and especially didn’t want Melissa to worry about her, or feel bad, in any way, on her wedding day.

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At Melissa’s wedding ceremony

Sweet Melissa (yep, named after the Allman Brothers song by my hippie-ish brother Billy, her dad), is grateful for the support she’s received for this hike. She’s psyched to do it, and she’s training hard. It happens in June.

Caitlin had really hoped to participate in these kinds of fundraisers after transplant. She had hoped to do a lot of things. Hike. Run again. Climb stairs.

But let’s not forget that she did get to do a lot of things, like live beyond birth, that a CF kid 50 or 100 or many more years ago would never have been able to do, thanks to all the research that so quickly benefited her after her diagnosis, and which continues to benefit other sweet and wonderful beings.

Life expectancy, in general—-well, here you go:

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Seize the day, my friends

It will be fascinating to see what the future holds. We are still so primitive in so many ways.

–M