MARCH 4 — Floating in a Tin Can

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March 4, 2014   Boston

I happened to be looking for a particular photo last night, and came across these ones from exactly two years ago. March 4, 2014. Caitlin had been on IV meds for a couple of months, and after a long stay at the Brigham, it was clear it was time to head to UPMC to complete the lung transplant evaluation that had begun, proactively, in 2010 while she was still ‘well.’ The coordination of the transfer, hospital to hospital, had hit one snag after another. A week of snags. Finally, late on the night of the 4th, an ambulance brought us from the Brigham to Hanscom Airfield where we waited for the medical jet that was to bring us to Pittsburgh.

medjet

The tiny med-jet.

The night was cold. The jet was late, due to an emergency in Florida, and when it arrived, it taxied in so much tinier than I had expected. The crew—2 pilots and a nurse—swiftly got into action. They were cordial but all-business, bundling Caitlin into the rear with oxygen and monitors. After the bright, organized ambulance, the interior of this working jet, cluttered and dark, was a shock. I looked at it and thought, “You can’t get in that thing. You have to get in that thing.”

They stuffed me into a pop-up seat behind the pilot and we took off.

It was close to midnight, long past the time we would normally be asleep. I could see the moon through the cockpit. It was a waxing crescent moon, I remember that. But the rest of the trip is just a sense-memory of our bodies hurtling through darkness, the deafening noise of the engines. We were heading to a new hospital. Caitlin had finally reached the point where she needed a lung transplant. We didn’t know what was going to happen.

I wrote, in the last post on this blog, about my thoughts at that time. “Okay, let’s get this over with so life can get back to normal.” I’m glad I didn’t know I would be writing this post, here at my Pittsburgh desk, two years later, the big event still ahead of us, the details still unknown.

Two years, March to March:

alendar

So many days. Each day thinking, Maybe today. Have to be ready.

Caitlin’s been remarkably resilient, but as it gets tougher, physically and mentally, it’s also tough for people to understand exactly what’s going on—-with our situation, with her health. The other day, I posted a photo of her looking pretty darn great, laughing and holding Henry. But that’s the nature of both cystic fibrosis and photography. The looks of things can fool you.

Yesterday, the cabin fever was bad. We had to get out of the apartment, go for a little drive. We drove aimlessly, with no destination, until I noticed that we were close to a place called The Society for Contemporary Craft. I’d been there a couple of times, and pulled in. It’s a space that consists of a rotating art exhibit on one side, and artwork, for sale, on the other.

The exhibit, this time, was called “Mindful: Exploring Mental Health Through Art.”

Inside, the show was all about depression, breakdown, attempts to self-heal. “Mom,” she said, half-serious. “Did you bring me here on purpose?”

I laughed and said of course not.  She didn’t really like the exhibit — not her style. But it was something to do.

The exhibit concluded by having you follow a length of string down a hallway to an alcove, where the overhead criss-crossing of string became so closed-in as to be claustrophobic, and where visitors could give voice to their own methods of coping by writing their thoughts on squares of paper and tying them to the resulting spider’s web.

Shall we do it? Of course.

“This is one that goes through my mind a lot,” she said, writing.

sb

(Samuel Beckett.)

UPDATE:

Interesting coincidence we discovered after I published this post:

So last year, we moved from a “temp” apartment to a more home-like condominium here in Pittsburgh. The real estate agent was a lovely woman who told us that her daughter had a heart transplant years ago, was now in her 20s, and an accomplished artist. That seemed like some kind of good sign.

When Caitlin wrote on the slip of paper at the mental health art exhibit, I tied it to the string and tucked it into a tiny print of bananas that happened to be hanging there, which I admired. Turns out the banana art is a reproduction of a screen print by Gianna Paniagua, the very same artist. Wild.

 

—Maryanne

 

 

8 thoughts on “MARCH 4 — Floating in a Tin Can

  1. Marcia

    As strong as you both are, you are made weak by the trials of this endeavor. Please know that I think of you daily.

    Reply
  2. Jillian

    You never know what you’re going to come across, how it can effect your lives and then by sharing, how you effect the lives of others. No mistake in the visit to that gallery. Kaitlyn’s contribution will be quite valuable to someone, as it already has been to all of us who read this and support from near and far. Thank you both for this post. Thinking of you and your whole family.

    Reply
  3. Jillian Trailer-Rollock

    You never know what you’re going to come across, how it can affect your lives, and then by sharing, how you affect the lives of others. No mistake in the visit to that gallery. Caitlin’s contribution will be quite valuable to someone, as it already has been to all of us who read this and support from near and far. Thank you both for this post. Thinking of you and your whole family.

    Reply
  4. mjroseauthor

    Tears. That’s all. Just tears. Those word sum up the waiting better than any I could think of. We waited 18 months… all I remember is trying to just live each day. xxx

    Reply
  5. Laura McBride

    The thing about incredibly difficult times is that they demand toughness one didn’t choose to have. If there is a way to send strength through the ether, I am sending mine. We are all out here, wanting to hold you up.

    Reply
  6. Leslie Woods

    My husband and I sit here and can’t imagine how this can be. I wish I had the answer. I just think of that little girl in the canoe many years ago, whose life goal was to find a cure for CF. I was amazed at her strength then, and I am in awe of her strength now.

    We are praying for you daily, beautiful girl.
    xo

    Reply

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