APRIL 16–Salt, Sweat, Pittsburgh

Today, Nick and I are on our way to………Pittsburgh. Yes.

But first, yesterday.

Yesterday, Jess, Nick and I had grandstand viewing passes at the Boston Marathon Finish Line. We cheered the finishers along with a mother and her two adult daughters–BAA volunteers–who fell in love with Jess. When Jess said she wanted to try to run the last mile with Andrew, whose progress we were tracking, they wished her luck.

A mile from the finish line, Jess somehow managed to talk the policemen into letting her  through the security barrier and she burst onto the course as Andrew approached. BAA course pictures show her exuberance, and they were both all smiles as Andrew crossed the finish line.

That was Andrew’s first marathon and he completed it in great time despite a recurring quad problem that hit him around mile 18 and which he needed to pop in and out of med tents to treat.

We are so proud of him!!! As of today his run has raised $13,387 for The Leo Project in Honor of Caitlin O’Hara. Construction of Jess’s resource center for kids is coming along right on schedule:

Wonderful and emotional.

It’s been an emotional few days.

This past Thursday, Mallory Smith’s mother Diane spoke at Grand Rounds at Brigham and Women’s Hospital. Her slideshow presentation on Mallory’s posthumous memoir, Salt in My Soul, An Unfinished Life, was brilliant and highlighted many of Mallory’s key insights about how medical professionals might improve patient care.

After age 18, Caitlin was always hospitalized at the Brigham. Before she became sick enough to need a transplant, I volunteered once a week there. I know that hospital very well and as I walked into the main lobby, it truly felt like I had JUST BEEN THERE.

Yet 5 years had passed. How? How does time mess with your head so much?  It’s been 5 years since Caitlin was actively listed for transplant and that fact makes my head spin.

Life disappeared right in front of our eyes.

I felt quite fragile and so visited the little chapel for a bit, then walked down to the amphitheater for the talk. Nick and Jess had not yet arrived. In came Ahmet Uluer, Caitlin’s beloved and longtime Boston CF doctor. It was hard but good to see him.

Here we all are in the audience. Ahmet is talking to Diane, Nick behind him. Jess. Me.

Diane left Boston for Pittsburgh, for more speaking sessions. She is still there,  and tonight our friends Mary and Ralph will host an event for Mallory’s book.

At first we didn’t think we would go. I, especially, wasn’t sure I was ready to be in that place again. But Mary reminded us of all the good that still remains in that city for us. She reminded us that so many people care about us. Jim Stanley, the driver who recorded The Sound of Silence for us, will pick us up.

So. We are off to see what awaits us. And Nick and I will be hosting an event ourselves for Mallory’s book, on July 10, and many of you will be there and this is how life goes on.

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For those who love the little signs ♥💛

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