Ceili’s Story

Site created on July 13, 2013

Welcome to our Caring Bridge website.  We've created this to keep friends and family updated on Ceili's progress and to give everyone an easy way to send words of support and encouragement.

In April 2013 Ceili began to experience pain in her upper back which came and went, but kept coming back.  We treated it as a muscle issue (pull? spasms?).  As they say in med school, "When you hear hooves, think horses not zebras."  After a few trips to the doctor and unsuccessful treatment, she got an X-ray on July 1 that showed a mass in the upper thoracic area.  The next day we were at Children's Hospital in DC where further tests showed a largish (8cm) tumor.  On July 10 we got biopsy results and the definitive diagnosis:  Ewing's sarcoma-- cancer. 

Sometimes those hooves are zebras . . .

So we've started a journey.  We are really fortunate to have an incredible team of doctors, nurses and staff at Children's guiding us, and fantastic family and friends along too.  Ceili's pediatrician has also been amazing.  Because she's so fit and healthy (otherwise), and has a great attitude, everyone feels pretty good about the road ahead.  It's rocky at times, but also shockingly beautiful in unexpected ways.  To quote our dear friend Michael:  every day is one step closer to the finish line.

Newest Update

Journal entry by John Leahy

As much as I would love for us all to be able to vote for Ceili, I think Ceili would just love for us to go out this year and vote.  I try not to wear my politics on my sleeve: just live your values and let actions speak.  That said, if you are reading this, you probably know how I lean.

Ceili believed in service.  Leslie believes in action. Our son John believes in people.  And I believe in voting.  (Okay, we all share pretty much the same beliefs, are basically meant for each other.)

I loved seeing Ceili wrap herself in issues that mattered to her because they were important in her communities— fair wages; human rights; women’s issues; a clean, livable environment; racial equity; and more.  Seeing her volunteer and serve, lead protests, and make a difference revealed the strength and depth of her character.

I love watching, and sometimes helping, as Leslie springs into action on a pile of mulch, a shrub needing pruning, or a 9th grader low on self-esteem.

I love seeing John in any group of people—friends, colleagues, students, whomever— and how he treats everyone with love and respect, not shying away from difficult conversations but weaving in humor, making space for vulnerabilities and trusting others’ sincerity.

And while I don’t particularly love talking politics with strangers, I am in my zone asking strangers to vote.  I think Leslie and the kids like seeing this passion in me, despite my dragging them along in the days and weeks before elections— and especially on Election Day— to knock on doors and simply ask if the resident has a plan to vote and if they need any help getting to the polls.

Ceili was at UVa and had just turned 18 before the 2014 election.  It was the first time we weren’t together on election day since I could remember, but— goddess bless her— she had registered in Charlottesville and did not forget to vote.  In my mind’s eye I still see her solemnly walking into the booth and, like me when I cast my first vote in 1980, feeling agency, like a bona fide participant in American civic life.

After she voted, she sent me the photos above, and I sent back a text and photo of the proud dad, which she screen shotted.  My message was not the wisest or most poetic thing a father has written to his child, but I was caught up in the moment and stand by the words (if not all the exclamation marks).

These days I see a lot online and in print that makes us doubt the importance of voting and the integrity of American institutions.  While the media are inherently built to attract eyeballs and clicks (click bait returns far more than bad-news bias ever did) I see powerful people and organizations trying to sow seeds of doubt about the value of voting, the reliability of elections, the trustworthiness of systems that ensure each vote is counted.  It’s BS.  Yes, we need to constantly check our systems and ensure they work.  But the arc of American history shows more and better election reliability, not worse.

Ceili’s grandmother, Helene, my mother-in-law, was a lifelong Republican.  She and her husband, Larry, used to joke that they would cancel each other out every election.  But they always voted.

Helene loved talking politics. With Ceili, the conversation with her ‘Gran’ would be much about LGBTQ+ issues and society’s treatment of the less privileged.  With me and my friends, topics ran the gamut. Helene listened and asked questions.  She offered her perspective and cited evidence to support it. She politely, respectfully disagreed with certain arguments, never making it personal.

Then, in 2016, Helene could not bring herself to vote. 

Every election cycle after 2016 she would ask Leslie, John, and me who we planned to support.  We’d walk through the pros and cons of each candidate, who we liked and who we didn’t.  She never sat out another election. It still feels like sitting out 2016 was her dying regret. I don’t doubt that those conversations with Ceili played a stronger role than anything we offered.

So when Leslie suggested that for this January 27th post, the eighth anniversary of Ceili’s death, I write about what Ceili would be up to now if she were still here, we decided she would be working to restore faith in voting and to elect leaders who share her values.  She would, we think, do this by volunteering and serving in her community.  She would let her actions and her strong voice speak.  She would bring along her brother’s belief in humanity, her mother’s energy, and her father’s hope for a future full of opportunity for everyone built on strong institutions.  And she’d likely bring along her goofy dog, Gracie, to make sure everyone would smile.

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