Here is a sample from Closer By The Mile, the story of the Pan-Mass Challenge bike-a-thon for cancer research, published in 2013:
One day Sandy Fitzgerald was out walking with her amber-eyed granddaughter. She asked Hannah: “Do you think we’ll ever take life for granted again?”
“Grandma, never,” she said. “Never, ever.”
When she was seven, right around Thanksgiving Hannah Hughes just wasn’t herself. She was stuffed up and felt tired. A pain in her legs brought complaints, which was unusual. That Friday, when Sandy and her husband had Hannah and younger sister, Fiona, overnight, which is their tradition after the holiday, Hannah barely wanted to hang popcorn strings on the fresh Christmas tree. She’d recently asked Sandy to carry her bags in school. Her parents thought it might be a nagging sinus infection. Dark circles seemed to brood under her eyes, and her eyelids were a strange red. Hannah had black and blue marks all over. Tears rolled down her eyes as Hannah slept beside her grandmother.
When Jeff Hughes took his oldest child to the doctor the next Monday, they found an enlarged spleen and a white blood cell count that was through the roof. Her mom Rana was teaching a third grade class when the principal walked in. Your husband, he said, needs you to call.
Hannah was diagnosed with acute lymphoblastic leukemia. In just a few hours she was admitted to Albany Medical Center and began chemotherapy.
She has a rare genetic abnormality called the Philadelphia Chromosome-positive ALL. Having the chromosome makes one more susceptible to uncontrolled division of white blood cells that cause the disease. While not everyone with the Philadelphia Chromosome has positive ALL, children with positive ALL face an even higher risk of dying than those with some other forms of leukemia. She endured three rounds of treatments through that first winter. Then she underwent a successful bone marrow transplant with a donation from Fiona, who was five at the time. As Hannah’s health inched forward there were months of near isolation, starting with 40 days in her room at Boston Children’s Hospital, to avert any virus that might attack her depleted immune system. Then came a long rotation of checkups with her oncologist close to home in upstate New York, and sometimes driving to the clinic at Dana-Farber.
Hannah endured other trials similar to what many children with cancer face: a grueling rotation of immunizations and intravenous antibiotics, cut off from friends and school life, all while facing the unknown. A knot still tightens within Jeff and Rana as they await a blood cell count, though not quite so taut as in those early months. At one time they dreaded any infection that might compromise her transfusion line. And putting in the double-lumen catheter line during that first week was harrowing. Their brown-haired daughter was emaciated at less than 50 pounds. The surgeon doubted he could do it, as Hannah’s blood vessels were so tiny. He took off his mask, his face exhausted and creased. For an instant Rana thought the worst, the oncologist demanding, “You have to get it in.” Twenty minutes took four hours. Yet the line held. “We owe him a huge debt of gratitude,” her mom now declares.
Let the beauty we love be what we do.
Ken read this at Mike and PJ’s Memorial Celebration with friends and family members Nov. 16, 2012 at the Monponsett Inn, Halifax, Ma.
Thanks so much everyone for being here tonight.
I want to express my sense of what we’re doing here, why it’s so vital to come together to hold up both Mike and PJ 10 years later.
There’s a lot of pieces to this — we’re still picking up many pieces — so please bear with me for a few moments. I’m going to say a few things about appreciation, and how we continue to hold them close.
First I’d like to thank Mary and Sally, John and the entire Shaughnessy family for helping to organize and energize our celebration tonight. We hope it is a true party for many of you who knew PJ and Mike well. It’s also a joy for Denise and I to catch up again with many of Mike’s friends, and hear about the directions your lives are heading in.
A little bit later Sally will also encourage any of you who can share a story or anecdote worth recalling with PJ or Mike to come up. Perhaps some of the walls of those house parties and cottage get-aways, the poker nights, will creak open and speak tonight.
I want to start by reading a short poem Denise and I recently came across. It’s written by a 13th century Persian poet, Rumi. To me it suggests the varied paths that may open up inching us on forward after losing a loved one.
Today, like every other day, we wake up empty
and frightened. Don’t open the door to the study
and begin reading. Take down a musical instrument.
Let the beauty we love be what we do.
There are hundreds of ways to kneel and kiss the ground.
Let the beauty we love be what we do.
I chose this because I think it connects to how we may carry forward Mike and PJ in our lives — during our best moments. We celebrate the brightest in them. At times, we even run with that. Both beautiful guys in their own ways, both strong young men, with so much promise, and laughter, and life. I’m sure many of the photos in the slide show spark your memories and rekindle some of those connections. As does hopefully greeting one another here, whether in a moment of remembrance, or perhaps just realizing … it’s amazing what you are doing today.
Tonight, as many of you may do from time to time, we celebrate what we love most in each of them. We do not forget. We never will.
For Denise and I, we are fortunate to feel Mike close in our lives and what has become our life’s work. His presence is ongoing, unlike shelving away memories with photo albums on a bookcase. We try not to compartmentalize his life. He is with us, and a part of him endures.
For my family, if we can carry a slice of Mike’s spirit with us — that joy we see shining in his smile in so many of those photos — you guys had some really good times — if we can carry a little of that, if we can light up once in a while, maybe channel his cackle, or his thump up the steps over the threshold into our house; then we are truly walking forward. Or perhaps we feel a sense of Mike’s innate kindness, which he showed a lot towards younger kids — when we carry his spirit forward, we too, may be at our best.
Tonight some of the music itself hopefully will usher good memories. For some time at our house, Mike’s alarm used to wake us up — he had a song called “Business” by Eminem on it, which had one of those little keyboard repetitions you hear in some rap songs — the dit-dit-dit-dit. It annoyed the heck out of me then, and I wish it hadn’t. Cause I miss it now, and have kind of grown to enjoy it sometimes. You may hear that soon, and other songs that resonate for you in different ways. Feel free to give Davren — our DJ — your requests!
Each of us probably has our own slants or insights — the little things that remind us of these guys.
I have one short story, a memory that always stays with me. When Mike was five and six we lived up in Maine, near Augusta in a little town called Readfield. There was this long, deep lake nearby, Lake Maranacook, where he and I would go skate and pass the puck. One time, it was probably in February and pretty cold, we went out at the end of the day … I remember he had on a blaze orange wool cap and probably a blue winter jacket he was already growing out of, and we couldve skated for miles .. the winter sky held that deep bluish-purple light before dusk, which to me is a signature of winter in the north country, when the day is still and closing in and somehow resplendent and you don’t want to miss it. I remember feeling: this is boundless; here is he so free, so far to go, in any direction; and our relationship as father and son just what it should be; uncluttered, just feeding him the puck and watchcing him ago … and we always had that.
I’d like to offer a couple of things about appreciation and staying together.
To you, his friends, for Denise and I, we appreciate connecting with many of you from time to time. It helps us to keep moving ahead.
To see you developing — whether it’s hearing about John and Travis teaching at Marshfield High, or Brendan installing HVAC, Kevin troubleshooting IT and setting up networks, Griff joining the fire department where his dad once worked — whatever it is, all these things seem incredible to us. And your relationships, some starting married lives, or becoming engaged — or not — it kind of takes one’s breath away. I imagine it may be similar for the Shaughnessys connecting with PJ’s other friends from Tilton or elsewhere tonight.
Ten years — where does it go?
Most acutely for us, from time to time we hear a few of your stories about Mike, whichmay be new to us. And even how much you still think of him — what a friend he was to you. And what he means to you — today.
Jeff Walsh, I want to thank you probably foremost in this, because for me — in a few dark moments, I’ve sometimes wondered, does it matter? And you showed me how much he does, that his life does matter to you.
Jeff and Brittany, Denise and I also can’t thank you both enough — and everyone in your families — for including us in your wedding day. And wanting to be married where Mike is close by. It will be hard to top the celebration that night — though I imagine a few of you will try.
Briefly, I do want to also acknowledge a couple of things.
We can all ask what our lives would be like hearing PJ’s or Mike’s laughter tonight, their striding into a room to be with friends and family.
We all know they should be here. Young men, taking part in your weddings, probably in the wedding party, building careers, and developing relationships of their own. As brothers, uncle and sons, soulmates. All of us, with their grandparents, aunts and uncles, miss them incredibly.
Just speaking for my family, we cannot deny that the pain in knowing his life’s promise was snuffed out will never really go away. Yet we go forward, and he is always with us.
For Mike and PJ’s friends, many of you are in a magical time of your lives — so much taking off. For some, staying connected will be hard. It’s already happening; it’s logistics, it’s natural. It’s reality. And not everyone can sustain the same ties you had with PJ, or Mike, or Frank Madeiros, or others you may love and miss. That’s okay. If we don’t keep changing and learning, we wither. But here’s where I’m going with this: You are here now. Many of you gathered for Mike’s soccer tournament and I imagine for PJ’s golf tournament. Those times, as bittersweet as those days were, meant so much to our families: words are inadequate.
Keep showing up for each other.
Keep running hard. Keep skating hard. Continue to hold up the best in each other.
Continue to be there for one another during the tough times. (Paraphrasing Dr. Martin Luther King, Jr. here:) It’s easier to be around and be generous in times of abundance and joy; but our true measure is how we respond in times of despair.
(End) Before I offer a toast, I want to repeat that line from the poem:
Let the beauty we love be what we do.
A toast to Mike and PJ — To keeping them close in our lives.
To sharing the stories, among old friends, and with their cousins, and their brothers and sisters, and nephews and nieces who might be looking up to them tonight.
Keep showing up.
Keep on keepin‘ on.