Day 156: Countdowns

Sam wanted to know at 8:12 p.m. exactly when it would be “official.”

“Three hours and forty-eight minutes,” I told him.  “That’s when you’ll be 8!”

“Really!” said a relieved Sam.  He thought he’d have to wait most of the day to celebrate his birthday as he wasn’t born until 6:30 p.m.  on March 11, 2008.

There’s been a lot of talk of countdowns in my family this week.  Today we celebrate two: Sam’s birthday and the conclusion of Nate’s chemotherapy.

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I’m thinking about where I was eight years ago this moment.  I was asleep.  In about two hours I would wake to the start of labor.  I had no idea how to be a mom or that thousands of tiny, wonderful moments awaited me.

I also had no clue how to adjust my life to accommodate change that new life inevitably brings.  With this, I have stumbled and struggled.  It’s taken these eight years to become comfortable with just the idea of this blog’s theme — that life is what happens to you while you are busy making other plans.  Parenthood has been a great teacher.  And yesterday I got another lesson.

Nate’s chemotherapy was supposed to finish at 9 p.m. March 10.  In my head I imagined how it would play out: we’d all gather around Nate’s bedside as nurses unleashed him from the chemo line.  We’d cheer and ring our noisemakers.  My family and the nurses would eat cake.  Of course there’d be a video of the celebration.  Nate and Sam would be laughing.  Most importantly, the end of Nate’s chemotherapy would finish the day before Sam’s birthday so Sam wouldn’t have to share his special day.

matethegreat

But as it is, the chemo didn’t stop until 12:36 a.m. today.  Interruptions with the chemo pump throughout the week caused a delay.  I sent Ted, Sam and Kim home hours ago.  And the cake I bought to celebrate?  Well, the woman at the supermarket’s bakery apparently thought I said my son’s name was “Mate.”

The day didn’t turn out as planned. And that’s a good thing because today was beautiful.  Every moment.  We celebrated all day, not just for ten minutes at exactly 9 p.m. as I initially envisioned.

I awoke to find Nate’s hospital door gleefully proclaiming “Last Chemo!”spelled out just above two leprechauns.  A clever nurse with a great sense of humor had rearranged my “Luck of the Irish” decoration to a more personalized message for Nate.

lastchemo

Then Kim, my awesome sister-in-law, flew in from Boston to spend time with her nephews.  We shopped at a party store for noisemakers, balloons and banners for both boys’ celebrations.  We made it back in time for rounds and handed noisemakers to the residents and attending physician who were happy to cheer Nate’s last day of chemo.

auntiekim

Kim visited with Nate so I could take a break.  I even had time to go to dinner with friends.  When I came back to the hospital, Kim, Ted and Sam were together having fun with Nate.  Although they couldn’t stay until the chemo finished, they congratulated him before leaving.

Nate and I spent the rest of the evening as we normally do and sometime after 10 p.m. he fell asleep in my arms.  His nurse came in and told me she anticipated Nate would finish the chemo at around 12:30 a.m.  She and her colleague returned moments before Nate completed his infusion.  They quietly watched with me as the pump went to zero.  Then they unhooked him.  

I broke into tears.  They hugged me.  A few minutes later, our nurse asked me to come to the nurse’s station.  Gathered together were several of our heroic nurses.  They  congratulated me and we then then dug into the “Mate the Great” cake.  It was perfect.

Now it’s time for bed.  In a few hours another day of celebration begins.

Who knows what will happen.

Happy Birthday Sam!  Thank you for making me a mom.  Thank you for thousands of tiny, wonderful moments.  Thank you for first teaching me how to let go of “other plans” so that I can experience life.  You have given me the strength to see your little brother through these past six months and I will be forever grateful.

Day 147: The powderman and the plutocrat

This campaign season, we’ve heard a lot about the evils of the richest 1% of the country. But, as is so often the case, there’s another side to the story.

My family owes a great debt to a one-percenter who died more than 80 years ago. As you know, if you’ve been reading this blog, for the last six months we’ve been living in a local hospital, and that makes us guests of Alfred Irenee du Pont de Nemours.

Our 19-month-old son, Nate, has been undergoing treatment for leukemia at the Nemours/Alfred I. duPont Hospital for Children in Wilmington. This is the hospital that “Mr. Alfred,” as he was called when he worked at his family’s gunpowder factory, established in his will. And I’m grateful that he did.

The extraordinary doctors and nurses at Nemours have saved our son’s life twice in less than two years. First, there was successful open heart surgery when Nate was just five weeks old. Then, since October, there’s been the chemotherapy that’s driving Nate’s cancer into remission, hopefully, forever.

Mr. Alfred was many things: a powderman, a pugilist, a poet, a philanthropist. (He was also a banker, an engineer, and a musician, but I can’t think of “p” words for those.) And he was, from the moment of his birth, a plutocrat. That’s an old-fashioned word for a one-percenter.

Throughout his life, he experienced what it is to have enormous wealth. He also experienced what it is to have enormous suffering. Both his parents died in the same year when he was just 13. In adulthood, he went deaf and was blinded in one eye.

St. Paul wrote, “that tribulation worketh patience; and patience, experience; and experience, hope.” And so it was with Alfred, whose great hope was to improve the lot of his fellow human beings. Like Franklin Roosevelt, another aristocrat who learned firsthand how frail we all are, the hardships of Alfred’s life led him to develop sympathy for the downtrodden, the underdogs. And he acted on those sympathies.

Before there was a federal Social Security program, Alfred pushed Delaware to adopt a pension program for the elderly. While the state dithered over it, he decided to set up the system himself. He put up the money and had checks mailed to seniors up and down the state.

Alfred’s kindness (as well as his foibles) are brilliantly detailed in Alfred I. DuPont, The Family Rebel by Marquis James. I read this book while keeping Nate company in his hospital room. It was quite an experience to read about Alfred while being surrounded by the greatest manifestations of his legacy. Nate’s room overlooks Nemours Mansion, Alfred’s 300-acre estate patterned after Versailles.

Nemours

It was an act of posthumous generosity that ensured Alfred would leave such a lasting legacy. (In that, he was like a decidedly eccentric one-percenter, Howard Hughes, who endowed the Howard Hughes Medical Insitute.)

Alfred left most of his fortune to charity when he died in 1935, writing in his will: “It has been my firm conviction throughout life that it is the duty of everyone in the world to do what is within his power to alleviate human suffering.” His money was used to create the Nemours Children’s Health System that today operates world-class hospitals in Delaware and Florida that treat thousands of children, including our Nate, every year.

Alfred’s life underscores a fundamental truth: Whether you’re a one-percenter, or a 321er like Nate, you shouldn’t be judged based on a group stereotype, you should be loved as an individual.

That’s a lesson a certain one-percenter running for President might want to recall.

Today’s blog entry is written by Ted to express our thanks to the legacy of Alfred I. du Pont.