Thank YOU, Jesse, for herding the cats.
And thank you to all of you for joining us here today to celebrate –
THE BRIEF WONDROUS LIFE OF MALLORY BEATRICE SMITH.
[Jesse:] Mallory always lived happy, and taught Diane and Mark to do likewise. And she did this with full awareness of her own mortality.
[Mark:] One afternoon, when she was 9 years old, Mallory refused to do her airway clearance treatment. Diane, usually so persuasive, couldn’t make any headway with her. She called me at work and asked me to come home to see what I could do.
I sat down with Mallory at the kitchen table. Knowing it was not time for sugar-coating, I said, “Sweetheart, we don’t insist that you to do your treatments just so you’ll feel better. If you don’t do them, you WILL get sick and die.”
Mallory burst into tears, leapt up, ran into her room, and slammed the door … twice! I asked myself, “Have I been cruel, forcing upon a 9-year old the certain knowledge of her own death?”
Mallory didn’t speak to me for three days after that, but she never missed another treatment. And she wrote her high school Health class term paper on improvements in the mean survival age of cystic fibrosis patients.
Forced to grow up early, she was always an old soul. Unlike many teenagers and twenty-somethings, she never acted like she was in a dress rehearsal. Life was opening night for Mallory.
She connected with me differently than with her mother. Diane was her Wingmom; I was more the academic consultant. Our connection was intellectual… humorous… literary and… sadly… medical.
Before she could read, I read aloud to her. On car trips, we listened to audiobooks. And when she started to read on her own, I tried to keep up with her voracious, eclectic reading appetite, until I couldn’t anymore. We formed an informal two-person book club. We learned from our reading, and from each other.
When we read Slaughterhouse 5, by Kurt Vonnegut, Jr., we learned the lesson that Billy Pilgrim learned from the Tralfamadorians:
When a person dies, he only appears to die. He is still very much alive in the past, so it is silly for people to cry at his funeral. All moments, past, present and future, always have existed and always will exist. Tralfamadorians see the moments together in one glance, the way we see a mountain range. Seeing a dead person, a Tralfamadorian notes that the person is in bad condition in that particular moment, but that the same person is just fine in plenty of other moments. He shrugs what he has instead of shoulders and says, “So it goes.”
Mallory had a highly developed sense of humor, and was unflaggingly kind. She always laughed at my jokes, no matter how many times she had heard them before. One night at the dinner table, Diane scolded me for forgetting to do something I had promised to do, saying “You’re really in the doghouse.” Looking up guiltily, I said, “Woof!” Mallory laughed so hard that milk sprayed out of her nostrils. Much more than my feeble attempt at humor, her spontaneous response had defused the tension.
I loved every minute I got to spend with Mallory. My grief today is dwarfed by the joy she gave me. I will be forever thankful for the 25 years I had with her … and to whom do I offer these thanks?
TO DIANE! Without her clearsighted sensitivity, her tenacious persistence and her unerring judgment, Mallory would not have lived into her teens.
Diane arranged playdates for Mallory, but only with girls whose mothers would dispense her enzyme pills. When Mallory asked if she could take piano lessons, Diane said, “No! We can’t have you sitting around inside when its sunny outside. YOU should be outside, playing soccer,” and thus began Mallory’s impressive athletic career. Diane never missed a soccer, basketball or water polo game, a volleyball match, or a swim meet, at home or away.
When Mallory’s health started to decline, Diane became her fiercest advocate. She did battle with stupid hospital policies, lazy nurses, non-compliant doctors, and murderous health insurance companies. When she and Mallory were on the way to the airport to go to Pittsburgh for Mallory’s initial transplant evaluation, the hospital called and told them not to come, because the insurance coverage hadn’t been approved. Diane did not even think about turning back. Working her phones and email from the car, the airport terminal and the airplane itself, with an assist from Don Fracchia, she persuaded the insurance company to reverse itself, and they confirmed … in writing … that UPMC was approved for the evaluation and for the transplant itself, and would be treated as an in-network provider.
So thank you, Diane, for myself and on behalf of everyone who loved Mallory, for your superhuman efforts that gave Mallory the most normal, the most wonderful, life she could have had in her circumstances. And thank you most of all for the last ten years we all had with her.
We will miss you, my darling Mallory. We will strive to live our lives so as to be worthy of your memory.
Rest in peace.
So it goes.
