Nov. 24--Come Thanksgiving, many of us will pause to count our blessings.
Andrea Harvey will be counting hers. Though at first glance, it might not seem she has many to count.
Harvey's daughter, Lila, was born three months premature and with her lower organs fused together. She nearly died of necrotizing enterocolitis, a life-threatening infection in which parts of the bowel die.
Lila, who just turned 1, still breathes with the help of a ventilator attached to a tracheotomy. Unable to eat, she gets breast milk through a feeding tube in her stomach. She is tethered to a handful of tubes that stretch between her and an IV pole like long strands of spaghetti.
She has never left Lurie Children's Hospital.
If that doesn't seem enough of a challenge to a sense of seasonal gratitude, add this: Andrea's parents, cousin and aunt, who live in downstate Washington, lost their homes in last year's tornado.
Oh -- and her husband, Steve Harvey, has Stage 4 melanoma.
And yet she intends to do full justice to Thanksgiving, and over dinner with her family give true thanks.
In the pediatric intensive care unit at Lurie, she cradled her daughter in her arms and beamed down at a major reason she is thankful.
Lila was smiling and grabbing her mother's chin like any other baby. She is medically fragile but inching forward. There is a possibility of her going home -- on a ventilator, with home nursing help and Andrea Harvey as full-time caregiver -- in January.
"When you think how far she's come ... it's remarkable," she said.
I went to Lurie to see how parents of seriously ill children feel about Thanksgiving. Under the circumstances, would they want to give thanks?
Families react in different ways to the holidays, said Dr. Joel Frader, medical director of the pediatric palliative care team at Lurie.
Some are so focused on their sick children that they barely notice the holidays, he said. Some celebrate at the hospital, gathering their families and often hospital staff members for what can be a beautiful and happy occasion.
"And then there are the families that find it very tough indeed," he said, and are filled with sadness at having to be in the hospital with a sick child at a usually joyous time.
As for Thanksgiving, he said, many families focus on the meal rather than a formal expression of gratitude. But for those who do customarily express thanks, he said, the task would no doubt be harder if their child were getting sicker or dying.
Harvey's gratitude is sharpened by her awareness that things could have been very different. During her pregnancy, doctors had mistakenly thought Lila had a heart condition that would be fatal.
"I know she has challenges, but I'm coming from a place where they told me she would never be born alive," she said.
She is thankful but not delusional.
"I've had many, many days when I was frustrated. I cried, I screamed, I yelled 'It's unfair,'" she said. "There was a week in February where my husband and my daughter each had major surgery, with one day between them. It was the most stressful week of my entire life."
And this Thanksgiving is harder than last year's, when Lila was doing well and had not yet developed the near-fatal infection, which has set her back considerably.
"This year it's a little bit darker," Harvey said. "While I am extremely grateful, it's very bittersweet. When we go around the table this year and we talk about what we're grateful for, I can't help but think of all the horrible things that have happened and all the things we missed out on."
And yet she still has things to talk about at the table, because here are the good things that have happened:
Her large family has been a rock of support she can't imagine doing without.
She and her husband saw their friends step forward to offer help, too. Those who lived out of town held fundraisers; those who lived here did anything needed.
"A bunch of people came to our apartment and packed us up" for their move to a new apartment over the weekend, she said. "Friends, co-workers, former co-workers -- everyone was coming out of the woodwork."
The Lurie staff was wonderful, she said: "The nurses took care of Lila like she was their own. I can never repay them."
Her parents are building a new house to replace the one destroyed by the tornado.
And "my husband is better," she said. "His treatments have been working finally; he's finally hopeful about his prognosis.
"My whole family is still here. Everyone survived; everyone is doing well," she said. "We have so much to be thankful for."
For Andrea Harvey, Thanksgiving won't be just about the things that have happened, but the people who have helped her and her husband endure them.
Gathered around our own tables this Thanksgiving, we might find ourselves wondering at the places gratitude can thrive, as we offer up our own thanks.
blbrotman@tribpub.com
