By Jim Schutze
By Rachel Watts
By Lauren Drewes Daniels
By Anna Merlan
By Lee Escobedo
By Eric Nicholson
My Home, the Hospice
With three kids facing a life-threatening illness, the McNair family lives one memory at a time
The day after Michael and Heather McNair's wedding, they were in the hospital. Michael's large intestine ruptured, a result of his battle with Crohn's disease, an inflammatory bowel disorder. He was in intensive care for a week, where his entire large intestine was removed, and stayed at the hospital another three weeks while he healed. Heather cleaned his wounds every day and slept on the floor next to his bed every night.
A month in a hospital may seem like an unusual honeymoon, but it may have been the most appropriate place for the McNairs' marriage to begin. In the 17 years since then, they have become all too familiar with doctors and hospitals. Heather can read medical journals without having to Google even the most arcane jargon and can rattle off complicated lists of drugs and supplements in her sleep. In fact, she probably does.
Michael isn't the reason for any of this, though at times they probably wish he was. Better that than the real reason: In April 2001, two of the McNairs' three children--Chance, now 11, and Madison, 8--were diagnosed with mitochondrial disease. Abigail, 7, was diagnosed with the disease in October 2003. "We call it 'mito' for short," Heather says, matter-of-factly.
The disease, according to the United Mitochondrial Disease Foundation, "results from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised."
In other words, it's life-threatening. More often than not, it's life-ending. It presents itself in many ways--Chance has autism and Tourette's syndrome; Madison has had hypotonia, a disorder that causes low muscle tone; Abigail is the least affected by the disease for now--but the end result is usually the same. At one point, because only the most severe cases were diagnosed, doctors didn't expect those stricken with the disease to live past age 5. Now that more is known about mitochondrial diseases, the prognosis has changed somewhat. Still, most children with "mito" aren't expected to make it to adulthood.
Put yourself there for a moment. Let it sink in. Your home turns into a hospice. Your three button-cute kids are now patients. "Vacations" are spent at places like the Mayo Clinic in Minnesota. It is difficult enough to imagine dealing with that scenario if it's only one of your children, only one of your babies. Magnify that by three and the world can become claustrophobic if you let it, a cruel joke with a grim punch line. So it's easy to sympathize with Michael when he sums up his initial reaction: "Denial."
"That was the coping mechanism that allowed my brain to get wrapped around the prognosis of this disease," he says. "Heather was very good about sharing what information she was able to get from the doctors as well as her own research. I would listen to her and ask questions, but in my mind, I was thinking, 'But this applies to other kids, not ours.' It took some time, and slowly, as I was emotionally able to deal with different aspects of having children with mito, the denial would roll back a bit. Eventually, I came to the full realization that this was real and I'd better come to terms with it."
Heather threw herself into researching the disease, her own version of denial.
"I'm not an overly controlling person, but I like to know what's going to happen, and I like to plan things and things like this," she says. "When you have children that have health issues, you don't get any of that. You have no control over anything, and everything really is out of your hands. That was my only sense of control: I've got to at least understand what's happening. And I do think that helped. I kept things on a very logical basis. I didn't have to feel the emotions that were lurking. I wasn't sure if I was going to be able to pull myself back out of it if I did."
That emotional black hole is a constant presence, since Heather spends virtually every waking hour with the kids; she's been homeschooling them for years because of learning disabilities and constant doctor's appointments. If she's not teaching them or dispensing medication or helping them with therapy, she's on the phone with clinics and insurance companies. There are weeks when the McNairs have to choose between food and medicine. The reality is always there, just waiting to catch her attention. But she has an escape hatch when times get tough, when the disease threatens to overtake them all: memories, most of them courtesy of the Make-A-Wish Foundation.