My Home, the Hospice
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.
When Heather feels overwhelmed by the mounting bills (over the past five years, the McNairs have averaged more than $25,000 a year in out-of-pocket medical expenses), she can think about the trip the family took to Disney World for Madison's wish. How Maddy "fell desperately in love" with Cinderella, how the villa they were given for the week was nicer than their home, how the Make-A-Wish folks paid for every meal and souvenir. When she realizes that it will be at least another four years before they can even be considered for a Medicaid waiver that will help pay for meds and doctor copays, she can think about the trip they took to Hawaii for Chance's wish. The helicopter ride Michael and Chance took over Mount Kilauea, exploring Pearl Harbor, eating shrimp scampi while watching the big waves come in on the North Shore. At the end of a 30-hour week on the phone, she can think about how, when it was time for Abigail's wish, Abby came up to her and said, "Mommy, what if we went someplace snowy? That way Maddy can play as much as she wants to and she won't get sick," because Maddy can't be outside in temperatures above 75 to 80 degrees.
There's so much more. The Wish Nights when the kids got to be kids, acting and singing in front of donors in tuxes and gowns. The art parties, one of which resulted in one of Chance's paintings being picked as part of a national Zales promotion, and an all-expenses-paid trip to The Today Show. The way the kids are giving back; Madison recently donated "her whole $7" to make a wish come true for a little girl--the second family they found at the local Make-A-Wish offices.
"That was almost as big as going on the wishes themselves, having another group of people that understands what we're going through and really cares about and is willing to listen and be there and support us," Heather says.
But what really makes all of it easier to deal with? Simple. The kids.
"They are three of the most charming and thoughtful children you could ever meet," Michael says, "and when I think about the challenges that each of them faces on a daily basis, I am beyond impressed. They have to deal with some rather frustrating issues and had some frightening medical procedures. Being children, they are supposed to be resilient, but no one would blame them if they were sullen and sad kids--and trust me, they aren't. I am always impressed by their ability to take on each day with extraordinary confidence and strength. When you get down to it, we are a very close-knit family. I would have to say that having each other has helped us deal with this disease and all that comes along with it." --Zac Crain
Green Seeks Greene
It's all there: the stickers; the buttons; the red, white and blue. But instead of cocktail sausages and chips, there's a spread of beef and chicken skewers. Instead of smooth jazz, there's a flamenco guitarist. A raffle gives away such things as a free hour of legal advice. Such is the fund raising for city council District 2 candidate and political neophyte Monica Barros-Greene. Greene is headed to the Green Room, fresh off her Dallas Morning News editorial page endorsement that said Greene--more so than her opponents Pauline Medrano and Se-Gwen Tyler--has a firm grasp on how to handle the pesky urban issues of crime, economic development and code enforcement.
"This is probably the most important election in the city of Dallas in a long time," insists Greene, a transsexual and restaurant owner who operates Monica's Aca y Alla in Deep Ellum and Ciudad in Uptown. "We're not at a tipping point; we're at a critical point."
Not surprisingly, this political loot-gathering was heavily attended by Dallas restaurateurs, who have long groaned about how City Hall seemingly slaps them around every chance it gets. "I feel it's important that we circle the wagons and support one of our own," says Amie Burgus, owner of Perry's Restaurant.
Passions really seethe when Dallas' permitting process is tossed into the discourse. "I'm supporting any candidate who is going to make doing business in the city of Dallas easier," insists Jeff Frankel, president of the Greater Dallas Restaurant Association and owner of Mattito's Tex Mex. Frankel winces as he relates the process he went through to obtain three different city permits from three separate locations in order to host a Cinco de Mayo celebration in his own parking lot this May. Not only that, the city slapped him with late fees for not conforming to its permitting timeline.
Yet the most pressing question is: Why did Greene begin hyphenating her name once she decided to run for council? "I didn't get married, by the way," she says. Greene explains it's customary in her native Mexico City to incorporate your mother's maiden name into your full name. Could this sudden reversion to the customary be a calculated appeal for Hispanic votes? "I don't know if it will help or hurt. Who's to ensure that?" she says. "Legally, I think it works. I use it on my credit cards. " --Mark Stuertz
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