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Family that endures much suffering perseveres with thankfulness, an amazing outlook

Saturday 13 November 2010

The McGee family
Kelly and Sarah McGee with their sons
Evan, 7, foreground, and Luke, 9
(Photo: T.J. Hamilton | The Grand Rapids Press)

From Michigan Live LLC:

Family that endures much suffering perseveres with thankfulness, an amazing outlook

By Tom Rademacher
Published: Sunday, November 07, 2010, 6:00 AM
Updated: Sunday, November 07, 2010, 7:38 AM

Where do I start?

The mother battles fibromyalgia and endures daily pain. The dad is on his second bout with skin cancer, suffers from kidney stones and is recovering from surgery for a hernia caused by having to constantly lift a son who has a deadly disease. An older brother’s health is in serious flux.

In the past several months, the bottom fell out of the family’s washing machine, flooding their basement and creating mold problems. Their only full bathroom has become so dysfunctional that all four have been bathing at a relative’s home a mile away. The house looks as though someone came through with a wrecking bar, the effects of the younger son, whose hyperactivity causes him to literally bounce off the walls.

Both parents work — the dad a trio of jobs — and they do have insurance. But they are barely staying afloat, thanks to incidental expenses that aren’t covered, and a perfect storm that has enveloped their health and their home.

Yet, this was the last thing I heard from Sarah McGee before I left: “Our lifeboat’s gotten a little rickety. I’m just thankful I’ve got an amazing husband.”

Then, the husband, Kelly, said this: “I don’t know what I’d change. You have to realize that life is a series of chapters. All the hopes and dreams you once had might not happen. But, on the days you don’t want to get up, you just do.”

If you were searching for a family to put on a poster that illuminated the quietly hurting among us, it might be the McGees — Kelly and Sarah and their two sons, Luke, 9, and Evan, 7.

They are even tougher to discover because of where they live — in a Rockford neighborhood called the Highlands where there are not outward signs of the sort of daily trauma the McGees face.

Behind closed doors, though, a mom and dad live with the knowledge that Evan will not survive mitochondrial disease of the brain, an energy crisis at the cellular level for which there is no cure.

“In the beginning,” said Sarah, who was told by doctors Evan wouldn’t see 3 years old, “we were living for his death.”

Evan, who attends special classes in Sparta, has seizures, is profoundly mentally impaired, does not communicate clearly, often needs to be lifted from room to room and has trouble regulating his body temperature. His unintentional thrashing about in the family’s lone bathtub created so much damage to the floor that the room is now off-limits, forcing the family to bathe at Sarah’s sister’s home.

The kitchen cabinets aren’t in much better shape, again, the result of Evan’s involuntary flailing.

Kelly, who is slight in stature, suffered a hernia from the constant need to lift and carry Evan.

Their older boy, Luke, has the same disease, but is not so severely affected. Still, his eyesight could be gravely affected within a few years.

What he lacks in gross motor skills is more than made up by his ability to express himself. In an essay he penned recently for school, it began, “I am the luckiest kid in the world, because I have the greatest brother.”

‘Blessed beyond measure’

It wasn’t long ago that someone wondered aloud in Sarah’s presence whether she and her family were a “crap magnet,” given the way things have caved in on them of late.

The comment affected her, but not like you might think.

“I realized,” she said, “that I am living the dream. I have a husband. I have a home. We have two beautiful boys. And I am blessed beyond measure with the support we’ve had.”

For one, there’s a modest annual golf outing staged by friends, with proceeds going to the family.

Luke’s school family at Valley View Elementary has pitched in recently with fundraisers. 
The Make-A-Wish Foundation came through with some special furniture.

And an anonymous person came through with a new washing machine.

Still, there are a bathroom and basement floor to redo and, on an annual income of about $55,000, Kelly and Sarah don’t have the funds. Their last bit of savings went to buy a new furnace and air conditioning, which is vital in regulating their sons’ body temperatures.

They were visibly embarrassed in reluctantly allowing me to visit. You might be, too, in having to explain that another of their needs is special locks on the doors and slider to keep Evan from escaping the home — a nightmarish thought that keeps both parents from getting sound sleep.

Working hard

Sarah works part-time for the Grand Rapids Public Library. Kelly is a media specialist for Godfrey-Lee schools, and part-time librarian and adjunct instructor at Aquinas College.

When he comes home after long days working, Sarah said, “I could understand how he might want to decompress. But he just takes off his name tag and hits the ground running.”

Both agree their marriage has never been better, which you might not expect from a family on the ropes.

“We realized our relationship is the most important thing,” said Kelly, who quotes his mother-in-law on how, “in an airplane, you get your own mask on first and, then, you can take care of others.”

Their attitude stuns teachers such as Megan McCall, who has Luke in her 4th-grade room at Valley View Elementary: “There aren’t enough hours to tell you of all the tragedies this family has endured,” she said. “Every day there is some type of challenge for these amazing people, but they continue to persevere. They have this amazing love for each other.”

While their lives haven’t turned out the way they planned, the McGees are resigned to accept what comes: “We feel chosen,” Sarah said of how she and Kelly were blessed with Evan and Luke.

Then, she offered something that can only be understood by those who have survived their own crosses or can empathize on a profound level.

“We’re all vulnerable,” Sarah said. “Who of us isn’t just one phone call away from a diagnosis with cancer? To be told your child has a disease?

“I think a lot of us take things for granted.”

A fund has been established to help the McGees. Checks should be made out to “The McGee Family” and sent to Independent Bank at 78 S. Main St., Rockford, MI 49341.

E-mail Tom Rademacher: rademachertom@gmail.com

The above originally appeared here.

 


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