It started with a night of smooth sailing.
And intersected — some 20 years later — after some slight swelling.
“C’mon,” Troy Aikman said persuasively, “it’ll be fun.” The year was 1992 and Aikman was the star quarterback of the Dallas Cowboys. Charged with documenting his every move, sneeze and blink, I served as the tag-along, the gullible-yet-giddy reporter for the Fort Worth Star-Telegram. Next thing I knew we were on a huge boat, enjoying a sunset cruise on Lake Ray Hubbard.
Aikman was a VIP, a powerful personality who lent his influential name and considerable finances to the North Texas chapter of the Make-A-Wish Foundation. We dined. We drank. We sailed. We met numerous children with wide-eyed grins that camouflaged their dead-end prospects.
“I think it’s important for those of us who are blessed to take the time to give back,” I remember Aikman telling those aboard the boat.
I was hooked. I was also, as a 28-year-old sportswriter, flat-ass broke. Nonetheless, I wrote a $100 check and made myself a promise that night: If I ever have a sliver of fame and/or fortune, I too will make a dream come true for a child burdened by a life-threatening illness.
While I soon forgot that mission while busily navigating life’s materialistic journey toward bigger houses, flashier cars and designer sunglasses, 15 years later a boy in Carrollton would have his life shaped into both a mysterious illness for him and a jolting wake-up call for me.
“He was a normal, healthy, happy kid,” says Nancy of her son, Jackson. “One day I noticed some swelling — just a little puffiness — around his eyes. That was it. We had no idea our lives were about to change forever.’’
Six-year-old Jackson went to his doctor. “Allergies,” the pediatrician informed the family. “No big deal.” But within days the all-star basketball and baseball player that was just beginning to enjoy the fruits of being taller and more athletic than most kids his age was dramatically retaining water, gaining abnormal weight and going downhill.
In September 2007 Jackson was admitted to the hospital. And in a lot of ways he’s never gotten out.
Since then he’s been diagnosed with Nephrotic Syndrome, a unique and ambiguous illness that flushes excessive amounts of the body’s protein out in the urine and leaves patients susceptible to kidney failure and dangerous blood-clotting. Jackson’s rare cocktail of conditions is one of only five documented in the U.S. His treatment program has amounted to five years of darts in the dark.
“It’s extremely maddening because after all this time we still don’t know the source,” says Jackson’s father, Mark. “Don’t know what caused it. Don’t know what exactly will cure it. It’s all guesswork. That makes it frustrating… and scary.”
Jackson’s illness is classified as idiopathic, which is a fancy medical term for doctors dunno. The teams of physicians that have seen, assessed and treated him aren’t sure if he’ll eventually need a kidney transplant, dialysis or will ultimately suffer another episode like the one last summer.
In August of 2011 Jackson, his parents, older brother Brandon and little sister Grace were enjoying a staycation at the Gaylord Texan Hotel in Grapevine. It was a break for Jackson. From hospital visits. From daily treatment. From doctors. And it almost killed him. One day he simply collapsed on the floor.
It was a stroke. And over the next five days he would endure two more.
“Most people who have three strokes,” Mark says, “aren’t with us anymore.”
Jackson spent 11 days in intensive care clinging to life. His entire left side was paralyzed. He stayed in the hospital for five more weeks, then spent Monday-Friday under constant medical supervision through Thanksgiving.
“It was overwhelming,” says Nancy, dabbing her tears. “Only way to get through it is a lot of prayers and a lot of help.”
Stays at Presbyterian and Children’s Medical, Medical City – Children’s, UT-Southwestern and Our Children’s House on Dallas’ Swiss Avenue. Biopsies. Tests. Doctors. Experimental medicine. “Nasty things you don’t wish on any kid,” Mark says. And, these days, countless hours and days of rehab for his mind, body and spirit. It’s not the life for an 11-year-old boy, who should be more concerned with sports and video games and avoiding girls’ cooties.
But through it all a stubborn, super kid has emerged. Albeit now, since the strokes attacked his natural left side, mostly right-handed.
“Rock chalk Jayhawk,” Jackson says softly when asked about his favorite sports team, the one where his parents attended college. “And Dirk. I like the Mavericks.”
Jackson walks without a limp, talks without a stutter and is on schedule with his schooling, though he’s confined to an online curriculum from his home in Carrollton.
He’s big for his age — 5-foot-7 — and loves everything from The Avengers to online games such as Minecraft to Tex-Mex food. A couple years ago he attended Bill Self’s KU basketball camp in Lawrence. As he munches on mini-tacos at Dukes restaurant in Addison earlier this week, I ask Jackson what he is most excited about.
“Everything!” he beams.
Too often we get distracted by life and take our luxuries for granted. We waste our time lamenting the first wife, second mortgage and four tires that need rotating and wind up ignoring deep breaths, long walks and what we have, for what we want. We get consumed and obsessed by Deron Williams’ decision and Dez Bryant’s arrest and Josh Hamilton’s slump and…
But this summer as I approached my 48th birthday I realized I wasn’t heading for a mid-life crisis but rather a long overdue epiphany. Fortunate to be raised in a stable, two-parent home and blessed with good health, I admitted I have everything I need and more than I should ever want. I’ve got a house. Cars. Seen lots of international beaches and have attended almost every major sporting event from Super Bowls to Wimbledon to World Cups to The Olympics. After 18 years at the FWS-T, seven more at the Dallas Observer and now 3.5 in radio at 105.3 The Fan, I’m there.
Where? At the point I could only dream of back on that boat in ’92. Yep, as a birthday present to myself I’m finally giving back. I called the North Texas Make-A-Wish Foundation and for approximately $7,000 became a Wish Maker.
Sure enough, after all this time our interests are aligned, mine and Jackson’s. My wish is to make a dream come true. Jackson’s?
I wish I could go to Maui, Hawaii deep-sea fishing with family, attend luau, dinner cruise in ocean.
It’ll be the most rewarding gift I’ve given. Or received.
“We’re going to catch some big fish,” Jackson says, already wearing a blue Hawaiian shirt though the family doesn’t leave for another two weeks. “I hope so.”
In its 30th year in North Texas, Make-A-Wish will grant 500 wishes to children aged 2.5-18 with life-threatening illnesses. Unfortunately, there will be 1,200 kids diagnosed with similar illnesses in 2012. I’m just honored to be able to help one, if only to provide a temporary smile and perhaps an indelible memory for a kid who’s been dealt the business end of the life-ain’t-fair stick.
Jackson and his family will go to Maui in early August on my dime. Not long after he gets back — probably around January — there must be another risky, but necessary break from daily treatment and excessive meds that — doctors think — are currently harnessing his illness. At that point Jackson could find remission or… relapse.
Says Mark, “We’re just crossing our fingers that there won’t be a fourth stroke. That might be… it.”
Echoes Nancy, “Something like this really makes you evaluate what’s important in life. I know this, Jackson is a competitor and a fighter. We’re still hoping something good comes out of all this, and the trip is a great place to begin.”
Through sailing and swelling and 20 years, the journey now heads to Hawaii.
For some of us the destination of a truly rewarding and happy birthday is close. And for others, the trek is just starting.
No Jackson, thank you!
(© Copyright 2012 CBSDFW.COM, CBS Local a division of CBS Radio Inc. All Rights Reserved. This material may not be published, broadcast, rewritten or redistributed.)
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