Kal-El’s superpower is life
Kal-El has a couple of questions.
Do you have a dog, he asks me. Yes. Then we talk about his German Shepherd named Sarge, Saylor the Boston Terrier, and two Australian Shepherds, Dundee and Moose, that run around the family’s Pike County yard with the chickens, turkeys, couple of cats and pot-bellied pig.
What kind of truck do you have?
With a little discussion and clarification on the make and model of my SUV he admits that his favorite trucks are big trucks. My Ford Explorer is not a “big” truck.
We move on.
Do you have a four-wheeler? I don’t.
A side-by-side sits nearby in the yard, and Kal-El is lining up his real question.
Do you want to go for a ride?
Going for a ride means taking the 17-year-old for a drive around the county roads and across a nearby bumpy stream bed–the bumpier the ride, the better.
Margie and Scott Wright, his parents, consent and Kal-El and I take a drive on the lonely county road dotted by farms and a few other homes with side-by-sides in their yards. I don’t know if I make it to the bumpy stream bed, but according to his persistent smile, Kal-El seems satisfied with the ride.
When we return, Scott tells me I’ve checked off all the boxes for being Kal-El’s friend.
I met Kal-El at the annual Night to Shine event held at Redemption Christian Church earlier this year. That night, he said he was excited about shaking his booty on the dance floor and, in form with his fascination with trucks, riding in the extended SUV limousine for his red carpet entrance.
It was an overwhelmingly beautiful night of joy and fun, and Kal-El was featured in the photo spread we created for the event.
In May, his mom, Margie, contacted me about Kal-El being chosen as one of the first ambassadors for Families for HoPE an organization that supports families with children with holoprosencephaly. Holoprosencephaly (HPE) is a congenital condition that causes a developing baby’s brain to not properly separate into the right and left hemispheres (halves).
When Margie was pregnant with Kal-El, her obstetrician had noted he had hydrocephaly, a build-up of spinal fluid in the brain ventricles. This can cause pressure on the brain and lead to brain damage, but her doctor reassured her and sent her to a neurologist.
It wasn’t until after he was born that Margie learned the extent of his condition. After a rough birth, Kal-El was taken to the NICU, and doctors diagnosed him with HPE.
“They didn’t even try to give him his first bottle until he was three days old,” she said. “They just said he wouldn’t have any quality of life.”
She believed in Kal-El, though.
At 17, he’s a walking miracle; a superman. He’s earned the name given to the Man of Steel by his Kryptonian parents in the comics.
Most pregnancies involving a fetus diagnosed with HPE end in miscarriages. Current studies indicate that only 3 percent of fetuses with HPE survive delivery, and the vast majority of these infants do not survive past the first six months of their lives. Most that do live longer have minimal mobility and are on feeding tubes.
Kal-El likes to shake his booty, go to school at Pike Central and watch wrestling. He is a big fan of The Rock.”We own every Rock movie there is,” Margie said. “So when The Rock came back to wrestling, we started watching again.”
They went to SummerSlam in Cleveland earlier this month.
“He was on a Make-A-Wish list. His first wish was to meet Luke Bryan, see his trucks and shake his booty,” Margie said.
That one didn’t work out, but the SummerSlam trip was his second wish.
The Holoprosencephaly does hamper him at times. Doctors say he has a constant state of seizure activity in his brain. On cloudy days, he prefers to sleep all day and can have mood swings impacting his friendly and happy demeanor. He has a mild form of cerebral palsy, and he is autistic.
“There’s just all kinds of complications,” Margie said. “He’s one of the few that can walk and talk.”
He’s a great ambassador for Families for HoPE, a nonprofit group formed to support families with HPE children by providing resources and information. The group has an annual conference, a parent-to-parent support program, and bereavement support, and it helps raise awareness for HPE. Only about 900 families from around the world are registered with the organization, which speaks to the limited number of children living with HPE.
Over coffee, Margie shares a folder with images of other children with HPE that she’s met through the annual event hosted by Families for HoPE. “She’s passed away. He’s passed away,” she tells me as we thumb through the images of children much younger than Kal-El.
These children and Kal-El’s journey are why she’s so passionate about raising awareness for HPE. It’s an honor that her son is one of two ambassadors for the organization.
Especially since he is the first child with HPE to be an ambassador.
To support the cause and raise awareness, Margie, Scott and Kal-El are planning an event for September 14 at the Stendal Community Center. The vendor fair will raise money for the Indianapolis-based nonprofit that supports these families.
If you would like to be involved with Kal-El’s Inspiring HoPE for Holoprosencephaly’s first annual vendor fair, contact Margie on Facebook, at 812-686-2013, or at mecouts@gmail.com. You can also donate directly to Families For HoPE at this link https://familiesforhope.org/donate-now/.
Margie has learned a lot from Kal-El. “He’s really taught me to be thankful,” she said. “If he can smile, I can smile.”
In light of the many difficulties he endures daily, Kal-El has an appreciation for the phrase, “shit happens.” And uses it appropriately to the amusement of most in earshot of his matter-of-fact utterance.
He’s helped her faith.
“He prays about everything,” Margie said, adding that it helps him during difficult times, even trips to the dentist which can be especially traumatizing.
Kal-El recently got baptized, but he’s known Jesus for a while. One drive to Jasper a few years ago sticks out to Margie. It speaks to her about how close Kal-El is to Jesus.
While driving, they passed a cemetery in Velpen and he said, “Look, Mom, there’s Jesus.”
“I about ran off the road,” Margie said.
She continued to ask him about each cemetery they passed on the way to Jasper. Was Jesus there? How about there?
“No,” each time.
On the way home, as she passed the Velpen Cemetery, she asked him if Jesus was there.
“Yes.”
She screeched to a halt and turned into the cemetery. “All right, show me,” she told Kal-El, thinking maybe he was talking about his grandfather, who had recently passed away.
As soon as she parked, he ran from the car through the grave markers, laughing. She chased him and asked, what are you doing?
“Playing with Jesus,” Kal-El said.
