Alisha and Nicky and their two children, Kylee, 5, and Eli, 8 months, have returned to Fulton, their homecoming celebrated with a police escort. It was a grand finale to a long, nerve-wracking chapter of their lives; something like an ending.
The rhythmic thumping of the ventilator in the background of their living room, however, is a reminder that their story is far from over.
“This is pretty much it,” Alisha said, motioning behind her to the small crib tucked in the back of the living room. Eli was sleeping peacefully, the ventilator’s breathing in time with his own.
She gave a worn but earnest smile and said, “Because they don’t know what’s wrong with him and don’t have anyone to compare him to, they really don’t know what our future holds.”
Although noncommittal shrugs and vague answers aren’t exactly what the Kents were seeking when they first hospitalized Eli on Feb. 12 with breathing problems, they’ve come to be at peace with them, accepting the struggles their son’s mysterious illness entails as just another part of life.
“There’s no name for what he has; everything is unknown,” Alisha said. “We know it’s a genetic neuropathy but of unknown origins. There’s no one in the world to compare him to.”
Alisha said during the past six months, her family’s been to three hospitals in an equal number of states seeking answers as to why her son can’t breathe. The child’s endured seemingly every test known to man, most of which came back either normal or inconclusive.
During the search for answers, the Kents were living in a Ronald McDonald House. Prior to that, they were staying inside Le Bonheur Children’s Hospital in Memphis. Weeks would pass with no answers, adding to the family’s mounting frustrations.
“It feels like you’re being run against a brick wall; you’re getting nowhere,” Alisha said.
Her husband likened it to being stuck in the mud, tires spinning uselessly.
“They checked anything and everything they could think of,” Alisha said of the neverending string of tests.
In the end, doctors at the St. Louis Children’s Hospital determined both sides of his diaphragm are paralyzed, requiring him to use tracheal intubation to breathe.
According to his mother, no one knows when or if he will ever breathe independently.
“We don’t know what the future holds at all; we have no clear path to where we’re going,” she said. “Maybe he can train himself to breathe; maybe he’s just too small right now.”
Back home
“Let me tell you, there’s no place like Itawamba County, Mississippi,” Nicky said, stretching out on the couch and slowly revealing a smile. “There’s no comparison to the people here.”
His wife agreed.
“The support for our family has been phenomenal,” she said.
The Kents arrived home July 13, exhausted and weary and ready to continue with some semblance of a normal life. They were met by family and friends, all of whom had been more supportive than the couple could explain.
“It just makes you speechless; I can’t even begin to sum up everything that people have done,” she said.
Her husband took a stab at it, rattling off a list of goodwill and fundraisers, including softball games, auctions, womanless beauty reviews, a massive Facebook movement, a caring bridge and more prayers than he could count.
Seemingly the whole of Itawamba County was watching out for Eli’s health.
“I can’t say enough good things about Itawamba County,” Nicky said, leaning forward.
Alisha added, “Itawamba County helped get us back here. If he could, Eli would say he surely appreciates all the help he’s been getting.”
The future
With the exception of his breathing, Eli is a relatively healthy little baby. He’s underdeveloped, possibly due to months of hospitalization; but, he’s still playful when he’s happy, fussy when he’s not, just like every other baby in the world.
“You know, he’s really not that difficult to take care of,” she said. “We’ve been at this for so long now, that he’s no different to us than a perfectly normal baby. It’s just our lifestyle, now.”
Eli just recently took his first bottle, she said, beaming.
When asked how they felt about their entire experience, the couple claimed contentment. Alisha said they’d taken the whole thing in stride, the same as with any other challenge.
“We have a healthy child; we have an unhealthy child,” she said, holding up both hands like a scale. “We know Kylee’s healthy now, but anything can happen; Eli’s unhealthy now, but anything can happen to him, too. They’re pretty much the same.”
Alisha said she’s resigned to leave the future to God and to concern herself with the present. If Eli gets better, wonderful; if not, she said the family would learn to accept that, too.
“If God wants him, he can take him,” Nicky said. “Until then, he stays with us, and we’re not going to ever give up on him.”
“We’re not even promised this next second, and that’s kind of what we’re basing our lives around right now,” Alisha said. “We’re not going to worry about the future ” about next week or tomorrow or an hour from now. We’re worried about this moment; this moment only.”
Eventually, as the conversation wound on, the breathing of the ventilator faded into background’s din, and all that was left was the sound of family ” exhausted, happy, home at last.
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