Open to life, even with a 25 percent chance of cystic fibrosis
ALASKA, July 25, 2012, (LifeSiteNews.com) – Ken and Allison Howell were leading what they considered a “charmed life.” The newly married couple were part of a Pentecostal church where the “preaching was fiery, the services long and emotional, and the music pulled one from the depths of weeping to the heights of dancing.”
But the Howell’s first child Rees, born in 1994 — four years into their marriage — was about to turn their charmed life inside out, leading them on a difficult journey that would test their marriage, their faith, and the way they valued human life.
Rees entered the world after a storybook pregnancy and birth. But by the time he was nine months old, he had contracted pneumonia twice, a rarity for a child who was breast-fed.
Further testing revealed why. Rees was found to have cystic fibrosis, a genetic disease caused by two recessive genes passed on to him from his parents.
Cystic fibrosis (CF) is a hereditary disorder which causers abnormally thick mucus to be produced, which often leads to serious respiratory infection. Havoc wreaked on the lungs by this disorder is the primary cause of CF-related deaths.
The Howells were devastated by the news, not only because of concern for their son, but also because of their participation in what Allison refers to as the “divine health-and-wealth-teaching church.” It was impressed upon members of that church that “divine healing is an integral part of the Gospel” and that “deliverance from sickness is provided for in the atonement, and is the privilege of all believers.”
“Although we were scared silly, we assumed that there would be some grand miracle for Rees to showcase God’s power,” said Allison who related her story to LifeSiteNews.com.
The Howells brought their son to “prayer warriors and healing services,” desperately clinging to the idea that his “sickness was from the Devil and that our faith in Jesus’ healing power was all that was necessary for his cystic fibrosis to go away.”
But the Howells had been set up for bitter disappointment.
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When Rees’ healing did not occur, the parents were led to believe that something was wrong with their prayers, their faith, their worship, or even with their trust in God. The leaders of the sect convinced the distraught couple they must be harboring a “secret sin” and that they “didn’t love God enough, didn’t love others enough, didn’t sing enough, and didn’t speak in tongues enough.”
For the first time, Ken and Allison began to doubt each other. They began to doubt God.
“The whole thing caused great harm to our marriage, as thoughts crept in of the other one being the hindrance to healing. Our relationships with God crashed.”
Ken and Allison ceased attending church services for a year, trying to sort out the spiritual mess which they found themselves in.
“We were angry with each other, angry with God, angry with our pastors and college professors, and maybe even angry with Rees,” she recounted.
A Turning Point
But the Howells did not want to give up so easily on their Christian roots. They returned to church services, wanting to pass Christian values on to their son.
But troubles in their church’s leadership led the couple to seriously question the matter of authority. What the couple discovered through reading and research led them to the door of the Catholic Church.
“We decided to investigate the Catholic Church’s claim to be the church founded by Jesus Himself. We bought books, lots of them. We rose early to read and spent our evenings reading. We interrupted each other. We shook our heads. We were excited.”
One evening while pouring over some books, Allison remembers turning to Ken and saying: “My God, we’re going to have to become Catholic.”
“We already are in our hearts and minds,” Ken replied.
The Howells were excited to discover the Catholic understanding of suffering as redemptive. They came to recognize that their son’s illness was not a curse from God, but a calling for him and for them to bear fruit by becoming united to the mystery of Jesus’ redemptive Passion.
Along with St. Paul, the parents learned to think of suffering as “complet[ing] what is lacking in Christ’s afflictions for the sake of his body, that is, the Church” (Colossians 1:24).
Ken and Allison desired to grow their family, but they were scared by the knowledge that a child born to them had a 25 percent chance of having CF.
“I remember wanting someone to tell me, when all we had was Rees, that it was OK to have more children,” Allison recounted.
However, as the Howells progressed in their faith journey, they came to realize that each life is a gift. They discovered in themselves a new attitude toward life and became open to having more children, even if that meant children with CF.
They realized that “no one is guaranteed tomorrow” and that health is not all what life is about. They recognized that every life, whether with CF or not, is imbued with a “spiritual component” that is “more real and lasting” than the elusive and ephemeral happy-healthy lifestyle that many people consider to be the reason for existing.
“All life is of value and all life is in God’s Hands, no matter how long or short, how fancy or poor, how sick or healthy,” they came to see.
The couple’s newly discovered openness to life was fruitful. John was born in 1997, followed by Clare in 2001, both without CF. Then came Ian, Ambrose, Luke, and Joseph, all without CF. Adah was born earlier this year and has CF.
All Children are a Gift
Some people think the Howells are irresponsible, or crazy, for being open to conceiving children who might have CF. But Ken and Allison simply smile and tell them that “every single life can have health problems, from the moment of conception and onward through all of life.”
“No one is guaranteed anything in life,” they say. They tell people that CF is manageable and that there are ways to keep CF kids healthy.
They also point out that a child with health problems, like a Tiny Tim, brings out the best in people.
“They have ‘something’ you can’t put your finger on. They tend to be wiser. They charge into life, full-force. They make the world a better place and they want to be here.”
The most important lesson Ken and Allison say they have learned from their CF children is that “all life truly matters.”
They have seen how their own family has blossomed and grown more closer by ordering their family life around the lives of their children with CF.
“We are very close, in part because of the necessary CF care which includes things like ‘lung clapping,’ where one must pat the CF person all over the chest and back to loosen the thick mucus in order for it to be coughed up.”
Up until Rees was 10, the Howells would “hop onto the couch” with Rees to do his lung clapping (pulmonary therapy) for 20 minutes, three times a day.
“When more children came along, they would join us in the activity. Now that we have another baby with CF, the other kids argue over who gets to do ‘lung clapping’ for Adah.”
While Rees now uses a hand-held device for his pulmonary therapy, Allison is convinced that the years of hands-on therapy with her son has “forged an enviable closeness” that she says is now paying off in Rees’ teenage years.
Life is Normal with CF Kids
Rees, now 17, recently graduated high school and is looking forward to beginning college this fall.
Allison says that she cherishes her son’s every accomplishment because she knows the struggle behind what he has done.
When Rees achieved a black belt in marshal arts, Allison could hardly contain from shouting out to the crowd: “Do you people know that he has CF? Do you know that it took him a year longer to accomplish this than it took other kids? Do you know that he has lung troubles and hospitalizations?”
Rees’ recent graduation ceremony for homeschoolers had to be planned around one of his hospitalizations. He was given permission to attend the ceremony only if a nurse accompanied him. “We all met him in the city, he processed, walked, received, ate, visited, and headed back to the hospital. No one knew that under his gown was a taped-up IV tube in his arm.”
Now with little Adah following in the footsteps of her older brother, Allison says that she has the routine down pat.
“The baby needs to swallow tiny pills that I mix with applesauce before each nursing session, and she needs her scheduled ‘lung clapping.’”
The Howell family likes to spend “as much time as possible” hiking and camping in their beautiful Alaska. On their family outings, Ken and Allison make sure to bring everything that their CF children require to take part in the adventure.
“Pills, the flutter valve, and applesauce can easily be tucked into backpacks, and when a nebulizer is needed, we have an electrical converter that uses the cigarette lighter in the vehicle.”
At the end of each day, Ken and Allison rejoice in the lives of all their children. While they love their CF kids “exactly the way they are,” they nonetheless “pray every day for the researchers who are working on a cure.”
“Every child suffers in some way, whether with CF or not,” they say. “All parents can do is hold them, love them, and help them. There is an awesome mystery to life.”
The Howells have come to a simple conclusion: “Life is precious!”