By Christina Quick
Eighteen-month-old Konnor John William Rose has a knack for banging the keys of his grandmother’s piano, pulling the cat’s tail and getting into mischief — a typical day’s work for a typical toddler.
But life with Konnor is anything but typical. Born with a small portion of his brain missing and an underdeveloped optic nerve, Konnor is legally blind. He also suffers from a form of diabetes and a pituitary dysfunction that interferes with his growth and causes him to appear younger than his actual age.
At a time when most toddlers are busy exploring everything in sight, Konnor — whose intelligence is unaffected by his condition — interacts with his environment through sound and touch. He gleefully plunges both hands into a basin of dried beans, pounds on a wall, feels his way around the edges of a mattress or cocks his head and listens intently to a song.
As the cherubic little boy discovers the world around him, his family members are making some discoveries of their own. Like thousands of others who face the challenges of caring for an ill or disabled child, they are finding that each day can bring a bittersweet mix of joy and anxiety, laughter and tears, concentrated energy and complete exhaustion. As Christians, they are also discovering that they can depend on God’s faithfulness in the midst of uncertainty.
“Nothing comes to us that hasn’t been strained through the loving hands of God,” says Lisa Kilsdonk, Konnor’s grandmother. “Even though our circumstances don’t seem perfect, God’s plan is.”
Konnor was born with a clubfoot, a condition that doctors say is unrelated to his other medical issues. During his first few weeks of life, he was fitted weekly with leg casts and underwent surgery.
Colin and Kassidee Rose prepared themselves for dealing with a leg brace and corrective shoes. But nothing could have prepared them for what came next.
When Konnor was six weeks old, Kassidee took him to the doctor’s office for a routine visit. It was December, and she and Colin were looking forward to celebrating their baby’s first Christmas in their cozy cabin home in Montana. As the doctor examined Konnor, he noticed that his eyes did not seem to react to light. Other medical personnel were called in to check him. After several minutes, they dismissed themselves into the hall and began talking in hushed tones. When the doctor finally reentered the room, he delivered the devastating news: “I don’t think your baby can see very well. He may be blind.”
The new mother was in shock. “I couldn’t believe this was happening to me,” Kassidee says. “Nothing made sense. This was my perfect little boy.”
Too shaken to drive the winding canyon road that led to their home in Big Sky, Kassidee pulled into a nearby gas station and called her husband. She then called Lisa, her mother, in Missouri.
“They think Konnor is blind,” she sobbed into the phone. “What if he never sees my face?”
Lisa comforted her daughter and promised to pray. Only after she hung up the phone did she allow herself to break down and cry for her grandson.
Colin didn’t want to believe the doctor’s assessment. The easygoing auto mechanic struggled with disbelief, anger and a sense of helplessness at not being able to fix the situation.
“I remember thinking, That’s not right, they made a mistake,” Colin says. “I’ve always thought that you do the best you can do and everything will turn out right.”
As the couple waded through their grief, they were sent from specialist to specialist, trying to make sense of what they were facing. After extensive testing, Konnor was diagnosed with optic nerve hypoplasia and septo-optic dysplasia, which means his optic nerve is underdeveloped and he is missing the septum that normally divides the two sides of the brain — a condition that can contribute to a host of physical and developmental problems.
In addition to his blindness, Konnor has developed diabetes insipidus — a hormonal disorder — and pituitary problems. He needs daily injections of hormones in order to grow. (Though his weight was in the 70th percentile at birth, it is now in the fifth.) So far he hasn’t been able to receive the medication because the family’s insurance company has refused to cover the $1,200 per month expense — a common problem for families with serious medical needs. Until the financial issues are resolved, Konnor may continue to fall further behind schedule on the growth charts.
Konnor is already taking medication for diabetes. He is also seen by five therapists for 15 to 18 hours each month and must be examined by specialists four times a year.
He has trouble regulating his sleep patterns and often wakes up at night demanding attention and playtime, a routine that wears on his family.
Because Konnor’s needs were so overwhelming, Kassidee and Colin relocated to Missouri a year ago. The move allowed them to be close to Kassidee’s parents, who took them into their home while the couple waited for their house in Montana to sell. They have been assisting with Konnor’s care ever since.
The couple also found a network of support in the church Kassidee’s parents attend, Nixa Assembly of God.
“The people there showed us nothing but love,” Colin says. “They were willing to put their hands on Konnor and pray for him and us.”
Kassidee, who grew up in an Assemblies of God church, recently rededicated her life to Christ. Colin, a new believer, is learning to trust God for his son’s future.
“He might not drive, he might not play basketball, but I’m happy that I have him,” Colin says. “God gave him to Kassi and me for a reason, and I believe He has a plan for his life.”
Konnor’s grandfather Rod, who is studying to be a minister at the Assemblies of God Theological Seminary in Springfield, hasn’t stopped praying for a miracle.
“I’ve always felt God could heal Konnor and that would be a testimony of His great power,” Rod says. “But even if God doesn’t choose to do that, He will use this for His glory. Konnor won’t see people’s outward appearance. He’s going to look on the inside, which is what God does with us.”
Rod, Lisa and their three younger children, ages 12, 15 and 18, have rallied around Kassidee, Colin and Konnor. They lavish Konnor with attention and take turns caring for him when he awakens at night. Facing every challenge and celebrating every milestone together helps them cope. But including God in the equation allows them to hope.
“This really hurts, but my God can turn the most painful things into something beautiful,” Lisa says. “When you buy a rose bush, it’s just a stick with thorns. This situation looked dead and hopeless, but I felt like that rose bush got planted here with us. I’ve learned a thousand things through this. I’ve learned especially to appreciate the little miracles and gifts of every day.”
As Konnor laughs and claps at having just made a new discovery, it’s easy to see exactly what she means.
Christina Quick is staff writer for Today’s Pentecostal Evangel.
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