Charlie leaned in close to the book in Mommy’s hands.
“I love you stronger than the wind. ... I love you closer than my shadow. ...”
Charlie, who turns 2 on Tuesday, tapped his hands on the book, “All The Ways I Love You,” and broke into a smile that dwarfed his pacifier. It was Daddy’s voice, and Charlie knew it.
“This is one of his favorites,” Kristin Dolan said, holding Charlie, who has been diagnosed with a rare eye disorder and glaucoma. “John recorded it before he went TDY. It’s one of the ways we keep in touch. We Skype, so we can see him and he can see us.”
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Daddy is U.S. Air Force Capt. John Dolan, a civil engineer with the 407th Air Expeditionary Group. He is currently deployed to “an undisclosed location in Southwest Asia.” But he does everything he can to support Charlie and Kristin while he is away from their home at Scott Air Force Base.
He will be running in the Delta Gamma Run for Sight 5K on May 3, the same day more than a thousand others will be running to raise funds for the Delta Gamma Center for Children with Visual Impairments in St. Louis. “I will still be participating on the same day, only 6,000-plus miles away,” John said in a written statement. “I may not be in St. Louis, but I can still be there in spirit. I want to do my part to let Charlie, other kids and their families know that I and many other people are there to love and support them ... no matter the distance.”
Shortly after Charlie was born on April 28, 2013, Kristin and John noticed his eyes were a little cloudy, but doctors and nurses didn’t seem concerned.
“On May 3, Charlie’s fifth day of life, our lives changed,” Kristin said. “The pediatric ophthalmologist took one look at little Charlie’s eyes and diagnosed him within two minutes as having Peters Anomaly (a genetic defect that causes blurred vision and affects about 1 in 100,000 people).” They also discovered he had glaucoma.”
Kristin stopped Charlie, who was playing in the living room, to put drops in his eyes. No big deal to Charlie.
“He’s been getting eyedrops since he was four days old, so he’s used to it,” Kristin said. “Charlie was taking oral medicine and eye drops on an hourly basis. We had to make an Excel spreadsheet to track all of the different medications and ensure he was getting all of the right doses and frequencies.”
Glaucoma caused Charlie’s left cornea to rupture and he had an emergency cornea transplant at 19 days old. Then came glaucoma shunt surgery at 4 weeks old.
“These two successful surgeries brought a welcome sense of normalcy to our lives,” Kristen said. The hourly eyedrop routine and weekly doctor visits continued. Things were going well until they moved from Hawaii to Scott Air Force Base when Charlie was 3 months old. Charlie’s eyes began to reject the cornea transplant.
He had his second cornea transplant at St. Louis Children’s Hospital at 6 months old. That cornea is still clear, with no sign of rejection. He has gone from taking eight medicines hourly to only five eyedrops four times a day, the doctor visits have decreased and he is showing no developmental delays.
“He’s small for his age,” Kristin said. “But I think all of his calories have been going toward healing and not growing.”
“Charlie is a really amazing kid,” John said. “He’s tough, resilient and, most importantly, happy. We don’t know what he can see (Doctors estimate he has 20/200 vision.) because he can’t talk in complete sentences. But you’d never know he has a visual impairment from the way he acts.”
On a recent afternoon, Charlie stood with his face less than a foot from their large-screen TV, intently watching Mickey Mouse cartoons.
“Mickey is his favorite,” Kristin said. “He can see them, but has to get real close. Oh, look, he’s dancing,” she said as Charlie raised his tiny right foot and shook it to the music.”
While Charlie played with toys, Kristin, 26, talked about how she and John, 27, became Team Charlie.
John and Kristin went to the same high school in Hudson, Wis. “We knew each other from choir and we were in musicals together,” Kristin said. But they never dated. John explained why in an email.
“She had it all — friendly, pretty, caring, funny, had the same interests, musical, intelligent. I had thought about asking her out during my senior year, but I thought she was out of my league.”
Kristin had the same “out of my league” thoughts about John.
“John was a football player, good at sports, so handsome and really, really smart. I never thought we’d wind up together.”
How did John finally work up the courage to ask her out?
“The risk of rejection was really low because I was out of state. I just had a really strong feeling one day that I should go for it and see what happens. It started with just emails, facebook messages and an occasional phone call.”
When they were home for Thanksgiving break, John made his move. “He asked me to go swing dancing.” Kristin said. “We had a great time and never looked back.” They will celebrate their fifth wedding anniversary in June. And dealing with Charlie’s eye problems has brought them even closer.
“It’s stressful being new parents, and with this on top of it, it’s been very stressful,” Kristin said. “We jumped right into it. We decided to do whatever it took for Charlie to have a good life.”
John agreed. “Eyedrops, eye exams under anesthesia, eye doctor visits and surgeries have been a constant in our lives. It’s normal for us. There was definitely a day or two during our first week as parents that were tough because we didn’t know if he’d ever be able to see. Something, blurry lines or anything at all. But we tried our best and focused on doing everything in our power to give Charlie the best chance to see. That’s all could do: Do our best, rely on the doctors’ opinions and expertise — and pray.”
Once a week, Charlie gets a home visit from Becky Lambert, a teacher of the visually impaired from the Delta Gamma Center in St. Louis.
Becky, 45, of Vandalia, travels 70-plus miles a day to visit kids under 3 years old with vision problems within a 50 mile-radius of the Delta Gamma Center. She has 20 to 30 kids on her list at any given time.
“I help them develop skills that every child should know,” Becky said, “mostly through playing with them. I like to bring in new things, like ring stackers, puzzles, building blocks. I try to teach each child to be as independent as possible, like how to turn on a switch or slide down a slide. I set up with parents things they can work on between visits.
“I will have the kids pull objects out of a box and put them back in. We sing ‘Itsy Bitsy Spider’ and I have them pull out a spider. We push our hands away when we ‘wash the spider out.’”
She teaches parents games they can play with their kids, how to form routines (“routines are very important for the visually impaired,” she said) and how to prepare for doctor’s appointments.
“Charlie’s parents are really involved in his development,” said Becky, who has been teaching through Delta Gamma for 20 years. “Charlie is a very independent little guy. He likes to be in control. He loves books and likes to pick out his own books and toys.”
“Delta Gamma has been a big help,” John said. “They’ve not only provided an excellent vision therapist but, more importantly, they’ve connected us to a support system of families we can talk to about struggles they may have, tricks of the trade for having Charlie keep his glasses on, good light toys to buy.”
That’s why John is intent on collecting pledges and running in the Run for Sight. As of Sunday, John had $850 in pledges and he has 20 other people signed up to run “over there.” He expects 40 to 50 turn out on race day.
Charlie being Charlie
Charlie doesn’t mind wearing his thick glasses, but he doesn’t wear them all the time.
Kristin sat on the floor with Charlie and let him choose a toy to show some of his skills. Charlie chose the fishing game. The board was filled with small sea creatures that he could pick up using a little rod with a string attached and a magnet for a hook.
“Charlie, can you catch the octopus?”
Charlie put the magnet right on the turtle’s metal button, and pulled it off the board. He did the same for the shark and the turtle. Mommy clapped.
Enough of that. Charlie jumped up and ran to the front door.
“He wants to go outside all the time. He loves being outside,” Kristin said.
But first he had to find his shoes in the closet, and put on his sunglasses and a hat to shade his eyes.
“He’s very sensitive to light.”
Charlie toddled into the backyard and took a few turns down his plastic slide, with an assist from Mom.
“He’s learning so fast,” Kristin said. “He knows some sign language. He can sign please, thank you, apple, ball, book, all done and more. We learned basic signs because we thought it would be good for him.”
Charlie talks, but it’s usually just the first sound, like “buh” for blue. And he likes to wave bye-bye.
Next up: John will run the 5K on Sunday, 6,000 miles away. Kristin and Charlie will keep things going on the homefront.
John thinks Kristin is amazing — “and tougher than most people realize. She knew what we were getting into when she married an Air Force officer, but that doesn’t make (raising Charlie) any easier. She hasn’t only made it through, but she has thrived through the diversity. In our almost five years in the AF, we’ve moved three times, lived in three states, this is my second deployment, I’ll be missing my third of five wedding anniversaries. ... I couldn’t ask any more from her and I couldn’t do my job with the Air Force with anything less.”
John can’t wait to get home to his family.
“The thing I most look forward to doing with Charlie is to take vacation and just be home. To do it all — play, read books, watch Mickey Mouse, eat dinner as a family, run around outside, go sliding at the park, chase around the house or stand in the driveway and wave at cars as they go by.”
Oh, and there is another little Dolan on the way in September.
“I can’t wait to see how Charlie acts with a little baby,” Kristin said. “He likes babies.”
How you can help
Run for Sight: To participate in the Run for Sight 5K run, 2-mile walk or kids fun run on May 3 in downtown St. Louis in support of Delta Gamma Center, or to donate, go to www.dgckids.org or call 314-776-1300.
To make a pledge to Team Charlie: go to raceroster.com/events/2015/4580/23rd-annual-run-for-sight/pledge/team?id=17
About Delta Gamma Center: In 1951, a group of Delta Gamma alumni from Washington University started a local organization to serve the needs of young pre-school children with visual impairments and blindness and provide training for their parents. Services include comprehensive early intervention services, education, orientation and mobility services, occupational therapy, physical therapy and speech therapy services. It provides home visits by vision therapists within a 50-mile radius of the center and family support connections.
Location: 1750 S. Big Bend Blvd., St. Louis.
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MAGIC TRIP TO CHINA: Valmeyer fourth-graders go to the Magic House.
WEST BELLEVILLE ON THE MOVE: Come along on a tour of the old town.
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PATRICK KUHL COLUMN. Don’t make me eat that!