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Someday

Last October in 2016, Caroline was diagnosed with type 1 juvenile diabetes, a diagnosis that sends most parents into fear and confusion, for good reason. But Mike and Jodi aren’t most parents, of course. “We were being offered counseling for managing this new piece” of her complicated care, Mike recalls, “It’s not funny but we both said, ‘Nah, we’re all right with this.’” They laugh about the fact that juvenile diabetes was not going to drag them or Caroline down. They were just going to throw a few more shots, medications, devices, special diets, high and low blood sugar levels “on top of this mix we have now. We’ve gotten used to it this past year and can eyeball her to know what’s going on, if her sugar levels are up or down,” Mike says.

After surgery to control her spine’s scoliosis, Caroline and Mike were in the recovery room listening to a nurse recite risk factors following the type of procedure she had just undergone. Caroline was awake and listening to the news that possible paralysis could result. Mike reached under the cover to pull up her limp arm and let it drop dramatically for the nurse to see. “She can’t move her arm,” he said. “Oh my God,” the nurse responded with concern … for just a second. “Then I laughed, she laughed and so did Caroline.”

Both sisters have become hooked on watching reruns of TV’s Cheers. “I found it on Netflix and they love it,” Mike says. On Sundays, Mike, Jodi, Jillian and Caroline can often be found at Sandy’s Beef and Ale House not far from their home in Yardley. “It’s a little dive that has been around forever with all the locals. Everybody waves and yells when we come in. Caroline is just like Norm from Cheers. I ask her, ‘Is this place your Cheers?’ She always says, ‘Yes. Yes.’”

Her motorized wheelchair can become a getaway car on occasion! “She loves to drive around the neighborhood and run the nurse ragged trying to keep up with her,” Mike laughs. “I’ll jump on my skateboard to go looking and find them almost out on the highway where she is doing her best to control her own adventure.” A big wheeled beach chair customized by her Papa Lou to hold her equipment got her right into the Jersey shore sand and a converted shower chair – with added frame and makeshift wheels – put her into the swimming pool at the Newtown Athletic Club. But the wheels that will make all the difference right now are the ones that come on a new wheel-chair accessible, handicapped-ready van, the kind of vehicle that makes life possible for Caroline. “Our old one has broken down so often,” Mike reports. “We really need a new one. We just can’t afford to break down on the road with Caroline anymore.”

If you’ve been following Caroline, you have seen her award-winning, gallery-level art online or maybe in person. Her pieces would be stunning by any measure but using only a head-pointer and no hands, they simply take your breath away. “Miss Lia, her teacher, treats her like an equal and understands that even as a non-verbal teenager, she is still so normal,” Jodi explains. “Caroline will roll her eyes and Lia gets her. Last week, she showed her a Monet painting of Water Lilies and had Caroline pick out and actually mix the colors she saw. Lia challenges her.” As Mike and Jodi look ahead to what’s in store for this teenager’s life, they see where her passion lies. “Art! This is what she likes best so she’s going to major in art.” {module_contentholder name="Artwork"}

There is nothing like a little sister to make you feel silly, normal, goofy: exactly what Caroline needs. At 12, “Jilly loves Caroline so much,” Jodi says. With hugs, kisses, and an attention to hands-on medical care details way beyond her years, Jillian has become a key to her sister’s care. “She knows exactly what to do when Caroline’s ventilator starts beeping,” Mike says. “She’s our mini-nurse on road trips. I remember when a new nurse was taking too long to put on gloves and suction Caroline. The alarm was going off. Jilly got irritated that she was too slow so she pushed the nurse aside, grabbed the equipment and started the suctioning” that keeps her sister alive. “She can even hear the beeping at night and keeps track of the time it take for the nurse to get to Caroline,” Jodi says. Pure love.

Caroline loves going to sleep-away camp in the summer. Yes, sleep-away! “That week in June at the PA Vent Camp is the only time she ever spends the night away from one or another family member,” Mike admits. A very special, loving experience for children who require ventilators to breathe, this camp lets Caroline zip-line through treetops, run a road-race (with a little help from a volunteer!), make friends for life like counselor Mary Kate, and even dance with guys like Tony, a respiratory therapist in training. After all, she is 15 and this is what teenagers love.