by Lillian Csernica on April 30, 2013
My seventeen year old son Michael was a micro-premie, born at 23 weeks. Due to severe complications, he has cerebral palsy, seizure disorder, a Baclofen pump, Harrington rods in his spine, and he is confined to either his wheelchair or the hospital bed in his room. John, who is fourteen, has the diagnoses of speech delay and autism. I mention Michael because I want to show you the context in which my family lives. Our motto is “Never a dull moment.” Every day is a new day, with its own challenges and its own rewards.
I’d been living in crisis mode with Michael for two years when John came along. Three years later, after John’s speech therapist recommended neurological evaluation, we learned that John is on the spectrum. I’ll be honest with you. I was heartbroken. I love Michael dearly, but I was hoping that with John we’d have a healthy, normal child. John’s diagnoses meant more support through the IEP process. They also meant even more battles with the insurance company over appointments with specialists.
Today John reads to Michael, sings the lyrics to his favorite songs, recites dialogue from his favorite movies, and talks to me about genies and superheroes and how he wants to go to Tokyo and Las Vegas (places I’ve been on business trips). John learned to draw by watching “Blue’s Clues” and “VeggieTales.” Last summer, John appeared onstage in a production of “Peter Pan.” It was a theatrical summer camp, with four different casts. John played both a pirate and an Indian. John’s teachers, therapists, aides, Grandma, Aunt, and of course my husband and I came to see him. We made sure he had somebody in the audience for every performance. When it came time for the curtain call on the final performance, I made sure John had a bouquet of flowers just like the stars of the show had received.
John is my joy. He’s smart, funny, creative, stubborn and every inch a teenager now. I thank God and all the professionals along the way who have contributed to John’s growth and development. What had broken my heart has now reassembled the pieces into a better, stronger pattern, giving me hope and courage for both my boys.