Our daughter Maura was born on Memorial Day Weekend in 1990. She entered the world in the wee hours of Saturday morning, five weeks premature, via emergency C-section, at an unfamiliar small-town hospital where we were transported after my wife experienced vaginal bleeding in the middle of the night while on vacation. After being stabilized, Maura was transported back to Pittsburgh the next day, where she began a 24-day fight for life in a Neonatal Intensive Care Unit. A blood vessel in the umbilical cord had ruptured, causing Maura to lose about 1/3 of her blood supply, resulting in Cerebral Anoxia and an insult to her kidneys, adrenal glands, and other vital systems. Although Maura was the largest and healthiest-looking infant in that NICU, she was also one of the sickest. During those first few hectic days, I was afraid that Maura would die and I was also afraid that she wouldn’t. It was the low point of my life.

Maura won that battle for life eleven years ago. She just completed fourth grade in a partial-inclusion program. She has spastic diplegic cerebral palsy, a seizure disorder, and mild to moderate developmental and intellectual delays. She’s partially ambulatory, but basically a wheelchair user. She can transfer from chair to bed or commode, she’s independent with feeding, she can partially dress herself, and she’s about 95% independent in toileting skills. She’s very verbal, highly opinionated, fights with her 14 year-old brother, and this summer she’s discovered baseball and has become a die-hard Pittsburgh Pirates fan. She’s got a drawer full of Special Olympics medals. She’s got several crushes on several young men. In short, she’s a delight!

These past eleven years have been a series of discoveries for my wife and me as we raised Maura and her brother. Through Maura, I’ve made lots of discoveries about my wife, about doctors and hospitals, about early intervention and special education, but most of all about myself! When Maura was born, I had worked with Visually Impaired Children with additional severe disabilities for 19 years. I thought I knew it all, and when I met with families I suppose I projected an image of someone who was quite confident and self-assured. Maura changed all that, and I know I’m much more patient and understanding with our families because I’ve “walked a mile in their shoes.”

The discovery process hasn’t ended for me, because by 1999, when Maura was nine years old and I was an “expert” again, her seizure disorder emerged and with it a whole new host of fears, angers, frustrations, doctor’s appointments, EEG’s, med trials, etc. Our family was back to square one and learning to cope again. There are still kidney tests to complete, and surgery scheduled in a few weeks to remove hip plates and lengthen hamstring and ankle tendons. That means casts, hospital beds, potty chairs, pain management, and some long nights.

I’ve discovered so much about Korene, my wife of 24 years. She’s been a great source of support for Maura and me through these years. She’s Maura’s mainstay, her primary supporter and caregiver, and she’s the one who takes a pro-active stance in arranging for physical therapy, doctor’s appointments, AFO fittings, educational concerns, and a million other issues. If you’re a dad out there reading this, go home tonight and thank your wife for all her help - it’s so easy to take your wife’s role for granted - I did it for years until Maura helped me make this discovery.

Through Maura, we’ve met so many fine professionals: orthopedic doctors, neurologists, physical and occupational therapists, family resource managers, and educators. They’ve shared their time and expertise with us, shared painful moments, helped us cope with disappointments and fears, and celebrated victories. Many of them have become good friends.

I’ve saved the best discovery `til last, and that’s the Washington State Fathers Network. In the spring of 2000, after reading Donald Meyer’s book, Uncommon Fathers, I thought it might be nice to have a father support group here at Western Pennsylvania School for Blind Children. I contacted Don, who immediately put me in touch with James May who invited me to the WSFN Conference in Seattle in June. It was a moving, enlightening experience to be among all those dads! I listened to your stories and I flew back to Pittsburgh convinced that a Father’s group would catch on here. And it has! Our meetings have been very well attended; I’ve worked with the dads of our youngest kids in our Toddler Program. We’re attending a baseball game this summer, and we’re planning more activities for the coming school year. It was such a pleasure to return to Seattle in 2001 to see everyone again and to report on our progress.

Lately I’ve been thinking about my old dinosaur of a cell phone that I’ve had for years. It’s so big my son nags me about getting one that’s more modern. The battery doesn’t hold a charge for very long, either. I hadn’t realized how low my personal batteries were, but when I flew back to Pittsburgh from Seattle after those two conferences; they were fully charged for another year! Thanks to all of you at the WSFN for doing that for me! Your courage, your spirit, your enthusiasm, your support, and your love have made some positive changes all the way across the country, in Western Pennsylvania. I hope to be with you for many Junes to come, if not in body, certainly in spirit!

Bill Kegg coordinates transition planning for visually impaired youngsters at Western Pennsylvania School for Blind Children in Pittsburgh. He lives in Pittsburgh with his wife Korene, son Billy, age 17, and Maura, age 14. Bill is an avid coin collector and enjoys Western Pennsylvania history. Bill always enjoys hearing from other dads! E-mail him at: keggb@wpsbc.org