Executive Director, Sue Reel's Story
Our fourth child, Breanna, was born four weeks early on June 15, 1995. Blue as a smurf and not breathing nurses whisked her away to the NICU (Neonatal Intensive Care Unit) for the next two months. Breanna laid there on breathing machines, feeding pumps, pulse-oxygen sensors and more. She had numerous tests and eventually an MRI and CAT scan. These tests revealed what would be the major issue: an agenesis of the corpus callosum*.
The doctor explained that with this type of birth defect Breanna would never walk, never talk, never be able to do much of anything. “You should,” he said “consider institutionalizing her.” No baby books prepare one for this. No one hopes their new baby will have special needs. But here she was and she was mine and I was going to fight for her. Hospital therapists also painted a bleak picture. We were assigned a physical therapist for building her large muscles, an occupational therapist for her fine motor skills and a speech therapist to help Breanna learn to swallow and then talk. I wanted my baby home with the rest of the family. No machines, no sensors, no tubes, no wires – just us. We eventually brought Breanna home but all the machines tubes and wires came with her.
In addition to 24-hour a day Breanna care there were surgeries and therapies. I was also tending to our other three children, maintaining our marriage and keeping ourselves financially afloat. I was exhausted. The only people who understood were other parents of special needs kids. We all think we just need to get out of the hospital and it will be all right. But that is just the beginning of the race. The hospital stay was a warm-up. Breanna is now 22 years old. She has 31 unique disabilities, has had 67 surgeries and over 100 hospital stays. Care, concerns, therapy, medical interventions all continue. Yet she is also a high school graduate, a loving sister, cousin and aunt. She is great at making everyone around here smile.
No parent ever prays to have a special needs child. But when it happens we cope. We learn to be nurses, therapists, teachers and advocates. But I don’t want anyone to have to go through it alone. I want to create a respite center, like The Gathering, Ltd, where children with special needs are safe so parents can relax. Sometimes we just need to sleep through the night without tending to an oxygen monitor or a feeding pump beeping. With that kind of break from time to time we can not only cope but thrive.