Madison’s story
It all started 25 years ago…
When our oldest daughter Madison was almost six months old, she contracted bacterial meningitis. Within the course of a few hours, she went from being a fussy baby with her first ear infection to fighting for her life on a ventilator at Vanderbilt University Children's Hospital. Over the next days and weeks, the amazing team there worked tirelessly to save her life.
During her illness she had significant seizure activity, extremely high temperatures, and much swelling around her brain. Because of these issues and the trauma to her system, we left the hospital with more questions than answers.
Over the next months and years, the true impact of the meningitis revealed itself. The gap between her development and that of her “typical” peers continued to widen. Quickly. The seizures that began with the meningitis continued and were often far worse than those from her infancy. The official diagnosis of intellectually and developmentally delayed came and it hung like an albatross around her neck.
By the time she reached high school, she was again having life threatening seizures that caused her to neurologically flatline. We tried all medical and prescription medicine options. She had a vagal nerve stimulator implanted and we continued to make the rounds of all the neurologists in the region looking for a magical solution. As with most significant medical challenges, there was no magic solution.
Just a surgical option.
The surgery recommended by both her neurologist and neurosurgeon, was a “corpus callosotomy” – the surgical separation of the two halves of her brain. The hope was that this would stop the catastrophic seizure activity.
And so, a few weeks after her high school graduation she underwent a nine hour surgery at Vanderbilt. While successful in stopping the catastrophic seizures, the impact to her brain and nervous system was so profound that she would, at age 19, spend the next months and years relearning everything (EVERYTHING) again. Just as she did after the meningitis as an infant.
Walking
Talking.
Sitting up.
Feeding herself.
Reading
Writing.
Everything.
But just as she has done her whole life, she did not let this challenge slow her down. She pushed and she worked, and she smiled, and she regained every bit of strength and stamina and smarts that she had before the surgery.
Madison is a treasure. She is a beautiful 25 year old woman who “functions” as a four or five year old. She carries with her the remnants of a brutal childhood illness – traumatic brain injury, cerebral palsy, a (controlled) seizure disorder, and a raft of other challenges. There is no way to sugar coat it, she is limited in many ways. (“Permanently disabled” is how the blue hang tag in our car puts it.) Many of the benchmarks that we all believe to be part of a full life will never be part of her full life. She will never drive a car or live independently or manage the typical day to day activities that we all consider necessary for a full life.
But she will and does live a more than full life in the way that she impacts her family, her community, and the world in many more important ways.
She teaches us tenacity by staring down her seizures and pushing through.
She teaches us the value of joy in her outrageous belly laughs and silly smiles.
She teaches us courage by not ever saying one time “that’s not fair” about any part of her life.
And most importantly, she teaches us how to love endlessly and unconditionally, every minute, every day, with every ounce of our being.
