Click her to receive blog updates via email

Thursday, June 28, 2012

Stories to be Told: Part 2

A few years ago, a family moved in across the street. I met Dan and Michelle, and their son, Matt, within days. Within months, Michelle and I were friends. When we first met, Michelle briefly mentioned her son, Nick, and said he was "away at school." As our friendship bloomed, I learned that "school" is a residential facility for kids with special needs. See, Nick has tuberous sclerosis, a rare, multi-system disease that causes non-malignant tumors to grow in the brain and other vital organs. When Nick was born, he had 28 tumors in his brain and 5 in his heart. Because of these inoperable tumors, he has seizures, developmental delays, behavioral problems, and is autistic. And he is loved. 

Michelle described to me their journey in deciding to allow Nick to go to the residential school. It had nothing to do with convenience for their family and everything to do with what was in Nick's best interests medically, socially, and developmentally. I asked if she'd like to tell Nick's story and she agreed. So we began. She's described brain surgeries, seizure episodes, behavioral issues, and the strain chronic illness puts on a family. But she's also described weekends at the beach, his passion for music, and how he inspires them with how extraordinary he is. They're an amazing family and I'm honored to write their story for them.

As we continue on this shared road of telling Nick's story--their family's story--I know it will stretch me as both a person and an author. To hear about heart-wrenching brain surgeries and frightening seizure episodes will break my heart and cause me to pause when I begin to complain about my life. I also look forward to how writing this story will help me grow as an author. To write someone else's memoir and be true to their life and purpose and emotions will be difficult. But I welcome the task. Because just as in life, we often must be pushed out of our comfort zone and test who we are and what we can become to discover where we can truly go. Thank you, Michelle, for this journey.

No comments:

Post a Comment