Our ownRecently I've had the opportunity to meet some really amazing people, to read some really inspiring books, and to gain some very important perspective on life as I know it.
First of all, I got to meet Scott Guzzo. Scott is a 26-year-old young man who was born with Crane-Heiss syndrome. Being one of only 2 living people with this particular craniofacial condition, I'm sure you can understand just how special it was to meet him in person. To talk to him. Listen to him converse with us (although mostly I needed to defer to his parents to "interpret" what he was saying). Scott has multiple disabilities that keep him confined to a wheelchair and require feeding through a G-tube. But, at the same time, Scott is vivacious. He is capable. He is intelligent.
My friend Audrey and I spent an afternoon with Scott and his parents at their home. Over a lunch of homemade chicken salad and crunchy potato chips I was able to see first hand that life as I know it may be changed or may be "off course" from the life that had envisioned, but it certainly is no less amazing.
Paula, Scott's mom, is a parent advocate, an outspoken individual and a member on Children's Craniofacial Association's board. She is going to be the keynote speaker at Little Fire Big Heart and I am so looking forward to having her share her perspective with our audience. As craniofacial conditions go, I am, in fact, the rookie, she is the expert.
I've also recently completed two books (gasp! time to read? I know, right) that have offered very different views on grief, loss, and survival.
Josie's Story by Sorrel King is about a little girl who lost her life at the hands of the very capable, very respected staff at Johns Hopkins Hospital due to a medical error. A lethal dose of methadone was delivered during Josie's recovery from a bathtub accident at home. Sorrel tells this heartwrenching story about the loss of her daughter - unselfishly including insight into her darkest moments of guilt and "should-have-dones" - then transforms the piece and shines light on the good that ultimately happens as a result of the tragedy. She becomes an advocate, working tirelessly to support and invent ways to improve education in the medical field about the importance of parent/doctor communication and preventing medical errors.
The other book was called The Middle Place by Kelly Corrigan. It is a memoir written about the author's experience being diagnosed with (and surviving) breast cancer. She has a very poignant voice and as foreign as the world of cancer is to me it still resonated with me in so many ways. The shock of finding a lump paralelled the shock of learning about Aiden's diagnosis. The feelings of isolation. The resistance to accept, move forward, educate and fight. And then, the desire to do just that.
If there is one thing I've come to understand over the past few months, it is that unfortunately, everyone has their own battles they are fighting. Scott will never know a life of being able to run a race or savor a sliver of steak. Sorrel King will constantly grieve the loss of a child. She will think about the moments they should have shared. Kelly Corrigan will wonder why her body failed her. Fear the day that the cancer will creep back in and threaten her very existence.
I may not ever know their pains. I may not ever fully comprehend the journeys they have lived. Yet, at the same time, I feel a connection with each and every one of them.
The details, the story, the unique responsibility of raising a child with Apert Syndrome, the dealing, the surviving - that is our own. But the feelings of the heart, those are one in the same.