A Race of a Different Kind

Last night I had the honor of attending a memorial service for one of my most influential teachers. My high school choir and orchestra director, we called him "Mr. A." While at the service, I saw a teacher who was also my brother's track coach. I was a statistician/assistant to the coach for a short time, back in the day. Each one of us is running a race called life. We have hurdles to leap over, some people more than others. I don't remember what his coaching style was like, but I do remember my choir director's style. His teaching style was that of a beloved older brother showing you the way. He had a beautiful professional singing voice, but none of us students ever knew that. To us, he was a friend and mentor. After the service, many of us gathered to share stories of how we each had experienced his jovial, enthusiastic, warm and caring personality. We were invited to gather as a group and sing a song for his wife, a hymn from the Lutheran Hymnal. While stepping forward to sing, I saw a fellow choir member approach the stage, immediately recognizing her wonderful naturally curly hair and precious smile. It was such a joy to see this great friend and fellow Pop Group singer after...how many?...over thirty years. Yes, I used to be able to sing and dance at the same time. Not anymore, but I'm slowly working on it.

She and I began discussing our lives as people do after being separated for decades and discovered something absolutely amazing. We were both intimately acquainted with hydrocephalus. As far as we knew, we were the only two students from our class who attended the service. Amazing odds? You bet! It turns out, her first-born son acquired hydrocephalus within his first year of life. She had no one to turn to for advice and not much money for medical care. The clinic she attended for emergencies apparently had no knowledge of hydrocephalus. A relative who also happened to be a nurse finally saw her son and immediately knew he needed to be seen by an experienced pediatrician. Her relative helped her pay for his care. Thus began her journey at the side of a boy requiring multiple brain surgeries throughout his life. He is a young man now, with a college degree, looking for a job. He successfully completed school, but has been struggling with motivation. Don't we all? She had tears in her eyes as she told me her story. We hugged a lot. During the drive to my modest middle class home I was on the verge of tears, too, but happy tears, tears of joy.

Meetings like this were the reason I began volunteering with the Hydrocephalus Association years ago. The opportunity to be in the right place at the right time to encourage people who were having to constantly explain to others what hydrocephalus is. Who had to fight for assistance with their children's medical care. Who were finding out for the first time that Spina Bifida runs in their family. Who were afraid their child might not make it through high school graduation. My friend made it through all of those things by herself because she is one strong and persistent woman. I became a volunteer so that mothers, fathers and care givers might not have to travel this journey alone. I can't always give them the answers they seek, but I can refer them to professionals who may have the answers. And I can tell them not to give up when the medical community seems cold, like they are only a number. I know from my experience inside the medical community that no one is just a number. Surgeons, doctors, nurses, nurse practitioners and lab staff are all doing the best they can. We need to support them as they support us.

So, this is why I speak openly about my life experiences. I love my high school friend. It was good to see her and remember choir adventures. It was also good to know that my struggles in life may have given her some hope and encouragement. This is why I volunteer for the Hydrocephalus Association!