Crystal Cloudy

Sunday July 29th, 2012 – Oak Creek, WI

   Some days life gets put into frightening perspective. This is one of those days. I volunteered to act as host and emcee of a benefit fundraiser for the family of a woman named Crystal Masionis, a friend of my friend Shelley’s who recently passed away at age 35 from malignant melanoma.

That alone is unbelievably sad, but it gets much worse. Crystal and her husband are the parents of three children ages 16, 9 and 7. Their 7 year old daughter named Eva was born with CHARGE syndrome, a rare genetic disorder with so many ugly permutations I don’t want to mention them.

I had never even heard of CHARGE syndrome before today’s fundraiser, and I’m embarrassed and ashamed. It severely disables those who have it, and is devastating to everyone around those who have it. I can’t imagine the extreme horror this family has been through, and to make it even worse if that’s possible their oldest child suffers from Crohn’s Disease. My problems don’t exist.

Shelley announced the fundraiser on the air on The Mothership Connection several weeks ago, and I volunteered to do whatever I could at that time. I know it’s not much, and I know I have no drawing power to contribute, but I felt the least I could do was offer my services out of respect to a family that has been through hell and back and continues to deal with nightmare circumstances.

This wasn’t about me, and I showed up in Oak Creek, WI at the American Legion Hall by 2pm to offer my services however they were needed. I met Crystal’s father, who thanked me for being there. I didn’t know what to say other than I was very sorry to learn about the family’s situation.

It was very uncomfortable all around, but again none of this was about me. As a human being I felt it was the right thing to do to pitch in and help. Unfortunately, there was really no reason for me to be there. There was a DJ and a band, and a very healthy turnout of people who showed up to support the cause. That’s the important thing, and I was glad to stay off to the side and watch.

I’m not angry I had to give up my Sunday afternoon and drive an hour to Wisconsin. If that is my worst problem of the day, week or month – how low pressure and easy is my life? I’m angry things like this have to happen to such nice people. What did they do to deserve this hell? Zilch.

There were all kinds of sweet people in attendance, and I tried to be friendly and say hello to as many as I could. There were other families in attendance with children who also were CHARGE syndrome sufferers, and I had to fight back tears as I thought about how horrific that all must be.

By all accounts, Crystal was one spectacular young lady. She was active in leading fundraisers for other families in need, even though her own world was in serious turmoil. I never got to meet her in person, but if I can leave a legacy half as dynamic as hers my life will have been a success.

My heart goes out to the Crystals of the world and their families. Life is hard enough without a nightmare like that to deal with. I feel totally helpless, and sad beyond words. I can’t understand why life has to be so cruel, but it surely can be. If God does indeed exist, why does this happen?


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