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?
4 comments:
HI Dobie, first of all I want to say I think it's really awesome that you were able to help out with Crystal's fundraiser. I think it's awesome that you had the time to come out and give this very deserving family a hand. I am writing because, while I understand from the outside how 'horrific' having a child with CHARGE syndrome must be, I wanted to share with you that it's not all suffering and horror. I think I could write a book about the joy that our daughter Kennedy has brought into our lives. Sure things were tough when she underwent 20 surgeries, etc. but her life is so much more than her diagnosis. She is a vibrant, happy, outgoing, bundle of love to everyone who meets her. I could write more but pictures & videos speak volumes so I would sincerely invite you to visit her blog http://chargesyndrome.blogspot.ca/ and look through the pictures of her busy life, watch some videos of her with her sign language club performing, doing speeches, monologues with her performing arts class, etc. I was a friend of Crystal's - through having a child with CHARGE, we met online and then in person at several conferences - I'm sure she would tell you how much joy our children bring to our lives and how much joy it was to connect with so many people from all over the world who yes, go through difficult times, but also happy, joyous, celebratory times. PS - your line about how spectacular Crystal was couldn't be more true...she will be missed by many, many people...
Hi Dobie, I too am glad that you had the opportunity to attend Crystal's fundraiser. I didn't have the chance to get to know Crystal but I have no doubt she was an amazing person. I am also a mother of a child with CHARGE Syndrome. We have had our share of rough days, but his diagnosis and life have not been a nightmare. He is pretty much a typical boy who loves antogonizing his siblings, playing on the computer, swimming, video games, Harry Potter and Star Wars. I would encourage you to read more about CHARGE Syndrome at www.chargesyndrome.org. CHARGE Syndrome is varied among the population of those diagnosed, but their diagnosis doesn't define them. My kiddo is proud of who he is and all of the adults I have meet personally are proud of who they are.
In response to your last question, at the end of your post. God is with our family everyday. We live in a fallen world and are subject to a life altered by sin. I chose to believe that God didn't cause my child to have a disablitiy anymore than my other child has ADHD or our baby was born permaturely. I believe he equips our family to respond to the obstacles that we all face. Many Blessings
Molly Roberts
I want to telk you like the others have said charge is not tragic none of the charge kiddos suffer i have charge syndrome. I i am niether severely disabled or suffer. I know crystals fam well thru online since eva was a baby yes it is tragic se got cancer but even on her worst days she took eva to appts did partys or even a photo shoot she didnt let there problems stopthem and that is same for lots of other charge families also alex crohnes is mannaged by meds he doesnt suffer he so just be aware charge is not that bad niether is crohnes and why this hadvto happen we dont know but crystal was def amazing and so loving and caring
Thank you for your responses. Continued blessings to Crystal's family and extended network of friends.
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