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| Tyler's 2011 Celebration of Life Prom Night |
Hi, my name is Cynthia Nevels and I am Tyler's mom.
Over the holidays we decided to open up and share Tyler's story and inform some of our closest to oldest friends and strangers about Tyler's struggle and his will to live. Although the cameras are off and the "story" has passed, Tyler's wait for a liver and lungs continues. He's not the only child or person on the waiting list for organs and I empathize with the families who have waited much longer than we have.
Many times people who meet us are taken by surprise by our use of humor and my "matter-of-fact" discussions about my life, my children and Tyler's condition. For sixteen years only a handful of people were even aware my son was born with Cystic Fibrosis and to be truthful most of them never really understood the disease and it's severity. Often they would ask me how's Tyler and his battle with MS. That makes me chuckle and I'll politely state, "he has CF and he's fine, doing well, or he's happy as ever." Because essentially that's what people want to hear so they can go on their way and deal with their own issues and challenges. I believe that's fair.
I guess today, after talking to a new friend on yesterday, I began to think about where we are as a family, what I or we have had to sacrifice to keep the family "sane, happy, together and alive;" and what will happen if Tyler doesn't receive the organs he needs in time. When the issue isn't yours it is difficult for another person to understand or imagine what this life is like. How challenging the wait can be on a family, how challenging it is to go back to work because the bills won't stop while you wait and how lonely this journey can be for a single mother. We all face adversities, large and small, I've learned it's how you deal with them that counts. So, as I write this blog post to empty my little red wagon of emotions I encourage you to register to be an organ and tissue donor, today.
I'm wondering if other mothers with healthy children would refuse to help Tyler if they met him face-to-face. I wonder why some still refuse to register themselves and their families to be organ donors or to spread the word. Probably because it's not their child but if it were - would you register?
