A BIKER FOR BECCA

It has been over a year since this wonderful little girl came into my life. In October of 2004, I was involved in a fund-raiser for the family of Rebecca Carnes. Rebecca has Spinal Bifida and Hydrocephalus. She has also been diagnosed with Chronic Intestinal Pseudo Obstruction.

Spinal Bifida is when the spine doesn't close during the first four weeks of gestation and Hydrocephalus is also called "water on the brain." Rebecca has a VP shunt in her ventricles in her brain that drains the fluid off; her spine was closed at birth.

Living with this illness presents many challenges, including full or partial paralysis, bladder and bowel control difficulties, learning disabilities, depression, latex allergy, social and sexual issues. The doctors told her parents that she would never walk... but she does with the aid of leg braces.

Rebecca's system doesn't move food through her body. She has been living by Total Parental Nutrition (TPN) or IV food for the past two years. The down side of IV food is that it is destroying her liver and she has had several serious infections. She doesn't eat like everyone else because the food makes her sick.

She also has a neurogenic bladder, one that doesn't work properly. A regimen of poking and prodding with many sleepless nights, still commands a smile on her sweet face.

To the heart of this story:

We held a bike show in the mall on that day. We had attached buckets to our motorcycles and folks would walk by and drop money in the bucket of the motorcycle that they liked best. I was standing by my bike hoping to get a glance of this child that we were doing this for. All of a sudden, there she was, this beautiful freckled face little girl. I don't have to tell you; I melted like hot butter! I bent down to talk to her and she looked up at me and said with a smile; "I like your bike the best!" If that wasn't enough to melt me down, then she asked if I would take her for her first motorcycle ride. What can I say; I crumpled up like an old newspaper! I was hooked, she had stolen my heart!

My enthusiasm for Rebecca began when a chapter in my life should have closed. My wife and I lost our youngest daughter in 1992. She had the most severe form of cerebral palsy. She took her daily nap as usual, only this time she did not wake up. Her sister went into her room to wake her and she was dead; we think she suffocated. She was 11 years old. This was the worst day in our lives. What made it even more difficult is that her mother and I were divorced and she was in Pittsburgh, Pennsylvania, living with her mother. I had been up to visit that Christmas and was loading my suitcases in my car to go spend part of the summer with them. It was July 31st; I was going to leave later that night, when I received the call. My Erin was gone. It had been such a fun Christmas; never thought it was our last together. Until I met Rebecca, I did not let myself get close to any other child with special needs or disabilities, I just could not cope. People say, "Get over it", "Go on with your life" etc. I have gone on with my life, but I can't just forget my child and how special she was. My reply to these people is: "If you have never buried one of your children, you have not earned the right to speak about such things."

Well, all I can say is that the Lord works in mysterious ways. He brought this child into my life to fill the void left by the death of Erin. I still have my other daughter who is 27 and my son by my current wife and he is 14. You may ask, "Do you care this much for your other two children?" Yes, I do. They are the light of my life; the reason I live and work. Nothing or no one will replace them, but when Rebecca entered my life, I was thankful.

Little Rebecca has two wonderful and caring parents and a wonderful, caring sister. Their faith in God and their love for Rebecca no doubt has carried them through some very trying times. They have allowed me to share in their lives and the life of Rebecca. For this; Tom, Julie, and Ariel, thank you.

I go to visit Rebecca as often as I can. Whenever she hears my motorcycle in the yard, it doesn't matter how bad she may be feeling, she is ready to hop on the back of it! I ride her and her sister around the yard several times on the bike to their delight!

Since purchasing my motorcycle about two years ago, I have participated in numerous fund raisers. Most of these were for families of children with special needs, or life threatening diseases. For me it's the best part of being a biker! I remember when Rebecca's mom said, "I didn't know bikers were like this." Like most people, what she knew about bikers was the old stereotyped bikers of the 50's and 60's movies. Bikers are just normal people with a hobby we enjoy. We have families and jobs, it's just when we put on our leather and hop on our bike, and we take on a little bit different persona. But it's all good fun. And when it comes to raising money,bikers are the best, and just let them know that you are doingit for a child, and they come out ofthe woodwork, regardless of the weather.

This courageous, freckled face child smiles and enduresthings that would bring manyadults to our knees.Sheis an inspiration to all! When youcan't cope with life's everyday pressure, your job, your life, think about Rebecca and children like her. You may have heartburn from eating too much, but try taking your food through an IV every meal every day. "Oh my feet hurt", "Oh my legs hurt when I walk" be thankful that you walk. Your stomach hurts; try living with a plastic tube sticking through your skin into your stomach. Try living with bladder problems and more tubes and plastic bags. We get a cold and complain; Rebecca gets a cold, it could kill her. Her beautiful little face melts my 57 year old heart! What a wonderful, wonderful feeling.

Rebecca got her hair cut really short the other day. I asked, "Baby, where is all your hair" she replied, "I cut it for 'Locks of Love'." Through everything that this child goes through, shares her heart and her hair for cancer victims. I ask you, "Is life great or what." She is truly a blessing.

In closing I believe guardian angels do exist and protect us. My deceased daughter has been my guardian angel and I believe she had something to do with Rebecca entering my life. I am not a religious person, but I believe God had a hand in all of this, too. Rebecca has filled a void in my heart and I am grateful.

My special thanks to all Bikers who ride for a cause. I am grateful to be a "Biker for Becca", this freckled-face wonder with a big heart and everlasting smile... God's creation.

©Copyright 2005 by Phil "Country" Crowley