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Monday, June 7, 2010

VisionWalk 2010 -- and what it means to me

This past Sunday was VisionWalk in Orange County. It was our second year taking part of this event, and my first year as Walk Chair. I was very honored to be asked to be the Orange County Chair and be on the board for the Foundation Fighting Blindness. Gavin's Groupies to date has raised close to $13,000 and about 150 walkers. Our original goal was $9,000. I am so proud of our team, and all of the creative, unique ways people have come up with trying to help us reach and exceed our goal. The goal here is to raise money for research. Our particular VisionWalk in OC, has a goal of $100,000. 80% of what is raised for VisionWalk goes directly towards much needed research. Very recently the foundation funded some very critical clinical trials. Beyond the thank yous, and beyond the hugs and admiration to all my fellow groupies, I would like to pour my heart out for a minute if I could. VisionWalk goes past getting a group together and walking to take a stand against blindness. For me, it was my saving grace. Let me explain.

I highlighted this in my speech in a sentence or two on the day of the walk. I found myself getting emotional when I started to talk, so I had to stop and retract. Once I get to tearing up, there is no going back for me. I am a crying fool! So I touched on this, but didn't quite get into details. My family knows, but for those that may not, I will try to sum it up as best as I can.

Last year, in February, we received the diagnosis of Gavin. Or better yet, a confirmation that our suspicion was right. We walked into the pediatric opthalmologist appointment with of course reassurance from everyone that we were wrong. We walked out 2 hours later, with the words of the doctor ringing in my head "there is something terribly wrong". We didn't know if there were other problems with Gavin at that point. If a neurological disorder was causing his blindness, if there was an infection, brain tumor, cancer or the list of many, MANY other problems. Further tests were needed. We were crushed beyond crushed. I remember sitting in my car after the appointment, and slumping into my seat, feeling completely defeated, even more confused and beyond heartbroken. I literally was numb, and could not move. Little did I know, the months following would prove to be even more devastating with family tragedy.

To the internet I took for more research. There is no manual, protocol or even a support number made available to you when you walk out of that doctors office. Where do we go from here? Just wait around for the next appointment? A plethora of questions, a lack of resources, and some hacking at the keyboard brought me to the Foundation Fighting Blindness. I was not strong enough at this point to even begin to talk to people about what was going on, let alone thinking of fundraising, raising awareness and being a part of a group. I was trying to digest my feelings, figure out what goes on next as far as therapy services, early intervention services, his next appointment, his blood work, more tests and more doctor appointments.

I was at the lowest one can imagine, emotionally and spiritually. I just didn't understand?

Through the hacking at the keyboard, I did find out that FFB was having it's VisionWalk in a few months. I talked to Troy and informed him this may be good for us. We pondered back and forth for a few days, and my lows were getting lower. I had to do something. I signed up myself, Troy, Landon and Gavin. Came up with Gavin's Groupies as our team name and that was that. Within a month we raised $5,000 and by the day of the walk, we raised $9,000. We gained recognition for the largest team and most money raised on the day of. Mind you, I was STILL struggling. Everyday. My breakdowns at that time were daily, and for extended periods of time. Today, something will hit me, and I can talk myself through the sadness, with just a tear or two. Last year, my breakdowns could last hours at a time.
I feel that we were able to turn our tragedy in our hearts to a triumph of the soul. Focusing on the overwhelming support for our team last year helped to make me stronger. The little snippets of pleasure by seeing a donation email come in, or someone join my team, or an email of encouragement helped to put aside the sadness. You can't get rid of it. It is a sadness for your child, out of your control and out of the grasps of what you can instantly do to make it better. But slowly, the energy began to build. The hope factor began to elevate, and it all began to occupy my heart, and in a sense take over the sadness. I began to learn that this was all helping me. VisionWalk began to heal me, personally. We were able to focus on the positivity, our conversations were around who was joining our team and the energy again started to build. I began to learn that sharing Gavin's story, also helped. This blog helped. Sharing links on Facebook, helped. It made me stronger. Little by little, I was getting pieced back together. My heart was starting to mend and I could see a glimpse of the future with us trying to bring change.

VisionWalk was a part of the missing puzzle piece the day we received his diagnosis. One of the lowest days in the history of my life so far, it was a piece that I couldn't even comprehend to bring into my life. I wasn't ready to not only want to understand what was wrong with my son, I wasn't ready to face it, stare it down, or accept it. VisionWalk helped to make this happen, as silly as that sounds.


So on this past Sunday, when you put on your orange shirt and walking shoes, and made your way to Cal State Fullerton, please know that you are part of a much bigger picture for me. You are healing me. Each step you take with us, ironically, is a step closer to my heart being better, stronger and ready to take on the next step. Each individual person brings that strength. There is truth to the adage 'strength in numbers'. Even if we don't bring a cure to Gavin, we WILL bring change. Change in awareness. Change in the way others can appreciate the value in being able to visually navigate their life.

That is what VisionWalk means to me. It is more than a group of people walking a few miles, it's more than me trying to greet every one of you at the walk, it's more than me being asked to be walk chair, or give an interview or a speech. It is much, much more. It's me facing the fact that my son cannot see it all. It's facing it with you by my side, and behind me... giving me the strength to be the best mom, advocate and most stubborn person in the world, because I will not let this get this best of us. And we will not go down without a fight.


You are a part of my strength to fight that fight. You are a part of the bigger picture. You help to make up where I lack; and I am speaking on behalf of my entire family.

....I am forever thankful.


PS - Thank you Brianna for the pics, I used some too. They were too great not to. :)

4 comments:

  1. Beautifully written! I cannot wait to meet you and give you a great big hug!

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  2. Jen,
    Last year, I could not breath. I was numb too and the boys and I were not alive. It was so hard to do the walk in Chino Hills and I could not make the walk in Fullerton. We have both been forced to stand up and walk forward and your strength with family and friends is electrifying! Kyle and I feel stronger. We are putting our pain into what we can control. Gavin's Groupies is overwhelming and electrifying! We felt so good after Sunday and can't wait until next month! I am so proud to be your Aunt!

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  3. Loved this post. That's what moved me to tears the day of the walk knowing how proud you must be for all you've done this past year and seeing all these people out here supporting your family.

    P.S. You are welcome for the pictures. I wish I had taken more :(

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  4. Jennifer, You are an amazing woman. What you have done on behalf of Gavin, and your family is unbelievable. You INSPIRE me. You have handled this whole situation with a DRIVE that surpasses all. I pray that the Lord will continue to sustain you, Troy and your boys. I pray that there will be a cure. And I pray that one day you and Troy can look into Gavin's eyes and He himself will be LOOKING right back at you. There's nothing impossible for God. He's is the healer and the miracle worker. Stay strong my friend.

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