Orange County Chapter Highlights

Hold your child like you’ve never held him before…

When a parent hears for the first time, “I’m sorry but your child has an incurable eye disease and is going blind.”, not only does it feel like you’ve been sucked into a black hole of darkness; you feel as if you are having an out of body experience. In no time, there you are looking down upon yourself, sitting across from the doctor and thinking, “That can’t be me he’s talking to”. But he is.

Amy, Toni, and Sean Amy, Toni, and Sean

When you come back to the now, not only are you shocked and numb, but the feeling of helplessness, overwhelming sadness, and the need to hold your child like you’ve never held him before comes over you. At that moment, you probably have no idea that those words will change your life forever.

Once I was over the shock, in came the guilt, blame, and anger; emotions that can harm a family in a time of need, but emotions that are expected and very normal. However, in some cases, and I hope in most, this type of news can bring a family closer than they ever were before. Thankfully, this was the case in our family. Our family had a new direction in life; one that I would have never dreamed of in a million years.

Sean was only five when I heard those words for the first time. That is when I was told he had retinitis pigmentosa (RP) and would lose his sight. Retin…what? I had never heard of such a thing. As those words sunk in, I did feel not just intense guilt, but helplessness and shame. I never blamed anyone, but myself and was terribly angry for doing this to my son. Because of me, my son will be blind.

Unfortunately, I had no idea that those negative emotions were getting the best of me. My husband, Dean, or my parents could not really see what was happening because they were all too close. Sean needed his mommy. He needed me to be happy and healthy, but I struggled and couldn’t do a thing to get through my funk.

Often times, it takes people, and community to help a person face these types of challenges in their lives. Others outside of the family can help one move through the fog and see the sunshine again.

I found the Foundation Fighting Blindness through the Internet. I found myself spending hours at work, surfing and trying to find answers. FFB helped me better understand what RP was and connected me with others facing similar situations. But it still wasn’t enough.

Then one day, my boss called me into his office. As I said, I spent hours doing nothing productive, productive to him that is, and he wanted to know what was going on with me. I was behind on my audits and though I showed up for work each day, I had nothing to show for it. He confronted me, which wasn’t easy, because he was one of the nicest guys in the world. I broke down and cried. I cried hard and long. And through my tears, I told him what had happened. This was in June, and Sean was diagnosed in April.

My boss did what most bosses shouldn’t do. He gave me a hug and instead of saying, “Get back to work,” he asked me, “What can I do to help?” We talked and as I went back to my office, I had an incredible feeling of liberation. I felt cleansed. The news was out and it was ok. The fog was beginning to lift.

Ten years later, my old boss is still there supporting Sean. That’s what it’s all about, people helping people. That’s people who care.

Once I woke up with my new found energy, I was able to focus on the needs of my child and what I could do is to help him have a normal life. I wanted to give him the best future possible. To help achieve that, I started volunteering for FFB and on the road to fundraising. Fundraising helped me move that negative energy into something positive.

With my love for dogs and animals in general, I started “People and Paws – Walk for a Cause.” which is now known as VisionWalk. Together, a group of blind and sighted helped raise funds for our husbands, wives, children, and for some, themselves, in hope that someday a cure can be found. That was my goal – “To find a cure”. That was my new direction in life and it still is today.

Life continued on in a positive direction and we decided to add to our family. In May 2001, we were blessed with our baby girl Amy. Amy’s vision is fine and shows no signs of RP.

Sean attended mainstream schools, was learning Braille, and never gave his blindness much thought. I wanted him to feel that there was nothing different between himself and the next kid. I don’t think he ever felt that way, until he started high school. Sean was finally faced with a number of challenges that he wasn’t particularly fond of. His friends were playing football, talking about taking the drivers exam, and going on about the car they hope to get when they turn 16. For many kids, an anticipated dream – a dream they will one day wake up from and go for. For Sean, it’s a cruel reality that he is blind and driving a car and obtaining a drivers license is a dream that will never come true.

As a parent of young blind teen, it takes even greater patience and understanding than it does for a sighted teen. Parents can compare notes, but when you throw in the blind issue, there is no comparison. Imagine living in his world? I can’t and I live with him.

Because of Sean, I have learned to be more empathic towards those that suffer from various forms of disabilities. Besides me, others in our family including Sean have benefited too. We have all been blessed in ways, with a greater awareness and sensitivity. Sean has worked with the blind kids in the summer to help teach them Braille at his old elementary school. The kids love him. Sean’s the coolest to them.

Now Sean has a paying job tutoring Braille to kids of all ages at the Blind Children’s Learning Center. I often wondered and worried what type of work Sean could get, but here is he, teaching kids Braille. That’s what I call giving back!

I’m not worrying so much anymore, but there is still college…yikes!

Over the last 10 years, Sean’s blindness has brought me to people that I wouldn’t have otherwise met. Wonderful, loving, and caring people blind and sighted, and now together, we’re all fighting for the same thing, a cure.

There is something about a child that losing his or her sight brings out the best in people. No one wants that to happen to anyone, especially a child. I met, quite by accident, one of those people and her name is, Pamela Scholten. Pam was so touched by Sean and his story that she decided to help. She supported VisionWalk, made caring donations in Sean’s behalf, donated to and attended a VisionCrop that I hosted, and is now working with my husband and me, to help launch a Casino Night. All of this to help those who have lost or are losing one of our most treasured senses, our sight.

Pam has even taken a step further and started her own non-profit company, “Creations for a Cause” (http://www.creations4acause.net/). It combines her love of photography with fundraising and offers beautiful greeting cards.

A simple chance meeting,and I got a great friend and wonderful supporter.

Everyday is a challenge. Everyday my child’s lack of sight is brought to the surface. It’s nothing that can be ignored or forgotten. We just chose to face it positively and not dwell on it. We decided to move forward and not look at it as an obstacle, but an opportunity.

I will never again blame myself for Sean’s blindness. It happened and it is what it is. Instead, I’d rather look at it as a gift. I feel truly blessed to have a blind son. Every child enriches your life, but Sean has enriched ours in many ways – only a blind child can.

Toni Gavello