When I was younger I used to dream of the children I’d have. I had it all figured out- one girl and one boy- two years apart. I figured I’d always be married and maybe even be fortunate enough to be a stay-at-home mom in a cute house with a white picket fence. When I think back on that, I have to laugh. Life really throws you a curve ball every now and then. For our little family, things could not have turned out so differently.
I don’t have a house with a white picket fence, though I did buy a nice home. I didn’t stay married to my husband, but we divorced. I didn’t have my one boy and one girl. My name is Laura. I am a school teacher from central California, with two boys, ages eight and twelve.
When I had my two children they were perfect at birth. They were the cutest babies! They both were pronounced healthy by the attending physician and they were active as could be! My oldest son, Bronson, loved to scale draperies and walls when he was a toddler. He is the sassy child. My youngest son is named Colton Chase Meyer, after Edye Smith’s two boys who perished in the Oklahoma bombing.
Now that I look back on things, I realize I took a lot for granted. I think we all do. When our kids are healthy, we don’t think about bad diseases- illnesses that can alter a child’s life. We get caught up in our own lives, problems… and for a single mother, that is especially true. We work hard just to pay the bills and put food on the table. There is little time left for idle worries.
Our lives changed in the summer of 2001, when Colton Meyer was four. I had noticed for quite some time that Colton had problems getting around. He would trip constantly, run into counters, trees, people, and anything else that was stationary. I had taken him to the pediatrician when he was younger. The doctor told me not to worry- that kids “grow out” of their vision problems. Now that I look back on it I see I should have taken my son to the eye doctor at a much younger age- but listening to his pediatrician, I waited until he was four years old. So, at age four he had his eyes checked by a “real” eye doctor. You know that “gut feeling” you get when you know something’s wrong with your kid- but you can’t put it into words? Well, that is exactly how I felt. That doctor left the room only to return ten minutes later with his partner. She peered into my son’s eyes too. Then she left the room. Colton Meyer’s doctor looked at me and explained that he was referring us to a retinal specialist. He explained that Colton had some “changes in the pigment of his retina” and that he was concerned. So a week later Colton was at another doctor’s office. I could tell that he didn’t want to be the bearer of bad news. I had researched eye diseases on the internet during that week and I already knew the diagnosis – retinitis pigmentosa. I asked the specialist if that is what had stricken my young child. His response was, “Let’s not put the horse before the carriage!” I know then that he knew my son was ill- but nobody wants to be the “bad guy.” We got our referral to Jules Stein Eye Institute at UCLA and a few months later we got the official diagnosis- Leber’s Congenital Amaurosis/Juvenile Retinitis Pigmentosa. So what does this mean in layman’s terms? It means that my son suffers from a hereditary and blinding eye disease for which there is no treatment and no cure. My son will go blind unless they find a cure. It is only a matter of time.
Time – that precious thing that I had taken for granted my entire life. I think I cried every night for a long, long time. But during the day I was strong. After all, how can a mother break down in front of her child? And what good does that do? None. So, I decided to be proactive. I decided to get out there and really DO something to help Colton. First, I took his story to the media. He had several NBC TV spots. People called in and offered horse back rides, rides on fire trucks, and even a trip to Disneyland! One man even offered to take him up in an airplane. (We rejected that offer of fun!) People in our community were great. I had come up with a brilliant idea- one to help my son and one to drum up funds for his foundation. Being a single mother and not being able to travel, I asked people to bring the world to my son. I reached out to people and asked them to mail their vacation photos and postcards to Colton- to show my son the beauty of this world before he loses all his sight. I think we received about 20,000 pictures that first month! My mission was two-fold… encourage people to show my son the world… encourage people to donate to the Foundation Fighting Blindness in Owings Mills, Maryland. (www.blindness.org). I thought to myself that if enough people could hear about Colton, surely they would want to save his eyesight! And in the beginning, the FFB received a deluge of donations. They even put Colton’s name on a plaque at their headquarters in Maryland. Someone referred our family to the Hugs and Hope club for sick kids and Colton was (and still is) featured on their website. Then someone else referred us to Caringbridge and we started a website just for Colton. We did neat things and got to meet some pretty special people, like Jeff Gordon and Jimmie Johnson. A Dupont rep saw Colton’s story and told Jeff about him. That was something Colton will never forget. I wrote a story for the book, Chicken Soup for the Nascar Lover’s Soul, and was able to spread Colton’s story that way. I did my best to turn a mother’s nightmare into something positive.
That was four years ago this nightmare started. When Colton was first diagnosed, he was four years old. This February, he turned eight. My son has very little sight left. He uses a cane on some occasions- especially in dim light or dark situations. He is learning Braille. As a matter of fact, we are BOTH learning Braille. Is it hard to see this happen to my son? Unbelievably. Do I still cry at night? Every once in a while. But I think I’ve learned from this situation as well. I have learned not to take life for granted. I don’t look at the Pacific Ocean or a rainbow in quite the same way. I cherish those experiences. And when I see my son watch the sun set over the Pacific Ocean, I feel a pang of hurt- one that will not cease until a cure is found.
So what do we do today? We deal with it. We deal with life. It might be easier now than it was four years ago but it isn’t an “easy” trial. There are good days and bad days. For example, today was a pretty bad day. Colton’s UCLA doctor told us last month that Bronson and I needed to be tested as well. I prayed to God- “Please let it be me- not my other son.” Yet today I sat in a doctor’s office and listened to the doctor tell me to bring Bronson back next year. Although her attitude was positive and she insisted he was fine “for today,” I think I know what that means by now… The blood vessels in my older son’s eyes are thinning in one eye- it could be nothing- but in a family with a history of RP- it could be the first sign of retinitis pigmentosa. My son looked at me and said, “See mom? I told you I was fine!” Yeah, let him think he’s fine. “I hope he’s right”, I thought to myself. Dr. Love left the room telling me he should be ok- at least for the next five years. Seven hours later, I haven’t shed a tear. I think I’m numb to hurt.
So my mission today is no different than my mission four years ago- only that I am more determined than ever to find a cure for this monster that is eating away at my little boy’s eyes- and one that might be ready to overtake my second son. I encourage you- all of you- to take a moment and send our story to everyone you know. Encourage them to donate ten bucks to the Foundation Fighting Blindness. Ask them to send Colton a few vacation photos. Ask them to say a prayer for our family.
And the next time you feel down and depressed, hug your healthy kids. Be grateful that no matter how hard things might be for you, at least your kids have sight. Don’t waste your time dreaming of that white picket fence and perfect life. The “best” thing you could get in life are healthy children who will be able to witness the beauty of life forever.
Other ways you can help:
Contributions of photographs for Colton’s scrapbook may be sent to:
Donations for research may be sent to:
The Foundation for Fighting Blindness
11435 Cronhill Drive
Owings Mills, MD 21117.
Article by Laura Cleverly