This entry is an attempt at catharsis for me. You might find it somewhat whiny. If that's the case, I apologize.
My family has a "genetic predisposition" for childhood cataracts on my father's side. As far back as we can trace, it has made life more difficult. Those of us born in the last seventy years or so have actually been the "lucky" ones. Corrective surgery, especially in children, is a recent development. From what I've heard, my great grandfather never had any form of corrective surgery, even after it became more common place. He simply learned to live blind.
A cataract is a medical condition that causes the lens of the eye to become progressively opaque. Treatment involves removing or at least destroying the defective lense (I still have some remnants of my original lens floating in one of my eyes). In most cases, artificial lenses are inserted at the time of cataract removal.
Cataracts in children are rare, and the causes are varied. It's hard to find statistics. My wife read that there were 3 cases for every 10,000 children. They can be caused by infection, hereditary factors, and various syndromes.
My grandfather used to tell the story of his surgery, and it was horrifying. He woke up with a brick on either side of his head to prevent movement, he was tied to the hospital bed for days, and had to be hand fed.
My surgery wasn't that traumatic, but it was one of the most traumatic times of my life. I was almost four years old. I was the first child that my surgeon had encountered with cataracts. I had to spend two to three days in the hospital in a children's ward. My parents were only allowed to stay overnight on the first night, and that was in the waiting room area. They tried to make me more comfortable by telling me that my parents were actually just retiring to another room after visiting hours, but even at that age, I knew that didn't add up.
It didn't help that they had a ward instead of individual rooms. The kid across from my bed had been badly burned. He was in his teens, and he hated it whenever I'd get whiny or cry for my parents.
One night it hit me like a ton of bricks. I knew my mom had left for the night, and that I couldn't see her. I started screaming and tore the protective patch off my recently operated on eye. The nurse calmed me down, replaced my patch, and rocked me to sleep. I don't remember a lot of pain, just fear and separation.
After the operations, I could only sleep at night if I was in bed with one of my parents. I had an extreme fear of separation that I'd never had before. I'd wake up screaming with nightmares about the hospital.
In those days (1977/1978), they didn't replace the defective lens with an artificial one. I had to wear what are commonly known as "Coke-bottle glasses." The vision isn't bad. There's no peripheral sight of course, but the vision is pretty clear. Without the glasses, everything is extremely blurry.
You can imagine the stereotyping and bullying I endured for most of my childhood because of these glasses. By the time I was ready for contact lenses, my self esteem was firmly set at low. I only recently received artificial implants.
As a young man, I'd daydream about what it would be like to be a husband and eventual father. It was always something that I looked forward to, but a dark thought would often fill me with dread: what if my kids inherited my eye problems?
The nightmare came true for me this week. My oldest son, Owen was diagnosed on Monday. Since his birth we've had him periodically checked. Last year he went to see an optometrist who confidently stated that he was cataract free even though he was showing signs of being near sighted. His failure of two recent vision tests for kindergarten had us visiting a new optometrist who quickly noticed the cataracts.
I've been trying to be brave and strong, but it's heartbreaking. I hate that he will never have 20/20 vision. I hate that he has to go through any kind of surgery, even though the process has gotten so streamlined that he'll likely not have to stay in the hospital at all.
More than anything though, I pray that the process doesn't traumatize him. I pray it doesn't take away an ounce of his innocence, his fun.
It's doubtful that he'll have to wear thick glasses, so I think he'll escape most of the bullying and stereotyping, which I'm grateful for. People keep saying that all of those hard situations molded me into who I am now, they made me a stronger person. I see their point. I see how the same situations molded my cousins into good people, tolerant people, but I can't imagine ever wanting my kids to go through it all the same.
My parents are especially understanding, and have pledged to do everything possible to help (as have many friends). My mom is taking it pretty hard. All of Owen's grandparents have stepped up their doting.
We're still in the early stages of the process. He has another appointment with the actual surgeon next Tuesday. We're being told he's the most experienced pediatric cataract surgeon in Genesee County, which is a relief. I'm full of anxiety about weeks filled with eye drops that Owen already hates, after surgery pain, Owen's frustration over everything. I know, in the end, it has to be done, and Owen will be able to see at least as good as I can. I know there's light at the end of the tunnel, but we're at the farthest point away right now.
I've been praying and will continue.
