Kelly tells their story of Steven first being diagnosed, and her thoughts of having another child. Please read on......................
I remember the exact moment that I felt love for Steven. I know that some people say it is when they first feel the baby move, or when they first hold the baby. For me, it was as I was hanging up from the phone call I had just received confirming that I was indeed carrying my first child.
Growing up, I had never wanted a career. The only thing that I wanted out of life was to have children and raise them. Finding out that I was carrying Steven was one of the happiest moments of my life.
I had a normal pregnancy, with the exception of a short period around 5-6 weeks gestation. I had some spotting. An ultrasound showed that I was carrying twins. Around 8 weeks gestation a second ultrasound showed that only one baby survived. The rest of the pregnancy was very normal.
I was so excited when the doctor first placed Steven into my arms. I was finally able to meet this little guy that I had been talking to for so long. Looking back now...I could see that his eye looked half closed even then. I didn't know what a newborns eyes were supposed to look like though.
During my pregnancy I prayed daily for God to send me a healthy child, even if I couldn't possibly imagine having a child any less than perfect. Steven was 1 1/2 days old when I realized that I hadn't counted to make sure then were 10 fingers and toes. Birth defects were the last thing on my mind. All fingers and toes were present and accounted for.
I asked the nurse upon leaving the hospital if his eye looked funny to her. I wanted to know when it would open up fully. She said that it was because of the eye drops given at birth and that they would be fine in a couple of days. This of course was very not true.
It was my Mom who had first noticed his eye was not the way that it should be. Sometimes when I looked at his eye I thought that it was missing part of the iris, and then sometimes I didn't. I mean, who would want to believe that their child had something wrong with them. Then I brought it to my Moms attention and she said that she had noticed it in the hospital. My world literally fell apart. I was expecting her to say something like don't be so silly...his eyes are fine . Instead she confirmed what at the time I thought was a nightmare. This should have been one of the happiest times in my life...but, it wasn't it.
I think that this was on a Friday, because any physicians office that I could think of calling was already closed. So I called the Warm Line phone number that the hospital had given me. A nurse answered the phone and I described what Steven's eye looked like. She then proceeded to tell me that my child was definitely blind. To this day, my blood still boils about that phone call. At that time, it was just a couple of days after giving birth and I had a lot more important things on my mind than to think about getting her name. She had no right to give me that diagnosis...first of all, she wasn't an ophthalmologist...secondly, even an ophthalmologist couldn't diagnosis blindness from a phone call. I wasn't thinking clearly enough though to realize that it was ridiculous for her to diagnosis him. I was too busy crying because my worst fear for my son had been confirmed.
During this time I was feeling very, very sorry for myself. I thought that there was something wrong with me that I couldn't even have a normal child. My Mom had been staying with us, and then I went back with them to their place for about a months time. I was an emotional wreck. I thank God for being able to have the strength of my family around me.
Several days later I was able to get in to see our new Pediatrician. She was really concerned about Steven's eye and got us an appointment right away with a Pediatric Ophthalmologist. This was the appointment that made me see that this situation was not the end of the world. I learned that Steven did have one healthy eye, and there was no reason to think that eye didn't have vision. His other eye was diagnosed with Microphthalmia (small eye), partial Aniridia (absence of iris) and Coloboma (closure defects). The PO told me that in 95% of the time, when a person has these conditions they are present bi-laterally. It was at that moment I stopped blaming God for this happening, and I realized that Steven had indeed been blessed with sight. To this day, that is still my thinking.
Life went on, pretty much the same way that it does for any other new parent. The only time that I was reminded about the fact that Steven's eyes were not cosmetically the same was when we would get stares from people. I was, and still am, very happy to talk about Steven's eye or his prosthesis. I prefer it when people ask a question about it rather than just starring. One particular outing we had when Steven was about 9 months old really sticks in my mind. I had taken Steven to Sears to have his picture done. The photographer was talking to me about the photo re-touching...apparently they can clear up blemishes and that sort of thing. Then, pointing to his eye, she said "you don't expect me to be able to fix that do you"? I was stunned by the comment and simply said, "no, I don't expect you to fix that ". She replied "good, cause I can't do miracles". It just floors me that some people can be so insensitive. This was not the norm though. Most of the people that have commented about Steven's eye have done so out of curiosity. The stares have long since stopped. These days the only eye comments we get are about his beautiful blue matching eyes. If people only knew what pleasure I get out of these comments.
Steven got his first prosthesis (lense) when he was one year of age. I was very apprehensive about getting it at first. I didn't think that I would be strong enough to deal with putting it in and taking it out. I found the strength...just one of the many gifts that Steven has given me. We started with a clear lense to get his eye used to wearing something over it. He had that one for a couple of weeks. Then the Ocularist built upon it by adding wax and then painting it to match his other eye, and finally it was baked. The whole process was really quite interesting to watch. After the first month of wearing his painted lense, we were able to leave it in his eye all the time. To this day the only time it is taken out is for an eye appointment or on the rare occasion of an eyelash getting behind it.
We went through a kind of rough period of what was thought to be eye infections. They lasted 1 1/2 years. This was definitely not a fun time for anybody involved. There was so much discharge coming out of his eye, and I couldn't convince his PO to probe his tear ducts. There would sometimes be a period of 1-2 weeks between discharge problems during that 1 1/2 years. Finally, at the end of that period, Steven was being operated on by a plastic surgeon to have his lower eyelid repaired. The eyelashes were turning in and were rubbing against his prosthesis. I asked the plastic surgeon to probe his ducts at the same time. Sure enough, one of them was totally blocked and with scar tissue...the other one was partially blocked. The doctor cleared the partially blocked one and finally we had no more discharge. Steven was 3 years old at this point. He is 5 1/2 right now.
Five and a half years ago I would never have believed that each and every day of my life would not totally focus around eye problems. Life for the past 2 1/2 years has been very normal. Steven sees his PO every 6 months to get tested for glaucoma...so far he is fine. He sees the Ocularist once a year for a cleaning.
Genetic testing results showed that his eye problems are not genetic, but they put the risk of another child being affected at just under 1 %. Steven was my first child. One percent was still a pretty big risk for me. I wanted a doctor to tell me that my second child would definitely not have these eye problems. So, I had to decide if I would be able to deal with having another child with the same eye problems. In the end, I decided that I would be able to handle another child with the same problems. Steven has a little sister, and she has two healthy eyes. I am a very lucky person to be blessed with two wonderful children. I thank God daily for blessing them both with sight, and for blessing me with them.
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