Marie McNamara…mother of Keriann:
The day she was born, we expected everything to be wonderful. I’d had a normal, healthy pregnancy and had two children already with no complications. Right after she was born, I noticed that her left eye wasn’t open. I thought it was swollen from the delivery. A few hours later as I was nursing her and looking into her face, I noticed again that something didn’t look just right with her left eye. I began to wonder if something was wrong, but I kept assuring myself that nothing could possibly be wrong. One never expects that something could happen to us or someone we love.
We called everyone; friends and relatives, to tell them that we had another baby girl and that she was just fine. One of the hardest things for me was having to call everyone back to tell them that something was wrong with her.
During the first night, I couldn’t sleep. I was consumed with thoughts about her. Maybe there was something wrong with her? When I did sleep, I would wake up again with that thought in my brain. It wouldn’t go away. I kept reassuring myself that I was probably imagining things. I suppose this was a form of denial.
When her pediatrician came in the next morning to release her from the hospital I asked him to check her left eye because something didn’t look right. He got a terrible look on his face and made an excuse to leave the room. Nurses came in the room and were suddenly so nice to me. The pediatrician tried to explain to me what was wrong, but I’m not sure he really knew. He sent us to see the pediatric ophthalmologist that afternoon. The ophthalmologist acted as if this was no big deal. I wanted to scream. He was very cool and calm about the whole thing. By this point, I had been crying on and off all day. I didn’t know what was happening.
The doctors had told me that she could be brain damaged. They wanted to do a CAT scan, but I refused. We just had to wait to see if she did all the things she was suppose to do at different stages.
Those first few days are a little hard to recall. I cried a lot, I was so worried about what would happen to Keriann. I thought of how she would be ridiculed by other children, maybe no boys would ask her out, I was afraid that someday she would look in the mirror and hate herself because she looks different. I just remember being consumed with worry about what her future would hold.
I also got the feeling that people felt sorry for me. That made me crazy. Why should they? I didn’t feel sorry for myself. I felt sorry for my little girl. She was a beautiful little baby. I loved her so much; it didn’t matter to me if she had a problem. I got the feeling that people thought I should fall apart and crawl in a corner just because my baby was born with a birth defect.
The first couple of months were pretty normal. Some of the worry was relieved by the fact that she did appear to be developing normally. The ophthalmologist suggested that we go ahead and take to see an ocularist. That frightened me. I didn’t want anyone poking at her anymore. She had already been treated like a guinea pig by most of the doctors she had seen. I didn’t want to put her through anymore pain.
We brought her to see the ocularist and she was subsequently fitted with a conformer. I thought she looked better already. This was a hard time for me, because I didn’t really know what to expect. I had never known anyone who wore a prosthesis. But after I saw how well she was doing, I felt more comfortable with the process.
I must say that I was so afraid the first time that I had to remove it. I had the shakes. Actually, I couldn’t get it out. I had to bring her in to you [Walter Johnson] to take it out. I also remember feeling like a fool because it seemed that I cried every time I brought her in to see you. I should add at this point, that I have never been more than a phone call away from her since she was born. If she gets something in her eye, it causes her terrible pain and the prosthesis has to be removed right away. Thus, the reason for me never being able to be more than a phone call away. I look forward to the day when she can remove it herself. That will relieve a lot of anxiety about leaving her with a sitter. We’re working on that now. She’s been able to remove it one time by herself.
There have been times when she has been hit in the face and would cry and cover her eyes. My heart falls to my feet. I immediately think something may have hit her in her sighted eye.
When she got her prosthesis, we were so happy. It looked so beautiful. It really made things easier. She blended in the crowd. No one would ever know unless I told them. That did make it easier, because I didn’t have to explain it to anyone.
Also, there was a period of time when I searched for answers. Why did this happen to her? I blamed myself, but only for a short time. I knew in my heart that I had been so careful during my pregnancy. After a time, it didn’t matter anymore.
I think what had made this problem seem so small is the fact that she really is such a normal little kid. As I said, one of my biggest fears is what the future would hold. Well, these past few years have been very normal. I do know that she will lead a very normal life, she just sees with one eye instead of two. That really is the only thing that makes her different than anyone else. She has always been this way, so she doesn’t know anything else. She doesn’t think anything is wrong with her. She is just one of the kids. We’ve always treated her just the same as the other two. I hope it will give her a healthy attitude about herself.
Even though it angered me in the beginning, I think the ophthalmologist’s attitude that this was no big thing, was probably the best thing he could have done. It really is no big thing. You [Walter Johnson] and your staff also reassured me that she will be able to live a normal life wearing a prosthesis. And she has.
Something my mother said to me came to mind. She said that God must think I am a special person, and that is why he gave me a special child. I will be able to give her that little extra love and support that she will need growing up.
That comment from my mother did make a difference to me.
I still worry what the future will hold for her. She starts school next year, and that will probably pose a lot of new and different problems than the ones we’ve faced to this point. I think if we continue to treat her as a normal, healthy kid, things will be fine. I hope.
Audrey Levy…mother of Jeremy:
Jeremy was born almost three years ago, after a normal, trouble free pregnancy. Our dreams were shattered an hour later, when we were told that Jeremy had no eyes, and would never see. We were also told that eyes, ears, and brain all form at the same time. Tests, and Jeremy’s hearing was normal, and his brain formed normally; as to how it functions, we would have to wait and see (about a year). How could this happen to us and our perfect child we envisioned? Our initial reaction was rejecting and denial, which we later found out were standard emotions. Our questions were endless. Are eye transplants possible? Does he have eye lashes? Will he blink? Will he close his eyes when he sleeps?
With a loving family and caring professionals, we accepted Jeremy for who he is, and began our journey through life together. We realized that blindness would not prevent Jeremy and us from enjoying life with slight modifications. We could still go to Disneyland, play ball, and go on family outings, and we have done those things.
Professionals have been extremely helpful in guiding us down the right path, explaining options and getting the proper care. They have also extended themselves in helping us fight long and frustrating battles with insurance companies to cover the costs of proper care for Jeremy. Our families have been extremely supportive and although not overly knowledgeable about blindness, are eager to learn. Make no mistake, it is not all peaches and cream now, but we continue to grow and consider ourselves very lucky. Milestones other parents take for granted with their children require much more work on our part, but we are rewarded with a sense of accomplishment and pride.
We have learned to develop a sense of humor over insensitive people’s reaction to Jeremy’s prosthesis and his blindness. (He doesn’t have an eye infection, and He’s not mentally retarded because he cannot see.)
Jeremy is just like other children, except he cannot see. We try to focus on his abilities and help him maximize them. We know Jeremy will be a success and will continue to enjoy life.
