Perfect To Me. A Girl With Aniridia.

When I was 21 years old, I gave birth to my second child; a beautiful little girl. I named her Andrea Meaghn-Jade. I've always insisted on being unique with my children's names, and they all have hyphenated middle names.  Maybe it was also partly due to me wanting to use every name I could think of that I liked. I still have plenty left for future generations.  As a matter of fact, both of my daughters know that two other girls' names I had picked out were "Storey" and "Waverly", and each has picked one of those to use for their daughters name; so, in a way, I guess I still get to use them! Pretty cool, I think. I was blessed with a doubly-unique little girl, with Andrea.  It's actually quite interesting how I had already chosen "Andrea" to be her name, given what she was born with.

Andrea was born with a congenital abnormality called Aniridia. The term aniridia literally translates to absence of iris, usually of both eyes. In her case, definitely so. There is much more to it than that, but let me start at the beginning.

Call it mother's intuition, instinct, or what you will, I knew within a couple of hours of them handing me my daughter that something was wrong.  My first child, a son, had been born with big blue eyes, and he would just fixate on everything around him, totally full of wonder, as soon as he was able to take a peek at the world. I realize that not all babies open their eyes fully within a few hours, but mine did. When my daughter opened hers, I noticed immediately that there was just a simple, very thin ring of blue around the outside edge of what seemed to be a huge pupil. Why would my baby's eyes be dilated? Had they put drops in them? Had they done hearing and vision tests already? I knew that they did these things early on while in the hospital, but nothing was ever said to me, so I immediately became my child's advocate. I thought perhaps her eyes were merely dilated for some reason, as I'd never heard of anything like Aniridia before. So I asked, "Why are my daughter's eyed dilated?" That very first day of her life was a whirlwind. It turned out not to be such an easy question to answer. Her pupils didn't respond to light.  There was no dilation or contraction. Why this was not noticed by someone BEFORE I said anything is still baffling to me. There was barely a blue circle. There was, in fact, just black. I was told that further testing and discussion would be had at her 2-week appointment with our pediatrician. That's the day I literally fell to the floor in the patient room, landing on my rear end, and sobbed. I cried and I was inconsolable. I heard everything the 2 doctors were saying, but it was like a dream. My daughter was essentially blind. She could see movement, shadows, and shapes, but not really detail. Aniridia is a congenital, meaning to be born with, defect that isn't just isolated to absence of the iris. Andrea also was born with cataracts, glaucoma, nystagmus (involuntary eye movement; with her it was rapid eye movement from side to side), strabismus (when the two eyes do not align with each other; in her case, one eye would usually look forward while the other crossed inward, or sometimes both would cross), macular hypoplasia and macular degeneration (underdeveloped macula; has a dark spot in the center of her vision and sees better peripherally, and it will gradually get worse), underdeveloped retinas, associated Wilm's tumor or cancer of the kidneys, cerebellar ataxia (inability to coordinate balance, gait, and movement), genitourinary abnormalities, and retardation.

This was a lot of information for me to take in all at once. I was lead to believe she would have to be in special classes, wouldn't be able to attend regular school, wouldn't be able to read or write without extra large visual aid, if at all, wouldn't be able to run and play with other children, wouldn't be able to drive, and would essentially lead the life of a blind person.

Please understand I know this is not the end of the world, and there are always worse things, but when it is your daughter they are talking about, it seems like the world is crashing down around you and you find yourself surrounded by a million questions. The why's and how's that penetrate your mind are innumerable, especially when you don't have a clue about your dad's side of the family because you, in fact, have never met your own father. Where did this Aniridia come from? Why did Andrea have it? Was it my fault? Did it result when I got kicked in the stomach when I was 3 months pregnant with her? It's a question that will never get answered, so I made the decision right then and there that I would treat her just like any other child, and never make her feel like there was anything wrong with her.

Our next step was seeing the pediatric ophthalmologist, who tested her cataracts and said they were clear, but would eventually cloud as she got older. Her glaucoma pressure was normal, but would increase as she got older. She got her first pair of adorable glasses when she was 1-1/2, in order to magnify things for her in an attempt to help aid her vision. Honestly, I'm not sure whether they helped or irritated her more. When she was finally old enough to recognize shapes, she couldn't even make out the biggest one on top; you know, where the letter "E" usually is? The huge one? Yeah, she can't see that.

The first time she tried to put on make-up, in secret of course, was quite hilarious.  She obviously could not see what she was doing at all, but that didn't stop her. As a matter of fact, by this time I had realized that there wasn't much that COULD or would EVER stop her. She was a force to be reckoned with. Strong-willed, stubborn, persistent, courageous.  I walked into the living room one day when she was 3 to find her almost to the top of the entertainment center, having scaled 4 shelves already like a little monkey with muscles as steel as her... will. I put her in a special pre-K class to prepare her for school, and it was amazing. It was perfect for her. After that, though; public school. All the way. She never went to a special class again, went to school and classes right alongside all of her friends and same-aged peers, and guess what? She did great.  Sure, she had to sit in the front of the class. She had to use a magnifier for her book sometimes. The first few years she had a vision teacher come in every week to make sure she was getting what she needed. Mostly, she was just unashamed and unabashed about the whole thing and stuck her face right up to her papers and books, like quite literally a quarter of an inch away, and did her work without a care in the world.

She watched TV the same way. She still does. Every time someone starts to say "If you keep watching TV that close, you'll go blind," I have to either cut them off and let them know that she actually IS blind, because they don't realize it, or bite my tongue because it's one of her brothers being a smart-ass.  See, hardly anyone ever really realizes there is anything wrong with her eyesight until it's time for her to complete a task that requires astute visual acuity, or until someone mentions it; she has made it that oblivious. She did play with other children and run around just fine, granted she did run straight into the mirror when I put her in karate, but only once. Yes, I put her in karate. She was about 8 years old and her brother was taking karate.  She wanted to take it too. I wasn't going to tell her no. She almost made it to an orange belt (her third belt) before she switched to dance with her sister. The day she ran into the mirror didn't phase her a bit. Not even after I went running onto the mat, almost got kicked dead in the face, yelling, "OMG, Andrea, are you okay? Didn't you see yourself coming?"  I really did say that. To this day, I still can't believe that came out of my mouth.  It was a frantic thoughtless statement, not meant to be funny at all, but has ended up being a joke over the years that everyone, including Andrea, has been able to laugh at.

She never developed Wilm's tumor and was progressively tested for it throughout her childhood. Her cataracts still haven't gotten worse and her glaucoma pressure hasn't altered. Her visual acuity has gotten only slightly worse. Now that she knows letters and how to read, we know for a fact she definitely canNOT see that giant "E" at the top of the eye chart.  Yes, she has learned to read and write just fine, as well. She wouldn't have been able to attend public school all those years, if she hadn't. She has no retardation of any kind, nor does she have any type of ataxia. She thinks just like you and me, and can walk a straight line without falling over.  I'm pretty sure she is smarter than I am, if I'm to be honest. At least, that's what her SAT scores say.

She has developed into quite the gorgeous young lady. Her nystagmus has improved dramatically. The only time her eyes shake is when she is trying to focus on something extra hard. She sees better out of her right eye than she does her left eye, so if you were to watch her read or write you would notice her head tilt sideways so that one side of her face is closer to the paper than the other. If she is watching TV, we clear a spot out in front of it and everyone watches around her. Her siblings, mostly her brothers, get irritated from time to time, but they are siblings. Siblings will be siblings, disabilities or not. Definitely something I have learned! I notice her head wobble a little tiny bit when she is trying to concentrate on a movie, but it isn't anything like it used to be. I can recall an incident when she was about 2 years old and she was sitting on the floor of the pediatrician's office waiting room playing with toys, and one of the little kids was staring at her. I always watched very closely, because I've always been afraid of her being bullied, teased, or taken advantage of, but I've tried not to be overprotective, as I know what harm that did to me as a child, rather than good. There were times, and still are, as a mom, however, where it is hard to bite your tongue or hold back when something happens. This was one of those moments. This child sitting next to her looked straight in my face and said, "Why is she looking all crazy like that?", because her eyes were moving very rapidly as she tried to focus on what she was playing with.

Rationale flies completely out the window. Of course I know that this child has no idea what he is saying and did not mean anything harmful at all by the comment. They appeared to be practically the same age; but, my mouth acted way faster than my mind did and I looked straight at the mom and said, "You better grab your child before I do." Ouch. I instantly apologized once the blood rushed back out of my head and she was very understanding, but it was most certainly a lesson for me on how to react to things that were inevitably going to happen. Lesson learned: Don't do that.

Andrea is still strong-willed and courageous. She is intelligent and beautiful. She loves horses, and when I say loves horses, I mean she LOVES horses. We had a horse, named Jax.

Jax is still at the farm where my ex-fiance lives. Unfortunately, since we are not currently together, it means my daughter also lost a dear means of therapy... Jax. He keeps telling me that he is going to get rid of Jax, but always goes back to "I don't know if I'm really going to do that."  The reasons are never-ending and constantly change, and I'll leave it at that. It's a painful situation all around. I wish I could give my daughter the world. I had given her a little piece of it, this beautiful animal that I love so much, as well, and so much has been ripped away from us because people are just mean sometimes.  She is now training for a guide dog and use of a blind cane.  She knows there is a good chance she will have to depend on one, the other, or both completely in the future.  So far, she is doing very well with the cane. The cane will determine whether she can move on to the dog or not, which is something she strongly desires.

Words could never be adequate to express my love for Andrea and how proud I am of her. I'm not just a proud mother, I am PROUD. She is my inspiration. She is a lot like me with her emotions and takes things to heart; something I didn't fully realize until recently. She holds a lot in. She feels misunderstood on the inside sometimes, but still gives all she has on the outside. She is constantly doing things for other people. She loves taking care of children. She graduated from high school this year and just started college.

TAKE THAT, DOCTORS!!
She studied with dual enrollment during that last part of high school, so she already has some college done. Her original goal was to go into criminal justice, specifically crime scene investigation and forensics; however, after talking about it a long while, she sadly came to the conclusion that she won't be able to pursue that field. Not necessarily because she wouldn't be good at it - she took a CSI class at Seminole State College and aced it! Unfortunately, if she were ever called as a forensic witness for any type of crime, her eyesight would always be called into question, and the reality of the situation is that it would most likely work against her every single time; even if she was right. That's the way society is. She understands that.

She wants to be able to help others. The only thing that she has not been able to do, that the doctors WERE right about, is that she cannot drive a car. She simply does not, and will never, have the visual acuity and/or depth perception to drive a motor vehicle. I have been asked many times if there is a surgery that could correct her vision. In short; no.  Nothing developed correctly or completely. You can't really fix what wasn't there to begin with. The only thing that would work is complete eye transplants, and I can't honestly say we've gone quite that far into looking at something so extensive, and expensive, as a solution.  Not being able to get a driver's license when her friends were all getting theirs is probably one of the only times she ever really let it hit her, "Hey, I can't do this."  And man, did it hurt me to see her hurt! What mainly hurts her is the fact that she feels like she can't help other people as much as they have helped her. That alone tells me something about her heart.

I'm not sure she has completely decided on her change of major yet, but I do know she wants to work with horses during part of her life. It pains me that we cannot see Jax, and I'm trying to figure out something for her.  Until I am able to get back up onto my own two feet again, it's going to be hard to help her.  She wants a little more independence and would love for the two of us to have a place together. I am doing everything I can to make that happen, although right now I feel like I am running as fast as I can and going absolutely nowhere.  Yet, we cling to hope.

The other part, helping people.  Interestingly, her other love is ASL: American Sign Language, and she does it beautifully!  She would love to interpret for people one day. She has such a passion for people. For all people, yes, but especially for children, teenagers, and adults who are considered a little less than perfect in a doctor's eyes. The people that get looked upon as incomplete, messed up, not whole, or otherwise disabled, physically or mentally.  She has more compassion in her heart than most people I've known in my lifetime to have in their pinky toe.  I want to share a song she did recently in ASL. The song is by Julie Durden and it's called "Perfect That Way."  I'm sharing my daughter with you in this video.  Please meet her with a smile.  She's perfect to me.

She was born a little less than perfect
at least in that doctor's eyes
he said that she'll be different
much more than you ever realized

that girl grew up not knowing
the sound of her mama's voice
God's gift to her was silence
in a world so full of noise

and she sings with her smile
and talks with her hands
she listens with her heart
so she always understands

she believes there's more to life
than the sounds that it makes

she's perfect that way

shes got a sign for the thunder
one for the wind and the rain
she's the kind that keeps you laughing
and the first to see your pain

and she sings with her smile
and talks with her hands
she listens with her heart
so she always understands

she believes there's more to life
than the sounds that it makes

she's perfect that way