The Amanda Project

This is an attempt to chronicle the life of a person who will never know or even have a hint of how she has impacted me, my wife, her little sister or those who have crossed her path. She leads a fairly simple life, from her perspective it is simple anyway. Her concerns are that of most non-verbal toddlers. I suppose at a distance one could discribe her life in just a few basic catagories. Food, play, affection, and sleep. Without knowing her you could sum her up just about like that. But you would miss out on finding the treasure of her personality.

Amanda was born on November 11, 1983 in the ordinary way. Head first, feet last. That was the last of her ordinary moments. Once out into the world it took the doctor a little bit to get her to breath. Karen(my wife) and Amanda were rushed out of the birthing room and I did not get to see them again for about an hour. When I did get to see them Karen had the typicle tubes in her arm and was holding Amanda, who was very quiet except for a few faint chirps once in a while.

Amanda has a rare genetic disorder called "cardio-facio-cutanious" or "CFC". So far about 200 people have this disorder or mutation on the planet. They all have various degrees of heart defects from very serious to mild. Amanda has a very strond heart with a mild murmur. They all have varying degrees of mental retardation. Amanda seems to be stuck at the two year old point of life. At the age of twenty two she keeps things interesting around the house. She has four skin conditions and cannot sweat. She has very sparse hair on her head and no hair any where else. There are other details concerning CFC, but these are what I wish to mention.

I guess the idea of this is to say there is more to Amanda than her disorder. She has very rough skin but a gentle spirit. She is profoundly mentaly delayed but she has a very profound personality. And, yes she has a heart defect, but her heart is as big as the whole out doors. She can't talk but she speaks volumes. And while she is sensitive to heat, she will warm up to just about anyone.

If you had the opportunity to spend a few months with her you would learn of her passion for babies. She has several baby dolls that she holds and rocks and hugs and kisses. She wraps them up to keep them warm and lately we see her pretending they are walking. People at church used to try to let her hold real babies but this turned out to be a bad idea as she gets so excited that she hugs too hard and the baby starts to cry.

You would also notice that she loves to play "pat-a-cake". She never tires of this, ever. She also has a joke that she plays on me where she plays pat-a-cake with one of her feet and one of my hands. Then she laughs. She has been playing this joke for several years now and she still thinks it's funny.

She loves to watch TV, especially if there are babies on. She also enjoys a good musical. Her current favorite is "The Sound of Music". Her all time favorite movie is "O Brother, Where Art Thou?". We don't know exactly it is she likes about that film, we just know she gets excited when she sees the DVD case and sits attentivley thru the whole movie.

When she was smaller, we would take her to the park on days when the temprature was low enough. She enjoyed walking around, although she preferred being on pavement. As she has grown in size, she has become less stable so that she can no longer walk on grass.

At this point of Amanda's life she does not get out of the house much. When we do take her some place, it is a big event for her. We ask her if she wants to go and she charges for the door. If we take her to a store, she has to go by the toy section and we let her pick out a new baby. It may seem like we indulge her a bit much but there is so very little in her life that she gets pleasure from and a baby doll is a small matter.

Amanda sleeps in a large hospital type crib that is seven feet tall. This is to keep her from roaming the house should she wake up in the middle of the night and injure herself. Her room is a constant mess as you can never outrun a hundred thirty pound two year old's ability to drag stuff out.

This is just a brief run down of her life, some of the things she likes and some of her attitudes. But it tells you very little about what she means to my wife and myself. At a glance, anyone with a basic understanding of healthy family dynamics would recognize our family as dysfunctional. Everything we do revolves around Amanda and what she can our can't do, and even what she doesn't want to do. We no longer eat out as a family. We no longer go to parks or even walks since it is usually to hot for her.

We usually don't take Amanda to stores as she gets frustrated and starts screaming. She can walk but not very far. She moves so inefficiantly that she tires out easily, so we use a wheel chair. She likes her wheel chair but we have to keep moving or she throws a fit. This makes going to the store just to get out of the house very difficult as a family.

To think of Amanda in terms of any adversity she brings to our family would be very tempting. Usually people say things like "I don't know how you do it". For a long time I thought people said things like that because they didn't know what to say, but now I think it is because they cannot see past the problems a person like Amanda naturaly bring to a complex relationship like a family.

The "way we do it", I guess, is that we accept what we cannot change about Amanda. Not only do we accept it, we actually embrace it. The idea is that we are going to have this as a part of our lives. We can hate it and be miserable, or love her unique challenges and be happy. Either way, we will have to deal with it. The only question is do we want to be happy or miserable. That sounds almost too simple, doesn't it? To choose between misery or happiness as a mode of opperation but I think most of the adversity we go through would be more survivable if we chose to enjoy going through it.