Living Normal in a Different World
I was born in 1975 with a disability called Arthrogryposis Multiplex Congenita. At first, they weren't sure what it was. I had club feet (feet that are turned in or out at the ankle). My mother tells me that on one foot, my ankle was so twisted that my big toe touched the back of my leg, just below my knee. There are no pictures of this, so it is hard for me to imagine. AMC can affect people in many, many ways. Some people have few problems, others are severely affected. I am considered a mild case. Anyway, AMC basically means that one was born with multiple joint contractures. By this I mean that a person's joint (or joints), knees, elbows, ankles, wrists, etc., are set in a fixed position. My knees were bent. I had several surgeries as a baby to straighten out my legs and to lengthen ligaments.
The doctors originally told my parents I would never walk, I'd be in a wheelchair. I did everything they said I wouldn't. I sat up...I crawled...I walked. I was 4 years old when I had my last surgery. I don't even remember them much. So, now I was walking and also approaching school age. My mother tried to get me into a special pre-school program that paired one handicapped child with one non-handicapped child. She sent in an application for me and got a letter back stating that I wasn't "handicapped enough" for the program. My mother then joined with other local mothers in a playgroup. When it came time for me to go to Kindergarten, the school system wanted me under the special education jurisdiction. My mother fought against this (I wasn't "handicapped enough" afterall)...and won. I went to Kindergarten just like all the other kids. They accepted me, I was one of them.
Elementary school was great. I had some great teachers that went above and beyond to include me in activities. I even took gym class. I played everything in gym, except basketball, but even then, I was the "official" whistle-blower. In soccer and kickball, I was the best kicker (there is power in crutches!!). When we played tag, rules were altered a little. To tag me, one had to either run backwards, hop on one foot, or some such other "difficulty". For baseball, someone ran for me, but boy, could I hit that ball!! The
kids in my class were great too. Granted, I was from a small town and only had about 12 kids in my class. But, they made sure I wasn't left out of anything and also protected me when other kids tried to pick on me and bully me around.
When I was in elementary school, mom signed me up for swimming lessons through Easter Seals. I love to swim. I was back in the program fall of 1999, until I got sick and had to quit. I was also in Girl Scouts all throughout elementary school. I did all the things my troop did. I loved to go camping with them. Most of my camping skills I learned from Girl Scouting. My husband and I love to go camping. When I was in third grade, I had also joined 4-H for horses. I loved horses and to be able to ride once a week was a dream. Someday I hope to have horses of my own. I miss riding so much.
Going into 7th grade was very scary. I was going to the high school. It was big, and more kids would be there. I was afraid I wouldn't be able to do it. All schools I've been to had stairs. I needed someone to always help me up and down stairs. I couldn't do it myself. But, I ended up making a lot of friends. Probably due to my "5 minute" rule. Teachers were told that I was allowed to leave class 5 minutes early and/or be 5 minutes late without punishment. This was so I'd have a chance to beat the crowds. This meant that someone would get to leave with me or be late with me. Of course, being a teenager, this came to many great advantages! Mom also
started my brother and I on a bowling league with her. Yes, I can bowl. They have a ramp for people in wheelchairs to put the ball on to roll it down, kind of like a marble game. Some people think that it's so easy because you can just "aim" the ramp. No, it's not like that at all. I used to do it like that and wasn't very good. Then one day, when we were at the bowling alley practicing, a professional bowler was watching us. He came over and taught me how to bowl using the aero-dynamics of the ball and the air flow over it. Sound complicated? It was, but I also was scoring better had more control over where I wanted the ball to go. I have many trophies from being on the league. And another thing my husband and I like to do.
One thing I hated about high school is that I lost my identity in a sense. There was another girl. She had spina bifida and came from a family that was "well-off" and spoiled her. She used her disability to it's fullest extent to get what she wanted. She operated on pity from others. It made me sick. I was so independent. Only a few teachers knew me. Other teachers just couldn't get past the crutches and "handicap" and put the other girl and me together as one person. And since she was more vocal and demanding about her "needs" and "problems", I was always called her name because that's who the teachers remembered. I was hardly "me". I was a good student, got decent grades. She was the opposite. The teachers that saw us as one person, never really gave me the challenges I needed because they thought I was her and wasn't able to do it. I hated it.
I was very social in high school. I had my large group of friends. We were a good bunch. I went to school dances, hung out at the mall and we had parties. I dated a little, but it was hard. In high school, boys are always looking at the outside, never the inside. I had 3 "official" boyfriends in high school. But I had a lot of special friends, one in particular who cared about me like no one else. We never dated because I was with someone else. Unfortunately, I wish I had dated him. He died my senior year of a brain tumor. But he was the best. He knew what it was like to overcome difficult obstacles in life.
While in high school, I took Spanish. I loved it. In my senior year, the Spanish classes were going to Spain. I wanted to go, but was so afraid to ask if it would be possible for me. I finally asked my teacher and she absolutely insisted!! I was so excited, and even more excited because six of my friends were going too. I was a little scared because I figured Europe wasn't as accessible as the States, but I wasn't going to let that ruin my once-in-a-lifetime chance. That was my best 10 days of high school.
I was involved in a lot of activities in high school, mostly with my friends. I was in the drama club and specialized in make-up. I love doing it. It has carried into my adulthood. I have worked in the local theater a few times. I did make-up for the play 1776. I had to turn a 26-year old man into Benjamin Franklin. It was quite a challenge, but what fun!!! I got to work with a latex wig to make this actor bald with gray hair. It was very different from high school drama! I also got to be stage manager for a little play, Sylvia, that my friend was directing. That was different too, but lots of fun. I was on the board of directors for the theater guild, but couldn't participate much because of my pregnancy.
I was also a part of the peer education group and adolescent issues council. Both groups worked on programs for the students that dealt with social issues. I belonged to the school magazine, and another group that paired an upperclassman with an incoming seventh-grader. That was so the adjustment into the high school would be smoother. The student could call us or get together and ask questions that they may have about coming to the high school. Of course, it was a program that the school started when I was a junior!
Graduating high school was another scary time. I was to be starting community college in the fall. Another new place, new people. But, it was easier. The building had elevators, so I was independent. I was also able to establish and keep my identity. I was "me" again!! I ended up getting a job as a cashier and got a car. I drive using hand controls. They are much like a motorcycle throttle. I turn the handle for gas and push it in for brakes. Very simple and quite a hit with my friends.
After 2 years, I transferred to a 4-year college, living on campus. I had to get a scooter to get around the campus, as it was too difficult to manage the distance just with my crutches. By this time, I wasn't too afraid to venture out to something new. My first 2 years of college had given me a new strength to be independent and outgoing. I joined a group in my first year there for people with disabilities. By my second year, I was Vice President, and my senior year, I was President. I graduated in 1998 with a bachelor's degree.
Also in 1998, my then-fiance and I, rented a ground floor apartment. The search was difficult. I needed first floor, but many apartments that said first floor had stairs leading up to a porch. But, we found an apartment that was ground level. In August, I married my high school sweetheart. I wore a beautiful, full-length dress. I had to make sure it wouldn't be too heavy or big so that I could still walk with my crutches. I did walk...down the aisle with my dad. I danced with my husband and my father. One of the best days of my life.
In April of 1999, we found out I was pregnant. I was due December 10th. We were so excited, but it also brought about some concerns. How will I fare with a pregnancy? Will the baby be affected by AMC? Will I be able to continue working or even just walking when I really start to gain weight? It was going to be trial-and-error. I ended up so sick, but not because of AMC. I had mornig sickness right into my 5th month. I had to quit my job. Then I had a few healthy months. I was walking around right into my 8th month, then I got suddenly sick. I ended up in the hospital for almost a week with pneumonia and a celluitis infection in my leg. I came home the week before Thanksgiving and had to be on bedrest and have heparin shots twice a day.
On December 1, at 39 weeks of pregnancy, I gave birth to Daniel, a beautiful, healthy baby boy. He weighed in at 7lbs. 6ozs. and 19 3/4 inches long. Everything was okay. The labor and delivery went smoothly. I gave birth naturally, with no pain medication. I was in labor for about 10 hours. It wasn't difficult for me. In fact, the labor and delivery were the easiest parts of being pregnant for me.
Being a new mom had it's challenges, but I don't think anything was really out of the ordinary. I used a stroller to move him around. He was a happy healthy baby! By March of 2001, we found out I was expecting again. This time around, I was diagnosed with gestational diabetes. Luckily, I was able to control it by diet. I was due November 3. Once again, I was up and around into my 8th month. I started having problems with my blood pressure (preeclampsia) near the end and they decided to induce my labor November 1. At 3:52 p.m., 23 months to the day, the hour and almost the minute after the birth of our son, our daughter, Kelsey was born. She was a healthy 8 lbs. 3 3/4 ozs. and 21 inches. Her birth went smoothly and life with two children just fell into place.
In 2002, we bought a house. It's a small 3-bedroom ranch, and my father built a ramp that goes up onto the deck so I can get in and out. We've been busy remodeling here and there. In 2003, we went on a second honeymoon to celebrate our 5th wedding anniversary. We had a great time. But, imagine our surprise when we found out I was pregnant again!
Six months into this pregnancy, I ended up in the hospital with another celluitis infection. Thankfully, they sent me home after a few days. This pregnancy went on normally. I was due May 30th. In the early hours of May 18th (3:33 a.m., to be exact), my water broke. I
had been in labor on and off for weeks now. We got to the hospital and I labored. And labored... and labored some more. May 18th came and went, no baby. Finally, at 1:40 a.m. on May 19th, Evelyn Rose came into the world. I was so tired, and so hungry! And she just fit right in with the rest of us.
Motherhood with a disability surprisingly easy for me. But, then again, I know no other way of life. Many ask me how I manage, and my question is, how do they manage? I just go along like everyone else and adapt things to ways I can manage. Then people ask me if there is anything I wish I could do. Yes, there are lots of things. I wish I could run... I wish I could carry my children in my arms... I wish I could walk, hand-in-hand, with my husband along the beach at the water's edge and feel the sand between my toes... I wish I could just go anywhere and not have to think about whether or not I'll be able to get in... I wish I could go grocery shopping by myself and carry the groceries in... All these little things that people usually take for granted, or even complain about. But, I try not to dwell on them and think about all the things I can do. I tell myself, if I wasn't born with AMC, I might not be where I'm at today, and I'm pretty happy with what I have.
So, as you can see, nothing stops me. I lead a decent life. If I run into a problem, I try to find a way to deal with it. My husband is a great help too and so is my family and friends. I think it is very important to have such a support group. My only problem is that I have too much pride. My husband gets upset with me because it's hard for me to admit when I need help. Things that other people take for granted I'm glad I can do. I can to household chores. I can drive. I can take care of my son.
If you have any questions, please feel free to ask. No question is "silly". Trust me, I've been asked a LOT of questions! I answer them all. A few examples...

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