Saturday, January 14, 2012

Growing up with ABS (Amniotic Band Syndrome)

     Today is my 35th birthday.  So I decided to write a new blog all about me!  LOL
Me at 1 month old

     35 years ago I blessed this world with my craziness.  I was born a cold January night in Delta, Colorado to Linda and Arla Wayne Rule.  Mom said that on the way to the hospital, her car died many times but never stopped rolling.  When I was born the doctors noticed that I had a birth defect to my left leg.  I was born with Amniotic Band Syndrome (ABS) also known as Streeter Dysplasia.

     Now ABS is an uncommon, congenital fetal abnormality with multiple disfiguring and disabling manifestations. That happens to either gender in 1:1200 to 1:1500 births.  Prenatal risk factors associated with amniotic band syndrome include prematurity (<37 weeks), low birth weight (<2500 g), maternal illness (during pregnancy), maternal drug exposure and maternal hemorrhage/trauma. Attempted abortion in the first trimester is also a highly associated finding.

     Abnormalities encountered routinely with ABS include webbing of the fingers or toes, progressive lymphedema (swelling), clubfoot, stunted growth of the small bones in the fingers and toes and limb length discrepancy. Less common findings include: pseudarthrosis, metatarsus adductus, peripheral nerve palsy, dystrophic nails, postnatal gangrene, cleft lip and palate, skin-tube pedicles, dislocated hip visceral body wall malformations and eccentric craniofacial synostosis defects.
Grandma and I watching the squirrels from the hotel room in Denver, while waiting to get my prosthetic leg.

     I ended up with webbed fingers on both hands, a clubfoot of my left leg so severe that the doctors had to amputate it an hour later, and a band around my right ankle that didn't connect.  After the surgery to remove 1/4 of my left leg, I spent 10 days in the NICU at St. Mary's Hospital in Grand Junction, Colorado.  Afterwards mom brought me home, and I was trouble. *snicker, snicker*
Me trying to walk without a prosthetic leg.
     My family never held me back from doing anything I wanted.  They always encouraged me to try everything.  From using roller skates with only one leg, skateboarding, riding a bike or motorcycle, horseback riding, swimming in any form of water, rock climbing and climbing trees, to playing softball and showing dairy cows on crutches for 4-H.

Me teething on a corncob, being held by my Auntie Cindy





     Growing up I had my share of bullies thinking that they could take advantage of me.  But soon they learned that wasn't so and I was going to stand up to them and not back down.  In kindergarten Leona Whitecloud decided that she was going to shove my face into the sandpit and take off running.  So I just took off my leg and threw it at her, hitting her in the back and knocking her down.  We both got into trouble that day, but from that day on we have been friends.

     I never had a date while growing up until I was in high school.  But back when all the girls and boys where dating each other in middle school, I sure had low self-esteem and believed that the ONLY reason I didn't have a boyfriend was do to the fact I had an artificial leg, and no boy wanted to date a girl like me.

My first grade picture

My Eighth grade picture

My Senior prom picture

     Mom always knew where I was, she just had to look for the leg and I wasn't to far away.  When I wasn't running around with it on,  I was probably either climbing trees or swimming around in water with it off.
Sonya and I playing in the ditch at my grandparent's farm.
I always love playing practical jokes on people who didn't know that I have a prosthetic leg.  My Uncle Gene and I got a boy named, Justin, really good.
     Gene convinced Justin that I liked to be spun around by my feet really fast, and that he had to pull on my legs really hard to get me off the ground.  So I had my leg unstrapped and was sitting on the grass waiting for him to "spin" me.  When Justin grabbed my leg and yanked, off it popped.  Poor Justin, his eyes nearly popped outta his head and his jaw hit the ground.  This boy was of Hispanic descent and had a very dark tan at the time.  He turned sheet white, that's how badly he had been scared.  Gene and I nearly peed ourselves from laughing so hard.
Me (2yrs), Uncle Gene (5 1/2yrs) and Sonya (1yrs)


By the time I had reached high school, I was convinced that I was never going to find myself a boyfriend.  Until Leona called me one night and asked if I would go on a double date with her and her boyfriend.  I asked my mom if it was ok and she said as long as I had my chores done I could go.
So I went on my first date on June 28, 1991 to the Egyptian theatre, where we watched Backdraft.
      That night I was so nervous.  Leona, her boyfriend and Donald picked me up at my house and we went to the Egytpian theatre.  I didn't really pay to much attention to the movie screen.  I hoped that he liked me and that he would ask to see me again.
Well he sure did, and here we are 17.5 yrs, 3 kiddos later we are still together.
My kids have grown up knowing that their momma is different, for how many momma's you know that can say, "Don't make me take my leg off and beat ya with it!"  And true mean those words.

As they grew up, I have been their show and tell.  I have visited many kindergarten, first grade and second grade classes to allow my children teach their classmates and friends just how special their mommy is.
They aren't ashamed of me, but are very proud to call me mom.  And I am very honored to be their mom, for in the future I know they can accomplish anything and will meet every challenge head on.
Each of my pregnancies with my kids have been different, except for one thing.  Around the 6th month of pregnancy, my prosthesis no longer fit properly due to weight gain and swelling, so I had to adapt with crutches or crawling around the house.
I am lucky to have a very loving, supportive nuclear family.  A family that taught me that I can do anything I set my heart on.  They never told me No or that I can't do it.  But they told me to try and was there without a "I told you so" when I failed.
Thank you all for the first 35yrs of my life.  And I can't wait for the next 35yrs to begin.
Love ya all!

No comments:

Post a Comment