Kristen

     

I guess I had a pretty typical childhood with some exceptions.  Here is what my mother has to say:

“Kristen was born 10:58am on April 5th, 1982 weighing 6lbs 1oz after a full term, non-eventful second pregnancy.  I was 33 at the time.  When she was first brought to me I noticed her skin was covered with little red dots.  The nurse told me it was from the pressure of the delivery and the fact that her skin was so fair.  Later I learned that this was petechiae and can be a sign of a congenital CMV infection.

She cried all the time and nothing consoled her.  At 8 weeks she had an inguinal hernia repair.  A week later her pediatrician, on a routine exam, found a grossly enlarged liver and spleen. She was admitted to Albert Einstein Hospital in the Bronx and after a liver biopsy we were given the diagnosis of CMV.  

She responded to spoken words by smiling but had little physical movement.  As time progressed I felt something was wrong because she was not holding up her head or attempting to roll over.  At 8 months of age she was diagnosed with a dislocated hip and was referred to Helen Hayes Hospital in West Haverstraw, NY, a local rehabilitation hospital, where she was evaluated as having the physical ability of a 3 month old.   She was placed in a Pavlik Harness to keep the hip in place and started physical and occupational therapy and responded quickly.  At age 16 months I was told that the Pavlik Harness did not do what had been hoped and she would need surgery to release the muscles and tendons.  Through all of this we still did not have a definitive diagnosis.

It was at Helen Hayes Hospital that we first met Dr. David Roye.  Over the course of the next 6 years of rehab she had 2 additional hip surgeries (one at age 4 for femoral osteomoties and one at age 6 to remove hardware) and continual physical and occupational therapy.  There is a day I will never forget.  At the age of 2 ½ I had her at clinic waiting to see Dr. Roye.  She was at the point where she would “cruise” furniture and loved to push things.  She wanted her stroller so I stood her down on the floor and she took her first steps!  I cried because I had my doubts as to whether she would ever be able to walk.  She fell down a lot but she always got up again.” 

My brother, Peter, is 4 ½ years older than me, and I went through a phase of wanting to do whatever he did. That’s why I played several years of Little League baseball (mostly T-Ball), until it became very clear that sports were not my thing. I was in Brownies for a year, because Peter was in Cub Scouts. That also didn’t last.  It kind of took a while for me to realize that trying to fit in with “normal” kids wasn’t going to work. I just had to accept the hand I was dealt and try to deal with it as best I could. 

School was always a challenge for me. Not so much academically, although I struggled in math quite a bit. The worst for me was definitely gym. It was always frustrating to see other kids do things like make a jump-shot, or hit a home run, and think, “Why can’t I do that?” But luckily, I found my strengths in the classroom, and that helped even things out. I was always very good in language arts and reading. So whenever I would feel tempted to get discouraged over some of the things I couldn’t do, I would remind myself that I had talents, just in other areas. 

In first grade, I was put in a Special Ed. class for most of the day, and I would only join my peers for things like art, music and gym. I don’t think I really should have been kept separate from the others because it made me feel like an outsider. I never had a chance to get to know my classmates all that much. Plus the fact that my Special Ed. class was doing reading that was far below my abilities. I could easily have kept up with a regular first grade class, in that area at least.

After that year, I was placed in a regular classroom, but was given special help, such as being able to sit close to the board, extra time for tests, etc. Most of my teachers were very willing to accommodate my needs. Things became even better in 4th grade, when I finally met with a teacher of the hearing impaired (due to the congenital CMV infection I am deaf in my left ear).  This teacher helped make sure all my teachers were aware of what my needs were, as well as helping me to stay organized, which was never an easy task! She basically stayed with me from then through high school. That was a great comfort to me when I moved from one grade to the next, knowing that I was already familiar with at least one of my teachers. 

For many teenagers, a driver’s license is a major achievement, offering independence and freedom from parental control. Unlike a lot of my peers, I never really felt any great need to learn to drive. I rode the bus to school and to my part-time job. Plus I had a number of nearby relatives who could offer rides in a pinch. So I never even got serious about getting behind the wheel until after high school. In retrospect, I wish I had acted sooner. From past experience with things like riding a bike, I already knew I would take longer to learn than most people. But because of my late start, I don’t have as much confidence in my abilities as I should, in spite of having my license (after six attempts at the road test!). 

When it was time to go to college I didn’t want to go far from home.  My parents and I were totally shocked when on senior awards day I was presented with a full scholarship to a local college that was literally “down the hill” from my high school!  I was fortunate in that the college that had a program for students with special needs, and I did receive a certain amount of accommodations there. Mostly I was given extra time for tests, or being able to type assignments rather than handwrite them. Initially, I planned to become a teacher, and possibly use my experiences to help other students in a similar situation to mine. When that didn’t work out, I changed my major to English, and managed to get a B.A., with a minor in psychology, thanks to all the education courses I took. 

Although I am working full time now, I am not sure what I ultimately want to do with my life. But my parents raised me to have a “can-do” attitude, and to focus on my abilities, rather than my disabilities. So whatever I end up doing, I’m sure it won’t be defined by my CMV. 

If anyone would like to get in touch with Mary Marino, here is her email address  mmarino53@yahoo.com

They live in New Jersey, USA.

     

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