The Simplest Task

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Status: Finished  |  Genre: Non-Fiction  |  House: Booksie Classic
This is a story written about the pain and overcoming obstacles my son had endured while ill with Sydenhams Chorea Disease.

Submitted: April 27, 2007

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Submitted: April 27, 2007

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"Pull the string tightly.Make bunny ears with each side of  the string.  Wrap the ears around each other, stick one ear through the hole, and pull tight."  Tying shoes has become such a habit for most of us adults that we never think about how it is actually done.Imagine a 7-year-old boy who had been tying his own shoes for three years having to relearn these simple steps adults take for granted .  
My son, Zachary, was only 7 years old and full of life.  He was very intelligent for his age.  Reading at a eighth-grade level and doing sixth-grade math when he was in first grade, teachers placed Zachary in the gifted child program at school.  Reading was among his favorite subjects, his father taught him how to read Harry Potter the previous summer.  Although Zachary was very  bright, he still made time for common boy activities such as football, building forts, and playing with trucks.  
Early in May 2003, school was almost out for the summer.  I bought Zachary a new bat and glove for his birthday.  He was so excited to play little league baseball during his vacation.  One evening he came to me complaining of a sore throat and being very sleepy.  Thinking it was just a virus going around at school, I gave him some medicine and put him to bed.  The next morning his temperature had risen to 103.4.  I instantly knew this was more than just a virus (mother's instinct) and quickly took him the emergency room.  I gave him Tylenol to bring down his fever before we left for the hospital.  His temperature went down slightly by the time we arrived.  
After the doctor examined Zachary and was able to bring his fever down, the doctor shrugged his shoulders.With a snobby tone, the doctor explained it was nothing more than a "bug"  and told me I shouldn't over react to minor illnesses and take the time away from real emergencies.  I was outraged with his tone and rudeness, but started thinking that maybe I over reacted.  Over the next few days, Zachary was feeling better but he still didn't seem right to me.  
Over the next two weeks, I kept a close eye on him.  I felt there was something  wrong but I couldn't pinpoint what it was.  Zachary's father noticed he had become paler, and his eyes looked glassy.  We decided to watch him play outside with Emily, his younger sister.  I was scared when I realized Zachary was twitching his arms in jerky motions and was unable to hold his head still.  His father asked why he was doing the movements and Zachary didn't realize he was even twitching.  Immediately we took him to a different hospital emergency room, where they were very helpful and genuinely concerned.  Test after test the doctor sat down and let out a long sigh.  I began to cry as I hugged my son close.  My husband, Zachary's father, squeezed my hand as he was trying to be strong.  One look at the doctors' sad and tired eyes, I knew it was something serious.  The doctor told us Zachary had a strep throat infection that was untreated, which lead to rheumatic fever.  From the rheumatic fever he developed a more serious health issue, Sydenham's Chorea Disease.  This disease was causing Zachary's motor skills to shut down slowly.  Fluid was starting to build up in his joints which would become very painful.  I thought of the first doctor and how this disease could have been prevented if only he would have listened to me.  I was so angry, yet scared for my little boy.
School was over, and Zachary finished the year the best he could.  Sydenham's Chorea Disease is fairly rare, and most doctors have never treated anyone with it, especially around this area.  However, I was able to find valuable information that would help him.  Unable to get over-heated, overly stressed, and overly tired were just a few of the drawbacks.  Over the next few weeks Zachary's knees became so painful he was unable to walk.  His hands and fingers would not function properly.  He was unable to grasp a simple object such as a fork or spoon.  My husband and I had to feed him like a baby, dress him, and carry him from room to room.  His speech became slurred and hard to understand.  All of his motor skills were deteriorating one after the other.  This was the one of the hardest sights for me as a  parent to watch my child go through.  
Two months later, Zachary's motor skills started to come back.  His joints were feeling better, and he wanted to try walking again.  After not walking for that long of time, he wasn't quite able to get his legs to cooperate with what his mind wanted to do.  It took several days of teaching him to gain control of his balance by holding onto something first.  I explained each step of walking to him. "Slowly lift up your right foot while moving the leg forward and slightly lift the knee at the same time.  Then put your foot down and apply your body weight on that leg and do the same with the left leg."
Eating meals and drinking from a cup were no longer simple tasks either.  Not only did this disease affect Zachary's motor skills, it also affected his ability to remember how to do the tasks he once mastered.  Because his grasping technique was gone, from not using his muscles, he had to relearn how to use utensils as well. Picking up a fork was one of the most difficult tasks to relearn.  I instructed Zachary to, "pick up a fork or spoon by closing your thumb and pointer finger together on each side of the utensil.  Once you have the utensil in your fingers, move the fork so the handle is pointed up and tines and pointed down.  Make your hand into a loose fist, rest the fork on top of the fist, and place your thumb over the fork to hold it firmly."
My daughter would often say it was like having a new baby in the house.  This seemed to be a much harder task than teaching an infant for the first time.  Stress and frustration got the better of all of us, and there were times when we had to take short breaks and get out of the house.  Over the summer months, Zachary became stronger and more self-efficient.  He was able to overcome the obstacles of having to relearn the simple things in life learned as infants.  
Not being able to play baseball that summer was hard for Zachary.  He missed out on being a kid.  As a surprise one weekend, we took him to a Minnesota Twins game at the Metro Dome.  He was thrilled and excited as this was his first major league baseball game.  Kirby Puckett was signing autographs before the game, and I told Zachary I was going to get drinks for all of us.  Instead I asked Kirby to sign his card for Zachary.  I briefly explained Zachary's disappointment in not playing baseball that summer.  Kirby said to leave it to him and not to worry.  I got the card signed and surprised Zachary with it when I returned to my seat.  At the start of the game, Kirby stepped onto the mound with a microphone in hand.  He called Zachary to the field and asked him to pitch the first ball.  Zachary was ecstatic and started to cry as he was handed the ball.  He pitched the ball to home plate, and the crowd cheered.
Although Zachary had overcome the disease, he will always have side effects.  His reading and math skills dropped to below average, which he has worked very hard to become above average again.  He needs heart exams and blood tests every six months as he has developed a heart murmur and will need to be on prevention medicine to prevent a relapse until he is well into adulthood.
Zachary is a very brave and strong young man.  It has been a little over three years, and everyday he overcomes another hurdle he was once unable to accomplish.  He never lets his restrictions stand in his way of his favorite activities.  Our family has learned from this experience and have become much closer as a family.  I will never take the simplest tasks for granted again.  Life is too short.  I never realized how precious life is and how wonderful the smallest of tasks of everyday life is.  I was forced to slow down and think about the steps those tasks involve and to cherish each step of life.


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