About Me

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I am a below knee amputee. More importantly, I am also Mommy to two boys, a very active 10 year old (Robby) and an mischievous toddler (Timmy). I have learned that being a parent with a disability can create some unusual and sometimes humorous situations. This blogger is available for hire! Let's talk and learn how a blog can expand your business.

Friday, October 19, 2012

Growing Pains

Robby is flourishing in school. Each day I pick him up and he proudly shows me the new words that have been added to his vocabulary ring. I am amazed at how much he has learned in just six weeks!

It has taken awhile and more than a few growing pains, but we are both acclimating to our new schedule. I still miss him while he's away, but I have to admit that the hours between dropping him off and when I pick him up pass quickly. It's been nice being able to work in a quiet house. I get so much more accomplished when I'm not constantly interrupted for a snack, a cartoon or to play Legos. 

Slowly the morning "I don't want to go to school" dramatics have faded. It took me several weeks to realize that the treats I was making to surprise him when he got home from school were causing much of his angst. Robby loves baking me with me. Instead of seeing cookies and cupcakes on the counter as a special treat, he was seeing that I was baking and having fun without him. As soon as I promised that I do nothing fun while he is at school and explained that all I do is work, the going to school hysterics evaporated.

In fact, he is adjusting so well to school that I am having trouble transitioning to the emerging "big boy" mentality. Yesterday, when I dropped him off in his classroom, Robby pulled away when I tried to kiss him goodbye. Instead of our usual embrace, he pulled me into the corner and asked me to not kiss him in front of his friends.

I'm not too proud to admit that his request left me feeling deflated. I drove home and fought back tears as I tried to grasp that my little boy is growing up. I realize that it is normal and expected that he will separate from me. That being said, I don't have to be happy about it!

Thursday, October 18, 2012

Amputee Caste System

Sometimes I find it difficult to define the "amputee culture." Losing my limb not only resulted in my using a prosthetic, but also included membership into an amazing club. It didn't take long for me to realize that I was now among a group of  strong, supportive and slightly persnickety survivors.

Amputees have their own lingo. Only an amputee can casually complain that "my darn leg broke again" without setting off alarms about impending emergency room visits. Referring to a prosthetic fit as a "bad leg day" requires no further explanation, and we all know the sudden onset of vulnerability that occurs when we cannot wear our devices.

Eavesdropping on a group of amputees, you will hear jokes about limps and limbs. To make it clear, and to answer an often awkward question to broach, it is okay for us to make light of the disability but not for others to do so. Only a fellow amputee friend can refer to my gait as a "gimp" or "hobble." Hearing those descriptions from anybody else causes me to become defensive and angry.

The amputee culture is an odd mixture of camaraderie and hierarchy. There is a definitive, yet often unspoken, self-imposed caste system depending upon the level of amputation. Many newbies are unaware of their place within the continuum until they are summarily "put in their place" by another amputee.

I was shocked the first time my amputation was referred to as a "paper cut." On the disability ladder I am on one of the lowest rungs, slightly above those missing toes and partial fingers.  In terms of living with limb loss, missing my left foot is about as easy as it gets!

Experience has taught me never to complain about my prosthetic or amputation in the presence of a more involved amputee. Although I have my own issues, I recognize that I have it much easier than many of my amputee friends. Sometimes it is easier to smile and conform than to try to buck a caste system that seems to be so ingrained within the amputee community.

Wednesday, October 17, 2012

My Friend Vashni

I am exceedingly grateful to report that my cancer scans have been read, and I have been declared cancer free! With the memories of chemotherapy and radiation never far away, my heart sings every time I hear the "all clear" from my doctors. It doesn't matter how many years I've been cancer-free, I will always be haunted by the fears of a recurrence.

I don't talk much about my cancer experience primarily because it is a part of my life I wish to forget. Waiting for my test results, coupled with some distressing news about a friend, the dreaded "c" word has been making an ominous presence in our home. As I am celebrating being cancer free, my friend is currently losing her battle with the same cancer that I fought.

When Vashni was diagnosed she reached out to me and I relayed my story. I told her in blunt terms what to expect during chemotherapy and radiation. We talked about the side effects and even joked as many of my predictions came to fruition.  We were so similar that I expected her disease to respond as mine did to the treatment.  About three months after her diagnosis, it became clear that she was battling a completely different beast.

My cancer did not spread; Vashni's spread to her liver. During the past year she endured grueling chemotherapy, painful procedures and debilitating clinical trials in an attempt to beat those horrendous cells. Yesterday I learned that hospice has been called and that her parents have taken up residence in her home to be with their daughter and her husband during this time. 

The news of hospice involvement shook me to my core. I sat in my prosthetist's office and began to cry.  My heart breaks for Vashni, her family and everybody who loves her. When she learned of her diagnosis, I promised her that she would be okay. She was understandably scared, but I knew in my heart that she would beat the same disease that I beat. Now she is dying. It wasn't supposed to be this way!

Knowing that my friend is losing her battle with cancer, I feel oddly guilty about rejoicing in my being declared healthy. Her struggles have reminded me that cancer does not discriminate, and that good health can never be assumed. I owe it to everybody who has lost the battle with cancer to remain vigilant about my screenings.

In honor of Vashni and to celebrate my cancer-free status, I have decided to participate in the National Race to End Women's Cancers next month. I can't think of a better way to honor this moment than to try to raise money to eradicate this horrible disease. I will be walking/ jogging with pride, knowing that I have beaten cancer and that I am representing Vashni, somebody with an extraordinary strength and loving character. 

Tuesday, October 16, 2012

Robot School!

Saturday morning, before the reunion preparations began, I took Robby to the much anticipated Lego Robotics class. His teacher highly recommended that Robby attending this course because he gravitates towards the Lego table at every opportunity. Combining robots with Legos seemed like a surefire fit for my little builder!

Since Robby was in the youngest class, my attendance was mandatory, not that I would have left him I had the opportunity. I love watching Robby learn and his enthusiasm about this class was contagious. My mind began to swirl with the possibilities at Christmas as he excitedly began to build with the colorful little plastic blocks and bits.

At the beginning the class, Robby was given the choice of which robot he wanted to build first. With no hesitation he was emphatic that he build the "kicking leg" robot first. I overheard him tell his teacher that he "was going to be a prosthetist someday like Mr. Elliot and build Momom new legs. I should probably get started now." At this point my head was probably as big as the room.

Robby and his Lego teacher worked for nearly an 90 minutes constructing the kicking leg robot. Unlike when he builds at home, Robby demonstrated an uncanny amount of patience as he actually followed the instructions (typically they are tossed to the side and ignored). When he became frustrated he asked for a moment to take some calm down breathes, and then he resumed working on his project. By the time it was complete, we were all anxious to see if it worked.

Robby proudly hooked up his robot to the test computer. I was probably as excited as he when his robot kicked on command. I wish we could have kept his robot but, being that it was made of Legos which were needed for the afternoon project, Robby's first leg was dismantled before lunch. Of course, not before I got a picture and a video!

After lunch Robby returned to the classroom to begin working on his second project. As instructed, he built a spinner and a spinning machine. When hooked up to the computer, the little Lego top took off spinning around the table. After his project was correctly demonstrated, he was given his final test.

The evaluator handed Robby a blank sheet of paper and asked him to figure out a way to keep the top spinning only on that surface. I knew that Robby needed to change the size of the gears within the contraption, but I wasn't sure if he knew how to achieve this goal. With an unexplained burst of confidence, Robby took the sheet of paper and told the teacher that her test was "easy peasy" and promised to be back within a few minutes. I was sure we were in for a few more hours of Lego class as he worked his way through the gear issue.

As Robby's Lego classmates began to tinker with their spinners, Robby began to play with the extra Legos in the box. His teacher reminded him of the task and told him that he could play after he passed the test. He looked up and smiled and said, "I'm not playing, I'm passing my test."

It didn't take me long to figure out what Robby was building. While all of his classmates were struggling with the gears and motors, Robby was happily building a Lego border around the sheet of paper. He finished his wall in about three minutes, and called the Evaluator to view his project. 

Before he unveiled his Lego wall, he asked his teacher, "So in order to pass this Lego class all I need to do is keep the spinner on the paper, right?" She smiled and said yes. He proudly took out his wall and put it on top of the paper. He turned on the spinner and delighted in watching it bounce off of the border he created.

The Evaluator was dumbstruck by his solution. She began to talk about changing the gears when Robby's Lego teacher interrupted and reminded her of the objective. Robby, without a doubt, met the goal that he was given.  She agreed that he thought outside of the box and he passed the final test! 

My little Lego engineer was so proud as he skipped out of the room. In the car he confided, "Momom, I think I was supposed to change the gears. But that seemed like a lot of work and trouble because I would have to take the spinner apart. Was I cheating by building the wall? I thought it was a good idea."  I promised him that he was not cheating because he had solved the problem. He proved that sometimes the simplest solution is the best. I can't wait to see what he creates next time!

Monday, October 15, 2012

High School Reunion

After much internal debate and in spite of high anxiety, Saturday night I conquered a looming fear. I didn't scale a mountain or jump out of a plane, but for me the accomplishment was nearly as grand. I gathered up all my courage and proudly walked into my 20 year high school reunion.

High school was not an easy time for me. I wasn't considered a nerd or a geek; those labels would have been a promotion. I was invisible.

I was the girl who looked familiar yet nobody really knew. I never had a date, never attended a dance, and I was not invited to parties. My Mom never worried about me being tempted by peer pressure. I had no friends to sway me to experiment to break rules. Needless to say, I never got into trouble!

During my freshman year I became ill. What we thought was a flu turned into what was conjectured to be mono. I'll spare all of the details, but I remained sick until my Junior year. By the time I did return in a full-time capacity, friendships and the peer hierarchy had been established. My self-esteem had been shattered throughout my medical ordeal, leaving me a shell of the person that I was when I first became sick.

In retrospect it's easy to see why I didn't belong to a peer group. Between doctor visits and hospital stays, my priorities had become different than those of the average teenager. I had lost the ability to relate to my classmates, and I didn't know how to find a common ground. 

Instead of trying to fit in, I retreated. I became uncomfortably shy and reserved. I was miserable throughout my senior year. I eagerly anticipated my graduation day not because it was an opportunity to celebrate my accomplishments, but because I knew that once I left, I would be liberated and free to be myself.

Typically I have ignored the invitations to my high school reunions. Until this year, I had no interest in seeing anybody from that time of my life. However, this time I felt the need to find closure. Maybe I'm finally becoming secure enough in myself to confront the demons of my past.

Saturday night, I was shaking as I walked into the reunion. Scott sensed my anxiety and headed straight for the bar, providing me with a steady supply of liquid courage. I can't say that I was comfortable during the evening, but I'm also not sure that comfort was an achievable goal. I enjoyed reconnecting and learning about everybody. I was reminded during the evening that in spite of losing my leg, I have a wonderful life!

I'm glad that I went to the reunion. Not only did I get to see some people I have wondered about, I was able to conquer my adolescent insecurities. I realized that everybody blossoms at a different time in life. High school is simply a snapshot of four awkward years, and I am so much more than that shy teenage girl with the frizzy perm. I am not the same person I was back in 1992. I have aged well.