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, June 11, 2010

Rice Krispie Treats

June 11, 1993, I was a wide-eyed naive teenager. I had completed my first year in college. I had just returned home for summer break and had resumed my summer employment, where I worked as a nanny for two wonderful young children. I loved life, and I felt invincible.

Seventeen years ago today, I was changed forever. This anniversary doesn't need to be circled on my calendar to be remembered. I don't set out to remember the anniversary. Every year it seems to sneak up on me and take me by surprise. I was driving home from my Mom's house yesterday when WHAMMO! I realized that tomorrow was June 11. Another year had passed.

Although I was hired only to watch Wesley and Alyson, neighborhood children often congregated at the house. The family had a pool and all of the friends loved to swim and play. I was a responsible babysitter and the neighborhood parents felt comfortable having their children under my supervision.

June 11 1993 was hot. The pool was open and, in addition to my two young charges, the two neighbor girls were swimming with us. Amanda was six and Rachel, her younger sister, was almost four. The radio was playing, the kids were splashing and jumping. Summer had arrived, and I knew it was going to be a good one!

Amanda and Rachel's mom came to visit while we were swimming. She made Rice Krispie treats for everybody. The details I remember from the day are vivid; I know that Billy Joel was playing on the radio and that the Rice Krispie treats were exceptionally thick.

I was chatting with the mom when she noticed Rachel climb out of the pool and lie down by the water. The little girl was just patting the top of the water and, to be honest, I didn't think much of it. The Mom was alarmed, and approached her daughter.

Everything happened so quickly from that point, but in my mind it still moves in a slow motion. I was told to call 911 for help. I ran into the kitchen where I picked up the receiver and dialed. I heard the operator answer, and I gave the address and requested help. I then heard the operator remark that it was a crank call, and the line was disconnected.

By the time I reset the line to dial again, the Mom had carried Rachel into the house. The little girl, still dripping wet, was placed onto the kitchen table. The Mom kept screaming, "Peggy. save my daughter. Don't let my little girl die. Please, Peggy, Please. Don't let her die." These words continue to haunt my dreams.

I took off her yellow life preserver and checked her vitals. There was no heart beat. I went on auto-pilot, shutting my brain off to the frantic screaming that was surrounding me. I started CPR.

At this point Rachel's playmates came into the house. I looked up and, between rescue breathes, screamed for them to leave. Little Alyson tried to talk, but I screamed at her to leave, and to get a neighbor to call for help. The kids went running away.

To this day I remain grateful that I had the sense to send the children away. I kept my wits about me and knew that they shouldn't see their friend receive CPR. Children are vulnerable and I hope that I spared them from the trauma of the incident.

CPR was continued until paramedics arrived. I am told it was only a few minutes, but it felt like an eternity. Rachel's little lips were blue, and her skin was cold. When I close my eyes I can still see her little Beauty and the Beast swimsuit against the blue and white checked tablecloth.

After she was taken away I phoned my employer. My mom came over to sit with me. I remember thinking that Rachel had to be okay. I couldn't fathom her not being okay. I did everything right, so I knew in my heart that she would be alright. Rachel, I knew in my very soul, was going to be just fine.

I found out that night that Rachel died. I felt like I had been knocked out. The pain was so strong that I didn't think I'd be able to breathe. How could she die? It just didn't seem possible.

I have experienced other losses in my life since this event, but nothing compares to the anguish I felt when Rachel died. This tragedy taught me that, although you can do everything right, sometimes bad stuff still happens. Until I heard that Rachel had passed away, I believed that if you prayed hard enough and wished long enough, the outcome would be good. It seems naive, but I suppose that I was.

The following weeks were a blur. The press learned of the disconnected call to 911 and an investigation was launched. I was interviewed by the television news, various newspapers and the state police. I have a scrapbook filled with articles written about the incident.

Some reporters doubted that I was disconnected, while some articles even insinuated that a call was never placed. I knew the truth, and my employer supported me. She helped me stand up for what I knew to be the truth. Eventually the 911 system was changed and a call back procedure was instituted. I find some solace that perhaps a tragedy has been avoided because I spoke out about what occurred.

As it turns out, nothing could have saved little Rachel. I learned later that evening that she had a heart defect and had already survived open heart surgery. Her little heart just gave out. Although she appeared to be a healthy and strong little girl, she was a very sick child.

This anniversary used to hit me hard. I used to try to hide from the date, busying myself with chores and activities. Despite my efforts, I was never able to forget.

With time and maturity, I now view the anniversary in a new light. Intellectually, I no longer feel guilt about Rachel dying. Emotionally, I think I will always fight the "what if" questions. I am always going to wish that I had done more, that I could have saved her. I have healed from the event, but I have been changed.

I no longer dwell on the anniversary, but I would be remiss if I didn't admit that it still hurts. I rarely talk about Rachel and what happened that afternoon. My mom and my friend Tammy are perhaps the only two people who realize how deeply I have been affected by the death. This blog is my first detailed account of that tragic day. Until today, I always felt safer keeping the memories bottled up and out of sight. It has been seventeen years, but I now feel comfortable enough to talk about the incident.

I was changed when Rachel died. I experienced the fragility of life, and how quickly everything can change. I learned that it is important to stand up for the truth even when you are faced with naysayers. I learned that some pain leaves scars that continue to ache from time to time.

Robby is the same age that Rachel was when she died. Rachel was a wonderfully sweet little girl. She loved to swim, play tag and eat sour patch candy. She would giggle when she gave hugs, and had a mischievous air. She would be 21 this year.

Today will be a difficult day. I am going to give Robby some extra hugs and kisses today. We're going to play outside with his sprinkler and play tag. I've decided that, in memory of Rachel, I'm going to make Rice Krispie treats with Robby. After all, they were her favorite.

Thursday, June 10, 2010

Questions I Didn't Know I Had

I woke up early yesterday morning to the smell of freshly brewed coffee and homemade blueberry muffins still steaming from the oven. My first inclination was to settle in and ready myself for a day of relaxation at my mom's. And then I opened my eyes and realized that I needed to chug a cup of coffee, gulp down a muffin and hit the road. I needed to be in Pittsburgh by 10:30, and it is nearly a four hour drive.

The drive to Pittsburgh was angst-ridden. The weather did not cooperate with my travel plans and fluctuated between drizzling and hard downpours. The drive was slow, wet and miserable. I was nervous about finding the hospital and the outcome of my appointments, which certainly didn't lend to my enjoying the trip.

After nearly four hours of driving to get to the hospital, I was forced to drive through the parking garage for another 15 minutes to find a spot. Finally, the car was parked and I was at the doctor's office. It was the moment of truth; I was going to find out if I was going to take medication or if I had to undergo surgery. I was apprehensive but excited to finally have answers and resolution.

Unfortunately, the outcome of my examination and tests was not nearly as clear cut as I had hoped. I did find out that I do not qualify for the medication to treat the pituitary tumors. It was also determined that I am not a candidate for surgery at this time. Apparently my tumors fluctuate in size and the doctors would like to figure out what is causing the drastic size changes before devising a treatment plan. After a long day, I left with few answers, more tests and no treatment at this time.

I drove another four hours home, in the rain, frustrated with the situation. I just want these tumors to be gone! I have not felt like myself since August, and I am tired of simply masking the symptoms.

One positive aspect to the long drive is that I was afforded time alone to just think. I rarely go anywhere without Robby, so not having to listen to The Wiggles in the car is a luxury. I was upset when I left my appointment, but I was starting to see the situation from a different perspective by the time I pulled into my mom's driveway.

I did not receive a clear cut treatment plan, but I did learn valuable information about my health. Before this appointment I did not realize that my tumor size varied drastically among the scans. I now realize it is important to determine the causes of this variation. After all, this information could unlock my treatment plan. So, after waiting for six months for the appointment and driving all day in the rain, I learned that I will have to live a few more months with these pituitary tumors until all of the information can be collected. I am thankful that I have medication to treat the symptoms, otherwise the wait would be miserable. I wish I had more information to report, but for now I suppose I have to be happy with learning the questions that need to be answered. These are baby steps but at least it is going in the right direction.

Wednesday, June 09, 2010

Another Mistake

Today I head to Pittsburgh to meet with the specialists concerning the pituitary tumors. I'm scared about what I might learn, so I have been trying to keep busy in order to avoid dwelling on the unknown. The mother of an active preschooler rarely needs to invent tasks to occupy time. Unanticipated projects frequently pop up at the most inopportune times. Yesterday I was presented with one of those "surprise" time-consuming chores.

Because my running leg still requires constant adjustment, Elliot (my prosthetist) and I have opted to refrain from putting the seal coat over the socket. The mounting bracket is not sealed to the carbon fiber so it is relatively easy to tinker with the alignment. Unfortunately, the absence of the seal leaves my prosthetic vulnerable to breaking. It would be dangerous if my prosthetic fell apart in mid stride, so a white nylon casting material was wrapped around the socket to keep everything in place.

It didn't bother me that I had white plastic wrapped around a black carbon fiber socket until I was getting ready for the race. For some reason, I just felt that it would look tacky bedazzled with my pink rhinestones if the socket were not uniform in color. I pulled out my paint brush and went to work.

I painted the cast material black, but the finish differed from the socket. I tried to feather the paint out over the carbon fiber in an effort to blend the colors. Twenty five minutes later my entire socket was painted with black tempera paint and was drying in front of the dehumidifier.

After the paint dried I was able to easily apply my rhinestones. I discovered that Robby loves to decorate! We ended up using three sheets of pink rhinestone stickers, but we were both pleased with the results. My leg was certainly sparkly and festive for my big running debut. I might have been slow, but I was the only runner who accessorized!

Because of the bursa/bone spur, I haven't been able to run since the race. I limped into the house after the race and quickly switched out legs. My running leg has been sitting in the middle of the living room, painted, bedazzled and undisturbed since Saturday.

I was packing for Pittsburgh when I heard words that I never imagined I would hear. "Ut oh Momom. I pee peed on your leg." I looked up from my bag and saw that Robby had, indeed, urinated all over my running leg.

I could tell that the urination was not deliberate. I suspect that he was so involved with his trucks that he simply forgot to go to the potty. Cleaning up accidents, I have learned, is another unspoken responsibility of motherhood. Mumbling under my breathe, I went to get a towel.

"Hurry Momom! Hurreeeeee!" I came running back into the bedroom to find Robby frantically pointing at my urine soaked running leg. I tried to console him, thinking he was upset because he had an accident.

After shrugging off my assurances that I wasn't mad, Robby directed my attention to the leg. Well, not exactly to my leg. He was pointing to the black paint that was now dripping off the socket onto our light beige carpet. I realized at that moment that tempera paint easily mixes with liquids.

I quickly picked up the leg, trying keep the black painted urine from dripping off as I carried it to the bathroom. Robby and I worked to clean the paint off the carpet with limited success. I've discovered that black is a difficult pigment to remove.

Robby promised to not "pee pee on Momom's leg" again. I promised to never again use water, or urine, soluble paint on my socket. I doubt that the stain will ever be completely removed. Hopefully it will remind me of the race and my accomplishment, and will not serve as a constant reminder of my stupidity for using black tempera paint on my leg.

Tuesday, June 08, 2010

Too Busy to Worry

During the past few weeks, our house has been buzzing with activity. My California Adventure kept Robby and I busy for nearly a week. We had just begun to adjust to being home when we got revved up for my 5K this past weekend. I would have loved to bask in the accomplishment, but I didn't have time.

Every year Scott hosts a luncheon to thank the businesses that work with his students. These business owners eagerly accept special education teenagers, many of whom possess little to no work skills, and offer them an opportunity to experience the workplace and to build their resumes. The luncheon is Scott's way of thanking these individuals while honoring them for their participation in the internship program.

In addition to thanking the businesses, the luncheon also serves as a celebration for the students. Many of the students graduate upon completing the Internship program, and this lunch is often the last business they have at the school. Because many of Scott's students come from dysfunctional families or are in foster care, their high school graduation often passes unnoticed. For too many kids, this lunch often serves as the only commemoration for their high school graduation. We strive to make it special.

Because we receive no reimbursement for the event, Scott and I often struggle to provide a memorable event on a shoe string budget. Each year we resolve to delegate the responsibilities. Despite our planning and requests, the cooking and decorating always falls upon my shoulders. I spent all day Sunday cooking.

We had 48 confirmed guests, but we have learned through experience to anticipate a slight increase in attendance from those who forgot to RSVP. This year's menu included chicken salad, sloppy joes, smoked chicken legs, baked beans, pasta salad, homemade rolls, and cookies. We made a lot of food, but teenagers eat a lot! Robby was a willing helper when it came to making cookies. Together, we made over 12 dozen. By the time Sunday evening rolled around, I was exhausted.

Monday morning Robby and I packed up with car with the food, tableware and decorations, and headed in to "Daddy's big school." The luncheon was a success, with nearly 55 people in attendance. It is always a lot of work, but it is worth it when I see the excitement on the faces of his students. I am, however, happy that it is over.

My leg is sore and my muscles are tired. My bursa/bone spur is angry and is making me cringe with every step. I need to make an appointment with my surgeon to have my limb examined. Unfortunately, the appointment will need to wait.

Wednesday I am driving to Pittsburgh to visit the specialists concerning my pituitary tumors. I haven't been nervous about the appointment until now. On the other hand, I haven't had time to think about it. I've been moving from one project to another with blinders on. I've had little time to look ahead. I've known about the appointment for months, but it somehow feels like it sneaked up on me.

When I think about the appointment and the possible surgery, I become scared. I am used to having surgery on my lower extremities, but the prospect of a laser being aimed near my brain terrifies me! I suspect that my avoidance of thinking about the impending appointment is a result of my fear as much as my busy schedule. But the appointment is now tomorrow, so I cannot put off dealing with it any longer.

I'm going to try to rest my leg, but I need to pack and get ready to go to Pittsburgh. Hopefully I'll have more answers concerning my health tomorrow. I know that I'll feel better once I have a definitive treatment plan. Until then, I think I'll stick with denial. It keeps me from worrying and crying!

Monday, June 07, 2010

Still on Cloud 9

At the risk of sounding pompous or conceited, I have to admit that I am proud of myself. I suppose I am still in disbelief that I actually jogged the entire 5K. The entire day feels surreal.

I am so thankful that my sister Sheri came down to run the race with me. In addition to being an incredibly strong woman for her own family, she has helped me throughout my journey. She is a breast cancer survivor. Saturday was the one-year anniversary of the date that she started chemotherapy last year, so it was appropriate that she was by my side, celebrating life and perseverance.

Although she has not been running since the birth of her children, Sheri is an experienced runner. She is familiar with how races are run and knew where we should be positioned. She was invaluable maneuvering through the crowds and protecting my leg from being bumped or my being tripped. She was my cheerleader, my guide and my bodyguard during our run.

I spent Friday embroidering shirts for Scott, Robby, my Mom and my niece to wear. I also decorated my socket with pink rhinestones for the event. We were quite the coordinated and spirited family! My Mom had to leave her house at 3:30 AM in order to make it to the event on time. I cannot thank her enough for her unwavering show of support.

My nerves were jumping when my sister and I took our places at the starting line. I was in awe of the sheer number of participants and spectators. I began to doubt myself. Had I trained hard enough? Was I ready for this challenge? I was scared.

For the first few blocks, my sister and I were held at a slow walk due to the congestion. As soon as we had an opening, we began to jog. I had a moment of disbelief. I was actually jogging, in public, on a prosthetic leg and I wasn't failing!

Unfortunately, my socket issues were not completely rectified in time for the event. I continued to be plagued by pain and rubbing on the bursa/bone spur. I was forced to stop to adjust my leg several times.

The first time I stopped to adjust my leg, I was embarrassed. I assumed that everybody would stare as I slipped off my leg to make an adjustment. It didn't take long to realize that all of the participants were busy with their own race and that they were oblivious to me.

With the exception of my socket adjustments, we never stopped jogging. We weaved through the traffic of people as we kept a steady pace. I realized that the most dangerous location in a race for the amputee runner is around the water station. I almost fell twice because my prosthetic slipped on the discarded waxy paper cups.

Just when I thought that my leg pain was going to be unbearable, I encountered the boost that I needed. I saw my Mom, Scott, Robby and Tiffy excitingly cheering us on. It is impossible not to feel an extra surge of adrenaline when you hear "Run Mommy Run" being happily yelled!

Apparently Tiffy and Robby took their responsibilities as cheerleader seriously. I later found out that the two camped out by the side of the road, high-fiving the runners as they approached the last corner before the finish line. They jumped up and down and gleefully celebrated each victory!

Robby ran into the road and ran a portion of the race holding my hand. Seeing the excitement in his eyes was the lift that I needed to keep going. He looked at me and said, "Momom you're running." Pushing away a tear, I smiled and kept moving. Tiffy joined our group, skipping along as we jogged towards the finish.

I was exhausted, elated and feeling a numbing sense of pride when we crossed the finish line. I had made it. When I lost my leg, I never fathomed that I would be able to run an entire 5K. I realized that I am, indeed, a stronger person now than I was when I had both legs.

We finished the race in 56 minutes. It is certainly not a record breaking speed, and most casual runners can probably put forth a faster time. Those runners did not have to contend with the socket issues and stump pain that I endured for each of those kilometers. Under the circumstances, I feel that my time is "brag worthy."

Technically, slow and steady did not win the race. The strategy did get me to the finish line ahead of about 25,000 people. Despite all of the pain and the set backs I encountered during my training, I was able to stick with it and I never gave up.

As I was approaching the finish line, I thought of so many friends that I have made since starting my blog. The support I received through comments, emails and Facebook were invaluable. I cannot thank you enough for believing in me despite my own doubts.

The record books will not list my name as the winner, but I am choosing to ignore the scores of people who crossed the line ahead of me. We did finish within the top 25%, which I think is impressive for my first run. In my heart, and in the eyes of my little boy, I am the winner. I received a participation medal, which for me is as good as the Olympic gold. I did it! I ran, and I finished.