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 25, 2013

I Hope I Remember...

I was reminded about how quickly Robby has grown while looking at picture of past Halloweens. Memories came flooding back, especially from his first Halloween. Then I looked at him sitting on the couch, and I wanted to remember every detail.  I know that time has a way of tempering memories, so I am writing this blog in hopes of providing myself with a reminder for when he is grown, we are visiting him in his home, and our roles are reversed.

I hope I remember that I should sit on his couch, preferably within 15 minutes of finishing dinner, and squawk that I'm hun-gry. I will turn down the first two snack options, only to begrudgingly accept vanilla pudding. I won't eat the pudding, but I will open it so that I can leave the lid on top of the television and the little tub of sticky goo on his favorite rocker. 

I hope I remember that when I am eating a cookie that I should always leave the last bite uneaten. This is apparently the worst part of the cookie and should be put down on top of the closest fixture.

I hope I remember that cups and glasses are for single use only. If I want a drink, I will leave my glass on the coffee table and get a new one out of the cabinet. If this becomes too tiring, I shall simply scream for Robby to fetch me a drink, expecting a quick response regardless of his location.

I hope I remember that throw blankets are an acceptable replacement for a napkin. If a blanket isn't available, I will utilize his cat.

I hope I remember to change my clothes in the living room instead of my bedroom. I will leave trails of socks and dirty underwear strewn throughout the prominent living areas. I'll pick them up and put them in the hamper, but only after he asks no fewer than three times. 

I hope I remember to leave my shoes in inconvenient and nonsensical locations. This will include, but will not be limited to the microwave oven, inside the refrigerator and the top of the cat tower. I will immediately forget where I placed them, requiring Robby to run around frantically in the morning so that we can keep our schedule. I may become distracted and begin playing with the closest toy.

I hope I remember that sticky, dirty or hands laden with wet paint do not need to be washed. Wiping them clean on my pants, or on the bottom of Robby's shirt, will suffice.

I don't like video games but I hope I remember to find one with the most annoying sound effects. I will wait until he settles into his chair to watch the news before turning the TV to game mode. If I become frustrated in the game, I will scream and cry, throwing blame on Robby (despite knowing that he has nothing to do with my gaming skills).

I hope I remember to pee on his bathroom floor. Not enough to create a puddle or stain, but enough so that the urine aroma hits him every time he enters the space. I will remind Scott that lifting the toilet seat is optional, and to ignore the dribbles left behind. Speaking of the bathroom, I am looking forward to screaming, "Robby come here, it's a sticky poop and I need you to wipe my bum." 

I hope I remember to fuss and complain when washing my hair. I will scream that soap is in my eyes despite the fact that I will be wearing shower goggles. I will also try to leave more water on the walls and floor than in the tub. 

When it is time for bed, I hope I remember to solicit Robby's help when trying to find my favorite stuffed toy. We will walk through the entire house, look under cushions and in closets. I will smile when Robby finally finds it after 5 minutes of searching, tucked into the pile of covers or under the pillow on my bed. 

I hope I remember to sleep in during the week but to wake up before dawn on the weekends. I will tiptoe into his bedroom and begin to immediately request food and a cartoon. His pleas for additional sleep will only intensify my efforts.

In spite of all of these little quirks, I hope I always remember how precious and sweet my little boy can be. I hope that I remember the way he always wipes off a kiss so that he can put it in his heart. I hope I always remember the sticky little fingers entwining mine when we walk out of his school. I hope I always remember that someday I will miss these days.




Thursday, October 24, 2013

Boxing Invitation

When I picked up Robby from school yesterday, I immediately knew that something was wrong.  Typically slow to gather his belongings, he practically took my hand and ran out the door when I arrived. Once he buckled himself into the car seat the tears began to flow.
"Momom, I had the most horriblest day ever. Joshua beat the snot out of me. I hit him back but only because if I didn't he would have kept whamming me."

Shocked by his statement, I pulled the car over and turned off the ignition.  I pushed the toys, papers and assorted junk which accumulates in the back seat to the floor and sat next to him. Slowly, he began to explain what happened.

Apparently Robby was invited to "play box" with a boy in his class. When Robby told him that he wanted to look for gold instead (he has become quite the little prospector and is convinced he is going to strike it rich) the classmate pushed him on the shoulder. The situation escalated and resulted in Robby being pushed, kicked, elbowed and slapped. 
Robby fully admits that he fought back, and we praised him for defending himself. I don't want to raise a child who becomes a punching bag, but I also don't want to raise a little bully. While I don't condone violence, I realize that he will encounter situations where self-defense might be necessary. I just didn't think that it would happen at his young age!
By the time we finally arrived home, Robby was feeling better. He has a few bruises but those will heal--probably faster than the memories of the incident. After a lengthy family discussion, we formulated a plan.

Robby knows that should he be "invited"  to box again, he is to immediately walk away and play within close proximity to his teacher. If the harassment continues or if the child throws balls at him (like he did yesterday when Robby tried to flee),  he is to inform his teacher. This morning I will speak privately with the teacher and her assistant to relay the incident and to recap our discussion with Robby. 
I'm hoping that this is an isolated incident that simply escalated. The thought of Robby being physically hurt or afraid is almost unbearable. Although I plan on remaining polite and professional, I want to convey our expectations to the school staff. I realize that children fight, but Robby needs to feel safe at school.

Wednesday, October 23, 2013

Pre-Op Questions

Robby's surgery is Friday and, although I realize it is a minor procedure, my nerves are beginning to take fray. I know that the surgery is necessary, but it feels unnatural putting his well-being and safety in the hands of others. I am sure that this stems from my control-seeking tendencies. 

Between fielding phone calls from the hospital, navigating through my insurance and securing the correct pre-op paperwork and testing, I am fairly certain that my time investment exceeds the time Robby will be in the operating room. The pre-op paperwork, obviously a one-form-fits-everybody document, took me nearly 45 minutes to complete. Questions ranged from generic to the absurdly detailed, requiring both simple check marks and verbose written explanations.  "Are you pregnant?" was followed by "If no, please explain your certainty." Not knowing what to say, I simply wrote that "I know with certainty that I am not pregnant because I am a 7 year old boy."

The tricky wording of each question reminded me of the LSATs, forcing me to carefully read each word to choose the correct response. Double negatives and trick questions kept me from simply checking "no" by rote. Had I not read the questions carefully, I would have agreed that Robby didn't have an active heart rate, that he was on a liquid diet and he consumed alcoholic beverages. 

Each of the 175 questions, with spaces for explanation, were required to be completed before the form could be accepted for submission. I was asked marital status (single) and occupation (elementary student) three separate times! By the time I was finally finished with the forms I was ready to bang my head against the wall in frustration.

Who would have thought that such a benign procedure would require so much preparation! I suppose that being thorough is an asset, so I probably shouldn't complain. If I receive a follow-up survey, which I undoubtedly will be in my inbox by the time we are home on Friday afternoon, I plan on suggesting separate forms for children. Many of the questions simply didn't apply and forcing answers bordered on the absurd. 

Tuesday, October 22, 2013

What is Normal?

It has been more than 36 hours since the video shoot and my mind is still reeling. Everything happened so quickly that it felt like a blur. I keep reliving the great humiliation, my dance routine, and always instinctively want to bang my head on the table and laugh.

In all fairness, I had no idea that I was going to be asked to dance. Had I been forewarned, I would have tried to learn some basic routine and a few moves. Left unprepared, I was forced to rely upon my past experiences. Unfortunate for everybody, my previous dance experience is limited to The Wiggles, The Chicken Dance, and The Hokey Pokey. Feeling pressured to perform, I resorted to  mimicking the moves from all of them during my dance routine.

After watching my disjointed attempts at dancing with a look of disbelief (keep in mind it is difficult to shock transgender and other unique performers), the crew tried to guide my movements. Standing behind the camera, they began dancing to the song, hoping that I would loosen up and follow suit. I tried my best to follow along, but my moves were always two beats behind the music. I think that they underestimated my dancing disability!

Although I want to face palm myself every time I relive the dancing, it was an experience that I will always cherish. It isn't often that somebody is invited into a completely different culture. From the crew to the performers on hand, it was enlightening to experience something completely foreign from my regular routine.

The shock I felt when meeting my fellow cast mates (the transgender performer named Clover, the nearly 8 foot lady with platform heels and the man in the bustier sporting velvet gloves and a riding crop) was reciprocated when they saw me remove my prosthesis. I found it odd that individuals who live such flamboyant lives would be surprised by me simply removing my leg. After all, I think nothing of people whipping off their prosthetic arms and legs.

 "Normal" is not a fixed state but rather fluid and based upon experiences. The performers I met are used to gaudy costumes, lace and leather, and over the top accessories. Their norm was more theatrical based, creating characters for gender exploration and shock value.

My norm involves keeping legs lined up against my bedroom wall so that I can choose appropriately in the morning. I'm sure that my wall of legs is a surprise to people who do not frequent my home, but we don't even give it a thought anymore. At the end of the day, it is all a matter of perspective and experience.

I've had been trying to figure out a similarity between me and the performers, but perhaps I have been over thinking it. I think that the answer was right in front of me the whole time. In the end, we all just want to be accepted and be able to live happy and fulfilling lives. It doesn't matter what somebody wears, whether it be clothing intended for another gender or a prosthesis for a missing limb. We all deserve to be respected and permitted to live to the best of our abilities.



Monday, October 21, 2013

Surreal Video Shoot



I have had some wonderful opportunities since I began this blog. I have been featured on television shows, interviewed by reporters from CNN, MSNBC and FOX news, and had my image used in numerous ads as well as on the cover of Ossurs prosthetic catalog. I have tried to embrace each opportunity because I know that these are once in a lifetime experiences.  On Sunday I was able to add one more event to my list: participate in a music video shoot.

Sunday was a blur starting with my waking up early to catch a train to New York City. Unfortunately I was on the train for 10 minutes when the conductor announced a one hour delay. I tried to plan for everything, but I couldn’t have predicted a tree falling on the tracks.

Other than the delay, the trip to the city was uneventful. I tried to use the time to relax and calm my nerves. Neither worked, and I was a jumble of nervous energy when we pulled into Penn Station.

By the time I hailed a cab and arrived at the studio I had rediscovered my “game” face. I am never confident going into new situations, but I have become adept at faking it. I did my best to hold my head high and exude self-confidence while inside I felt like hiding in the corner of Junior’s Cheesecake shop, gorging myself until it was time to go home.

Walking into the studio felt like I was walking into a different universe. A lovely man who introduced himself as Clover greeted me. Clover was wearing fishnet stockings, a black leotard, and a feather boa strewn with rhinestones. He completed the look with a platinum blonde wig and gorgeous fake eye lashes.

Beside Clover was a beautiful African American lady who was wearing a leopard bra and panties. I am sure my jaw dropped in the most obvious way when she stood up. Normally 6’7”, the 12 inch platform shoes had her standing nearly 8 feet tall.  I was impressed with the grace that she could maneuver around the studio because I would end up face down in the platter of olives if I tried.

Next on the couch was a young man, probably close to 21, wearing a black bustier, thigh high fishnet stockings held on with a garter belt. He was sporting a police cap and velvet gloves while clutching a riding crop.  I couldn’t help but think the choice of maintaining a beard was odd.
And then there was me, a pregnant middle aged amputee from Suburbia. The song “One of these things is not like the other” kept looping through my head as I tried to take stock of the situation. I was most certainly out of my comfort zone. I felt like a country bumpkin who had just swept off the farm and into Oz.

After my initial shock, I was surprised by how quickly I began to adjust. The make-up artist did my make up, and my wardrobe was selected. Thankfully they thought better of putting me in risqué lingerie. After all, nobody wants to see that! I was put in a demure lace-like long top which I would have considered to be racy mere hours earlier. I guess everything is relative because compared to my counterparts, I looked like a Puritan.

The video was explained to me and, although I can’t go into too many details, the theme is focusing on unique types of beauty. I understand that other individuals with disabilities were scheduled for later in the day. The song is lovely and the theme for the video is personal empowerment despite being viewed as a societal outcast.

My portion of the filming occurred first because I had a tighter schedule than my cast mates. Initially all  I had to do was stand and look at the camera. I felt confident that I could handle that directive. Everything was going smoothly until the music was cranked up. I was then asked to dance, and all hopes of me leaving the video shoot with my dignity evaporated.

Here is a little known fact about me:  I have absolutely no rhythm. None. The only dance I can do reasonably well is the Chicken Dance at weddings. Putting on music, shining bright lights in my face and surrounding me with cameras resulted in my looking like a fish flapping on the dock. Recognizing my poor dancing skills only served to intensify my wretched movements.  They kept telling me to loosen up and move. They apparently didn’t consider my jerky, unsightly and uncoordinated movements to be dancing. They tried to dance in the background. I tried to mimic their movements, but I think my efforts only worsened my performance.

After moving (I won’t insult anybody by calling what I did dancing,) the director asked me to lip synch part of the song.  Here is another little known fact about me: I can’t lip synch. Every time I try I end up singing. I only know how to sing one way:  loudly and with a lot of enthusiasm. Considering that I was asked to keep quiet in my mandatory 5th grade chorus, it is safe to say that my inability to dance is only superseded by my enthusiastic, yet painfully off-tune singing.  

A whirlwind of an afternoon came to an end, and before I knew it I was riding the train home. I have decided that I love traveling by train. Between the roomy seats, the electric outlets provided and the free wi-fi, I was able to get more work done than I would have at home. Although it was a public space, I was not constantly hounded to find items, cook a snack or help with a game! I was able to log onto my Hotspot VPN, play on Facebook and get considerable writing done. Normally I would not have felt comfortable logging into my accounts on a public network, but with the VPN I knew I was secure!

Yesterday was certainly a day to live outside my comfort zone. I wore clothes I would never wear, met unique individuals and humiliated myself numerous ways on camera. Needless to say, I am expecting much of my role to be taking up residence on the cutting room floor.  Despite the self-inflicted embarrassment, it was an experience I will always treasure. I may not make the video, but I certainly did my best, even when I knew it was going to be woefully inadequate.





The lady taking the pictures was not on a chair... she was just this tall when wearing her heels!