The Big Wig Fight

A dear friend has recently finished chemotherapy treatment. She is now healthy, but the ravages of the drugs has caused her hair to fall out. This is not an uncommon side effect of chemotherapy drugs. I suppose everybody knows somebody who has gone through treatment, so it should not be such a shock when seeing a survivor in public, donning a smooth head. More than the stares, I think it is the looks of pity that distress her the most.

Comfortable within her skin and not ashamed of her diagnosis or treatment, my friend often chooses not to wear a wig. She has a wig, of course, but she contends that it is uncomfortable and itchy, especially in the summer heat. Many times she opts for a hat when going out. In order to make her children feel involved and helpful, she allows them to choose the hat for the day. They each take this responsibility very seriously.

The other evening, my friend was taking her daughter to her kindergarten orientation. This is an event which has been on the calendar for several months, and has been as anticipated as Christmas. The entire family was excited. Because of the special event, my friend allowed her daughter to choose the hat. To nobody's surprise, a purple and pink plaid hat was chosen by the little girl.

Shortly before the orientation started, my friend phoned me. It was difficult to understand her because she was sobbing. I was able to gather that she and her husband had an argument. After calming her down, I was able to ascertain the details.

Despite the discomfort of the wig, her husband felt that it needed to be worn for this special event. He remarked that he didn't want his daughter to have the only "bald Mom" and was worried that it would be fodder for ridicule. He felt that sometimes social decorum dictates the need for a wig, and that there was no need to draw unnecessary attention to the family or to her illness.

To say that she was devastated would be an understatement. In her fragile state, she interpreted his remarks to imply shame he felt about her condition. Simply put, she felt that he was calling her ugly because she was bald.

Although I completely disagree with her husband's approach and lack of tact, I was able to see the logic behind his statement. I listened to her cry, and reassured her of her beauty, both internal and external. When her humor returned and her tears dried, I attempted to explain her husband's position through my own experiences.

I do not wear a cosmetic cover on my leg. I often wear shorts and skirts, not out of ploy to draw attention to myself, but out of my own comfort and fashion desires. I don't feel the need to hide my prosthetic. I am not ashamed, and I am comfortable being an amputee. However, I am aware that my prosthetic does draw attention, stares and often judgments and comments from others.

Although I don't feel the need to disguise or to hide my prosthetic, there are circumstances when I do not want to draw any attention to myself. This is not out of shame, but out of respect for the situation or for others. During these times, I will wear pants or a cover.

Robby has been enrolled in several preschool classes. I have worn pants to all of these classes. Not because I wanted to hide, but because I didn't want my prosthetic to be the first impression at a class that was meant to focus on my child. I wanted the children and their parents to remember Robby, not the amputee Mommy who was with him. My wearing pants has been a deliberate choice so that my son does not "stick out" among his peers.

I have no doubt that my friend's husband was trying to relay this view, but being rather tactless, he was not able to convey this point without hurting her fragile feelings. He definitely needs to work on his approach, and hopefully she will become less sensitive.

I received a phone call later that night. My friend wore her wig, and her little girl has already found a best friend. In time, after people get to know the child and my friend, her physical struggles will become apparent to others. In the meantime, the orientation was about the child, and I am glad that she was able to fit in and is excited about school.

My To Do List...

I have a long list of home projects I was hoping to accomplish this summer. So far, the only thing I've been able to cross of my list has been the first item-- to make a list. I am not sure where time has gone, but I really need to get busy if I'm going to get any of these projects completed before Scott returns to work.

Cleaning our storage garage has been an ongoing, looming project. Several summers ago we purchased shelving and tried to get organized. I can't say that the space was ever clean, but it was certainly maneuverable, which was a huge improvement. Two weeks after we cleaned out the room, our neighbor gave us a fabulous race car bed for Robby. Robby was still in a crib, so the bed was placed into the storage garage.

The bed claimed any clean space we were able to obtain through our organization efforts. For the last two years, we have been unable to do little but open the door and toss in items, hoping to close the door before something fell. Now that he is a "big boy" we have disassembled the crib and put up the race car bed. Vroom Vroom... he is thrilled!

Since my excuse for the cluttered garage is gone, I resolved to get busy and get organized. This type of chore is not Scott's strongest suit, so he is assigned the job of entertaining our little three-year old "helper."

My first category has to be baby equipment. I am astounded at how such a small little person can require such big items. And to make matters worse, I have at lease two of everything.

I am sure my friends were expecting me to have twins when they saw my baby registry. There was a method to my madness, and I would recommend this to any expectant amputee. Because of my amputation, I knew that there were going to be days when it was difficult for me to walk. I also knew that carrying around a baby was going to be more laborious and would contribute to increased pain. I planned for periods of immobility and for the possibility of revision surgeries.

I wanted to have equipment for the baby both upstairs and downstairs. With seats, swings and playpens throughout the house, I wasn't going to have to lug large and awkward apparatus into another room so that I could watch TV, cook dinner or clean. My plan worked perfectly, and I never lacked a safe resting location for Robby.

I was also correct when I feared immobility and revision surgeries. I developed bone spurs during the pregnancy because of the excess calcium. Seven weeks after Robby was born, I was in the hospital having surgery on my stump. I was without my prosthetic for six weeks, and walking after the surgery remained difficult for months.

During this recovery I was thankful for the safe places to lay Robby. I kept him in the bassinet next to our bed so that I could care for him without walking. When I did need to move throughout the house, I used my Roller-Aid and strapped Robby to my chest in his carrier. I had a bouncer in the bathroom so that I could put him down when I needed to use the facilities. A swing was in the kitchen so that he could be unstrapped and put down when I was preparing bottles or lunch for myself.

Our house was cluttered with baby equipment for many months. I am sure that our guests were taken aback when they saw the odd placement of some of Robby's seats. However, it was practical and functional, and I was able to care for Robby.

One unforeseen consequence of my "baby equipment plan" has been the space that all of this equipment takes up in storage. Two sets of shelves will surely be filled with disassembled bouncers, swings, beds, playpens, and just about anything else that you've ever seen at Babies R Us! I probably have enough equipment to start my own daycare.

I suppose I could have a yard sale to unload some of the toys and to make some extra money. I guess I'm just not ready to get rid of everything yet. Who knows, maybe I'll need to pull it out again someday for another baby. For now, I'll just keep it in the garage, neatly stacked and organized on the shelves. That is, as soon as I get around to it.

HOT HOT HOT

According to the news, and I tend to agree, we are in the middle of a heat wave. It has been beyond hot; it has been down right oppressive. I have been an amputee now for six summers. Every heat wave I find myself muttering the same complaint. Being an amputee during the hottest days of summer is miserable.

Despite the air conditioner, our house smells from the heat and humidity. We have high vaulted ceilings in the living room. Apparently, we forgot to turn on the ceiling fan to circulate the air. Condensation has formed from the rafters and has stained the paint. I suppose now we're going to have to convince my cousin Ellen and her husband to drive down to help us paint, again.

We can't close our doors because the wood has swelled from the humidity. Unfortunately, wood isn't the only thing swelling from the heat. My stump has increased in volume, making my socket tight and uncomfortable. Right now, I feel as if my residual limb is a sausage stuffed into a very small casing.

I've been experiencing the uncomfortable and slightly painful tingling and numbing sensations that accompany a tight socket. Relieving the pressure of the valve helps temporarily, but the issue resumes as soon as the suction is resumed. It has been a constant battle between walking with a tight prosthetic for a long as possible verses removing the leg to allow for circulation to resume. Needless to say, I haven't accomplished much today!

I'm going to use the shrinker sock tonight. The compression, accompanied by a cool bath, should help with the swelling by morning. Unfortunately, if the heat and humidity continues, the remedy will be only temporary. I've accepted this as just "one of those amputee things."

As if my swelling stump and tight socket, compounded with the heat weren't enough to make me uncomfortable, I've developed a heat rash from my liner. Tiny, itchy red bumps are covering the inside of my residual limb, starting at my knee and continuing for about 3 inches. None of these issues are enough to make me stop wearing my prosthetic. Combined, they are enough to make me miserable.

Until this sweltering heat breaks, I have little option but to stay indoors as much as possible. We have both the air conditioner and the dehumidifier running to make the house as comfortable as possible. Robby is antsy because he wants to run and play outside. Once outside, the heat quickly makes even my rugged toddler retreat.

Robby has a lot of energy, and he is bored. Combine these factors with my difficulty walking right now, and I am predicting impending destruction. Hopefully the heat will retreat below 90, and the humidity will drop. My stump will then deflate, and the heat bumps will dissipate. Until then, I am thankful for Playhouse Disney and Dora the Explorer!

An Amazing Man

Today is a bittersweet day. It is the birthday of my grandfather, my Pop. My Pop passed away nearly 16 years ago. It seems like only yesterday when he was buying me cookies n' cream ice cream and quietly encouraging me to reach my dreams. It has been over a decade, but I still miss him deeply.

The adjective "special" does not aptly describe Pop. He was quiet, but his devotion and love were steadfast. He was the true definition of unconditional love. I never doubted his love, and if he was ever disappointed in me, I never knew it.

Pop proudly served in the United States Air Force, and was active through three wars. He was deployed during World War 2, and suffered lifelong hearing loss because of the conflict. He loved his work, and he loved his country.

In many ways, I am glad that my Pop never lived to see me as an amputee. The surgeries, the pain and the heartache I endured through my journey would have broken his heart. I know that his support would never have wavered, although seeing me struggle would have caused him great pain.

Although he would have been distraught and saddened by my being an amputee, part of him would have been fascinated. Pop was the consummate "tinkerer." He loved to fix things, or to adjust them in some way. I have little doubt that he would have nabbed my prosthetic at the first opportunity because he wanted to "improve" it somehow.

Pop spent countless hours in his workshop, partly playing and partly escaping my grandmother. He was a devoted spouse, and the depths of his care-taking were only known after he passed away. My grandmother required an inordinate amount of care in her later years, and we never knew him to complain. He loved her. When her nagging became too much and he couldn't escape into the sanctuary of his workshop, he simply turned down his hearing aid.

He smoked, despite a heart attack and subsequent open heart surgery. He claimed that he had quit, although he often reeked of cigarette smoke mixed with Certs breath mints. We found his cigarettes after his death, hidden behind a ceiling tile. The smell of mint breath mints makes me miss him.

He loved to eat, and reveled at the "all you can eat" buffet. Because of his heart condition, my grandmother stopped using salt. Unfortunately for the family, she refused to introduce spices into her cuisine. My Pop made the most of every opportunity to eat. We often drove to the all you can eat restaurant separately because we knew that he would want to stay and continue his feast.

Today is my Pop's birthday, and although he is missed, I know that he is still present in my life. He has become my guardian angel. We often joke that he must not have a lot of seniority in heaven because he couldn't heal my leg and thwart my amputation. He is guiding my life through the "little gestures" and random kindnesses that beset me.

When I had my amputation, I developed a cerebral fluid leak through the epidural in my spine. The headache and nausea were unbearable. Although I was only 20 hours post-amputation, the pain caused from the cerebral fluid leak was more severe than the pain from the surgery.

I was prepped for a blood patch to stop the leak. I was desperate for relief as I was taken to the operating room. After poking and prodding at my veins for what seemed like an hour but was, in reality, probably only 10 minutes, the doctor became frustrated. He told me that he didn't think he was going to be able to draw enough "good blood" to alleviate the problem.

Despite the pain medications, I was suffering. I vividly remember closing my eyes, and quietly asking my Pop for help. After my silent plea, the doctor said, "Whatever you did worked, the blood is flowing now." My grandfather wasn't able to cure my foot, because this was too big of a job for such a new angel. Helping to make my blood flow was within his "new angel" abilities. Since this experience, I have always felt his presence.

My Pop had a way of making all of his grandchildren feel as if they were cherished. His face would brighten whenever we entered the room. I miss his warm, strong hugs and his soft, gentle voice. He would have adored being a great-grandfather.

I named my son after my grandfather and my cousin, who share the same name. When Robby was born, Scott and I debated on his name. Scott wanted to name him Brutus, in honor of The Ohio State Buckeyes. When I was holding my little newborn in the hospital, I instantly missed my Pop. I knew that I would name my son after this amazing man. Robert was the perfect name for my little miracle.

I have already told Robby about my grandfather. Although he will never have the opportunity to know Pop, it is important that Robby know about and appreciate him. He was an amazing man, and he is thought about often. I am blessed to have known him, and honored to be his granddaughter. I hope that I am making him proud.

Lessons Learned

I have learned some valuable information through my blog. I've discovered that I am not alone in my feelings of isolation and feeling lost in life. I have heard from so many wonderful women who have confessed to having similar feelings.

Yesterday I took Robby to the animal park again. He has discovered the joy of feeding the fish. As I was watching the fish, all hoarded together in a stagnant pond while gasping for air and food, I realized that I could relate to their plight.

I, too, feel as if I am struggling. Sometimes it feels as if the world is happening around me, and I am standing still. not sure of where to go and or how to proceed.

I am not alone. I suspect that everybody, particularly mothers, encounter these identity dilemmas. Many of the women who contacted me were amputees who were trying to find a place in a "four-limbed" world. Being an amputee certainly adds a layer of complication, but the struggle is universal.

My life has drastically changed since I became a mother. Every decision, from what and when I am going to eat, to how I am going to spend the day, is influenced by my little boy. I appreciate the fact that Scott's life has also changed since Robby's birth.

In general, I think that men are more immune to this kind of identity crisis because they are able to retain more of themselves. My husband is able to engross himself in auto races, football or any other sport while I entertain Robby. He is able to carve out this time for himself without guilt, which is nearly impossible for me. At this moment, Scott is in the other room watching ESPN while I am trying to write despite Robby hopping on the bed pretending to be a frog.

I have lost the ability to sleep until I naturally wake in the morning. The mornings of enjoying a leisurely cup of coffee have been replaced by chugging a few sips of the burning hot caffeine before changing a diaper and finishing it cold after tending to the needs of the toddler. Some days, the only "Peggy time" I get is when I remember to lock the bathroom door!

It is reassuring to know that many mothers, both able-bodied and disabled, feel isolated and lost. Before writing my blog last week I felt as if I were the only person who loved her family yet still felt unfulfilled. I was ashamed. I thought that I was being selfish and that I was a bad mom because tending to Robby's needs did not completely satisfy all of my needs. I was judging myself, and I was wrong to do so.

So, the question still looms. What do I do now, and who am I? I am a thirty-five year old, stay at home Mommy. I am also an amputee. I have given up my career, temporarily, for the opportunity to raise my son. I am a mom, a laundry worker, a cook and a housekeeper. I am also a daughter, a sister, a wife and a friend.

I have not given up my talents, my compassion for others, or my intellect. I dream of being a writer, of being a voice for amputees and for mommys. Perhaps the transparency of my feelings and experiences can help other women dealing with limb loss or any life changing experience.

I am a firm believer in the "everything happens for a reason" mantra. Perhaps I have been waiting for the reason behind my amputation to show itself. Maybe, just maybe, I need to become more proactive towards defining the reasons behind my limb loss. Instead of passively waiting for an epiphany I should be working towards creating my own definitions. Dreams only become a reality when they are set into motion. I have started writing my book.