My Two Cents... Again

This is not my first post concerning the importance of developing an open and trusting relationship with your prosthetist. After the surgical wounds heal, an appropriate and comfortable prosthetic relationship becomes imperative for the amputee's recovery. Finding a prosthetist that can not only manufacture and service the devices but also can meet the various needs of the amputee is paramount. This is a powerful issue for many amputees, so I thought it was worth revisiting.

I must confess that I believe I hit the jackpot with my prosthetist Elliot. Before my amputation I thoroughly researched various prosthetists in my area. I asked amputees for recommendations and I was surprised at how many amputees are dissatisfied with the care that they are receiving. These people wouldn't recommend their prosthetist, yet they were uncomfortable or unwilling switching to a new practitioner.

Elliot and I have maintained an open dialog since my initial visit. I am able to tell him my goals and my concerns. He has never told me that something is impossible, or that I need to learn to live with discomfort or an inability to perform a task. We share the same ultimate goal: to minimize the impact of my amputation by providing me with the tools necessary to fulfill my dreams. In my opinion, a prosthetist should never limit the opportunities for the amputee but should strive to open up the possibilities.

If I had a leaky roof, I would not accept a roofer telling me to use buckets to catch the drips, or to walk around the hole. I would demand that the roof be fixed correctly, and if it wasn't I would look elsewhere. I would not accept a prosthetist telling me to "deal with" an uncomfortable socket, nor would I passively comply if I were told that I would not be able to do something (for example ride a bike) because I am an amputee.

I have been asked, "When is it the right time to find a new prosthetist?" My answer is simple. When you find yourself doubting the care that you are receiving is adequate or when the trust in the prosthetist is gone, find somebody new. If you are told that you will never be able to do something that you used to enjoy before your amputation, go elsewhere. It is the role of the prosthetist to provide the tools necessary for the amputee to return to a happy, active lifestyle. If your abilities are being impeded because of the prosthetics that are offered to you, find a new prosthetist.

It is always uncomfortable and slightly painful when the new amputee is fitted with a prosthetic. The limb is not used to new pressure points, and strain is put on muscles that are not accustomed to working. It is difficult for the new amputee to decipher if the discomfort he is feeling is normal or the result of an ill-fitting socket.

If the discomfort persists or if pressure sores or pinch cuts are developing, the socket is the culprit. In my experience the discomfort associated with a new socket only lasts a few days to a week. After that time, your muscles may be fatigued and tired, but you should not be experiencing pain. If you are still in pain longer than you think is normal or if the leg is so uncomfortable that you cannot stand to wear it, call to have the socket checked. If your practitioner is unwilling to make adjustments or implies that discomfort and pain are the norm for the amputee, I would suggest finding somebody new. A painful prosthetic is not due to mistakes by the wearer, and any implication of such should be a red flag.

The amputee is the one who is ultimately harmed by staying with a prosthetist with whom they are not satisfied. It is always uncomfortable making the switch, but when you consider that your mobility and happiness are at stake, the call may be easier to make.

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6 Years Ago

Six years ago this morning I was waking up to the waves lapping the fine white sand in front of my beach front cottage. The sky was Sapphire blue and the tropical waters were a crystal clear aqua. I tried to absorb every moment, to memorize every detail so that I would always remember. I was in Anguilla, and I was getting married!

I remember being amazed by a wild hermit crab crossing our path as my mom and I were walking to the resort for breakfast. I had hermit crabs as a child, bought on the boardwalk at the Jersey shore. I had never seen one in the wild. It was beautiful.

I didn't realize that, in many ways, my encounter with the wild crab would be the highlight of my day. My wedding didn't go as planned, nor was it what I envisioned when I was younger. I didn't have a wedding disaster that would land me on the Dr. Phil show. My sour memories resulted from a culmination of events.

As I was getting Scott's clothes ready for the wedding (he was on the neighboring island until the wedding) I realized that my cat Sophie had urinated all over his shirt. We tried to air it out, but the damage was done. He reeked of cat urine, and there was nothing I could do.

My mom and I had appointments to get massages and our hair done for the wedding. We arrived at the ritzy Cuisinart Spa and were quickly ushered into the swank changing area. We both slipped on our terry cloth robes only to discover that they didn't fit. The "one size fits all" robe was not ample enough to cover our wide American bums. The attendant must have heard us laughing because they immediately brought larger, slightly uglier robes to wear. Despite the bigger robes, we both felt like beached whales and it was difficult getting into the pampering mood.

I was specific that I wanted a non-denominational wedding ceremony. Unfortunately the Officiant ignored my directive and delivered a religious service. The flowers were ugly and the cake was horrible. I missed my friends and my family. I underestimated the difficulty I was going to have walking on the sand in my prosthetic. I was limping and my gait was awkward. I never felt pretty.

My wedding was missing the "feel" of a wedding. It felt like a family vacation with a wedding one afternoon. I never felt like the "pampered bride" as we were busy trying to keep our families entertained. The trip was the antithesis of romantic.

We have a video of our ceremony which I have never viewed. I tried once, but became overwhelmed by regret and turned it off. A destination wedding is an ideal option for some couples. I realized too late that it wasn't right for me. I regret the way in which we were married, but I've never regretted marrying Scott.

This morning I woke up to the sounds of our cats fighting. Robby was crying because he had "a boogie on his finger" and didn't know where to put it. Before I could grab a tissue he had wiped it on my nightgown. Six years ago today I was wearing a white dress covered with lace. Today I'm wearing a pink nightgown covered with stains and now boogies. I wouldn't have it any other way.
Happy Anniversary Scott!

Pole Sliding

Yesterday was the first day in nearly a month where the heat wasn't intolerable. Anxious to make the most of the nice weather, I decided that it was the perfect day for a picnic. I packed the cooler full of sandwiches, drinks and snacks, and we headed to the park. Scott, suffering with a stomach flu, opted to stay home.

The playground was full when we arrived. Kids were running, jumping and swinging everywhere. Robby was excited to join in the fun and scurried off as soon as I unbuckled the car seat. I lugged the cooler up the stairs and claimed a picnic table in a shady area.

I learned that there is a unique heartbreak reserved for parents as they watch their children getting rejected. I watched as Robby approached several little boys and innocently asked them if they wanted to play with him. I felt a stinging pain with each curt "No" that Robby received. Undeterred, Robby kept asking for a playmate. I wanted to scoop him up and take him home, but I also knew that I wasn't going to be able to protect him forever.

All of the children at the playground, with the exception of Robby, were older and participants in a day camp. The kids all knew each other and weren't interested in expanding their play circle. Knowing the reasons behind Robby's rejection helped, but it was difficult to explain to my sweet little boy. He simply wanted to play and didn't understand why nobody would play with him.

I was relieved when the bus pulled up and the unsociable little urchins were loaded and carted off. Robby and I had the playground to ourselves, and I was determined that we were going to have a good time. We quickly ate our lunch and set out to conquer the equipment.

Robby gravitated towards the firetruck play structure. He took the wheel and asked me to be the look out. I shouted out dangers and he steered the truck towards safety. We pulled imaginary hoses to douse fires. We stopped and filled the truck with gas several times. Once, Robby even let me drive. Then "Fireman Robby" spotted a cat stuck up a tree.

We took off running through the upper deck of the structure towards the fire pole. Robby fluidly grasped the pole and slid down. I tried to follow. I landed with a hard thud.

Half way down the pole I realized that I made a mistake. I felt a twinge in my back, and I knew I was in trouble. "Fireman Robby" tried to help me by performing first aid. Unfortunately he is only four, so his first aid skills are limited to throwing mulch at my stomach while telling me that it was a band aid. He was also lacking a bedside manner as he seemed irritated with my slow recovery!

After lying still on the ground for several minutes I was able to roll over slowly and stand up. After pulling mulch out of my hair and straightening my shirt, I told Robby that we needed to go home. He protested briefly but was easily bribed by the promise of a cupcake. I lugged the cooler back down the hill. I looked like a limping letter C.

I had to call Scott to come and help me into the house. It was then that I realized that I had hurt not only my back, but also my pride. I really need to stop trying to be young- it is becoming painful!

I spent the evening lying on my back, alternating between ice packs and heating pads. Scott and Robby went to the pharmacy and picked up my muscle relaxers and a chocolate cupcake. I wanted to take a bath in my jacuzzi tub, but thought better of the idea. Getting out of the tub with one leg is an feat in acrobatics in and of itself. We were fairly confident I would become stuck and the jaws of life would have to be called to pull me out of the tub. My ego had suffered enough blows, so I settled for the pills and my cupcake. Medicine for my back and my pride.

Robby told me that I was a good fireman, but that I need to practice sliding on the pole. He keeps bringing me cars and dinosaurs, promising me that the toys will make me feel better. On the positive side, he seems to have forgotten all about being rejected.

Speech Therapy, The First Lesson

With all of my experience working with blind babies and children, I thought I was prepared for motherhood. And then Robby was born, and within 10 hours we learned that he had failed his hearing test in his right ear. After several attempts, the hospital said that he was okay but needed to be rechecked in a few months. My Mommy instincts have been telling me that something is wrong.

Robby is now four and we are still trying to grasp the extent and implications of his hearing issues. We are scheduled for more audiological evaluations in the fall and, although we are hoping for good news, it is obvious that there are issues that need to be addressed immediately. Robby was a delayed talker and his speech is difficult to decipher.

I become defensive when it comes to Robby's speech issues. Although my special education experience has taught me the opposite is true, my "Mommy heart" continues to believe that perhaps I am doing something wrong. I suppose that blaming ourselves for our children's developmental "hiccups" is a universal practice among mothers.

This is my last year with Robby until he enters kindergarten, and I am feeling the pressure start to mount. I know that I have 14 months, but I am dreading his first day of school. The thought of him getting on a bus and leaving home brings tears to my eyes. This is going to be an emotional year.

I want him to be as prepared for kindergarten as possible. I want him to be comfortable and confident. I want him to be nice to others and to make friends. I want him to know that his opinion and thoughts have value, and that he needs to listen to others. I don't want him to be ridiculed because of his speech issues.

Scott and I have decided that Robby needs speech intervention. Luckily, I knew exactly who to call. Vicki and I met nearly 10 years ago when we had students in common. She is not only the best speech therapist I know but also is a terrific friend. Vicki is such a good friend that she agreed to help with Robby but scoffed when we offered to pay her. She was emphatic that she would only accept Chick Fil-A nuggets and my homemade Blueberry Buckle for payment.

Robby and I met with Vicki last night for our first "informal" lesson. We are beginning with the "F" sound because that is the most tactile. After making the sound several times in front of Robby, I asked him to try. He tried but succeeded in only spitting in my face and spewing the remnants of a chewed french fry in my hair. Perhaps Chick Fil-A was not ideal location for a speech lesson.

I was given two homework assignments to work on with Robby during the next week. We will continue practicing the "F" sound, and Scott and I need to deliberately slow down and enunciate our speech. It feels unnatural trying to speech at a slower rate, but Robby is missing a lot of the sounds because we are speaking too quickly. Slowing down is supposed to help him hear the sounds that he is not emulating.

Last night I was determined to speak slower. Scott and I were cognizant of our speed as we spoke not only to Robby but to each other. My mom thought I sounded a bit odd until we explained the rationale. She promised to help when she is around Robby.

Robby has not grasped the purpose behind our slower speech, but he has certainly picked up on the change. He has begun copying our exaggeratedly slow speech patterns. Now I have a little boy mispronouncing words and spitting with every "f" sounds all while speaking like a robot whose batteries are dying.

Actually, I should amend that--I now have a four year old boy, still in diapers because he has a severe poop phobia, who is talking like a lethargic, spit-spraying robot with a speech delay. Just when I wanted to pull my saliva soaked hair out, he told me that we are "best buddies" and gave me an unsolicited hug. That sweet statement has made all of this frustration worth it!

I Forgot, Again

My cousin Ellen is having her first child in a few weeks. It seems like only last year she was running around with pigtails telling me how she learned to make butter in her kindergarten class. Now she is a wife and is pregnant with a little boy of her own. Time is moving too quickly!

We are a close knit family who takes full advantage of every opportunity to get together to socialize and eat cake. Her baby shower was turned into a full family picnic. This meant that the men in the family were not only invited, but also expected to attend. Scott, Robby and I piled into the car on Friday and drove to my mom's house this past Friday in anticipation of attending the picnic shower.

Saturday was beyond hot. The oppressive heat made it difficult to breathe outside, and the air conditioning working overtime just to make the indoor climate tolerable. Despite the temperature, it was wonderful seeing and spending quality time with my family. Good food, a lot of laughs and tasty cake made for a delightful afternoon.

In order to entertain the kids and to provide a respite from the heat, a Slip n' Slide and sprinkler were set up outside. Robby was anxious to start slipping and sliding. As soon as he finished eating he was tugging on my arm to accompany him outside. Scott brought me my activity leg (my Proprio is not water friendly) and we headed outside.

As soon as the water was turned on I realized that, although the members of my family are fun, they are not adventurous around water. My Aunt Corrie and I were the only adults playing in the sprinkler with the kids. I was the only adult to venture down the Slip n' Slide. Apparently my family has no qualms making the one-legged woman demonstrate the slide as long as they were able to remain dry!

Despite the water-wimpy adults, I had a blast playing in the water. Robby and I were soaked and tired by the time we were ready to leave. I threw on a dry sundress, slipped a sandal onto my foot and put Robby in a fresh set of clothes. He was tuckered out from the afternoon water games and slept the entire trip back to my mom's house.

Saturday evening, after dinner, we decided that the only thing that would have made the day better to go out for ice cream. Scott and I packed up Robby, took my mom's to-go order, and headed to the local ice cream stand.

Robby happily skipped out of the car towards the long line. Assuming his place in line, he began to chat about what he was going to order. I noticed that I was receiving a lot of looks from bystanders. I always receive more looks when I'm wearing my sundress because my prosthetic is more obvious. I ignored the stares and hushed whispers and concentrated on picking my sundae components.

It wasn't until I got out of the car after returning from the ice cream stand that I realized the fodder for the stares. I hate it when I do that! Yes, I was half barefoot and hadn't noticed, but apparently the half of my hometown waiting in line for ice cream did!