Luncheon Time

I have been bummed out the past few days about the issues surrounding my residual limb. Walking and standing have been uncomfortable, verging on painful as the day wears on. I have been reminded that I'm reliant upon a prosthetic with each gingerly placed step. I don't need a reminder, especially when it hurts!

Yesterday, I had to put my prosthetic and limb woes out of my mind as I got busy working. With an imposing To Do list, I anticipated spending the entire day toiling in the kitchen. My prediction was correct. I started working at 7:30 am and didn't finish until nearly 8:00 pm.

Scott's annual graduation luncheon is today. He started this event 6 years ago as a way of rewarding his students for successfully completing their internship program and to celebrate the graduation of his seniors. Over the years the luncheon has become a tradition and it has taken on a life of its own.

Scott is the transition teacher at the high school. He works with special education students to develop work skills and experiences. He matches each student with a business in the community that matches their interests and goals, and the students work at their jobs everyday. Scott monitors their progress, visiting the various work sites to teach applicable job skills and to thwart any issues. He also teaches several classes related to job skills, with topics ranging from how to complete a job application to how to tie a slipknot tie.

Socio-economic issues (he teaches in an urban school) impact the type of celebration graduates of his program receive. I suspect that most don't receive a lot of revelry when they graduate because they have earned a special education instead of a standard high school diploma. I am not sure of all of the reasons, but I do know that for the majority of these young graduates, our luncheon is the only special acknowledgment and celebration they will receive for this occasion. We strive to make it special because they deserve nothing less.

Yesterday, I made six batches of fresh pasta. (If you have never had homemade pasta, the taste cannot be compared to boxed noodles. Unfortunately, it is also laborious.) Thankfully I have a fantastic kitchen helper. Robby turned the crank on my pasta machine as we worked for hours. It turns out that he likes to make pasta!

After the noodles were cut and packed away, we turned our attention to making yeast rolls. We made 90 rolls. We only have 80 take to the luncheon-- it also turns out that Robby likes yeast rolls!

While the roll dough was rising, we baked four batches of brownies and a large pound cake. We made one gallon of spaghetti sauce and a gallon of Alfredo sauce, all from scratch. I was grateful that I made the breaded chicken strips and baked meatballs on Wednesday because I don't think I could have done anymore cooking yesterday.

I went to bed last night exhausted but satisfied with the amount of work we finished. My leg was sore and my bone spur/bursa felt like it was burning. I have no doubt that I will be in more pain today because of the amount of strain I inflicted upon my already hurt stump.

I haven't gotten out of bed yet, but I've already taken Advil. I don't have time to let the pain slow me down. Today, I get to co-host a graduation luncheon. I love seeing his students, and Robby adores going to Daddy's work. It is going to be a good day, despite the leg pain that I'm feeling.

T..t...t...time for my new project!

I believe that every person has something that is "wrong" with them. For some, it is more obvious (such as my amputation). Others are able to disguise their imperfections and keep them private. Robby, unfortunately, has problems hearing.

We are in the process of sorting out his precise hearing issues, but we have some concrete information. He doesn't hear well out of his right ear, so he has a difficult time with sound localization. Although I find his voice adorable, I realize that he has some significant speech issues.

I'm lucky that my friend Vicki is a speech therapist. She has been working with Robby since the summer and we have been making progress. Perhaps because I know that kindergarten is looming (incidentally it is referred to as "the 'k' word" in my house) I have been feeling increased pressure to refine his speech.

Robby becomes so frustrated when he is not understood. I am able to decipher his speech and have become so accustomed to the sounds that he substitutes that I sometimes forget that his patterns are not normal. I don't want him to become the subject of taunts and jokes because of his hearing and speech problems. (I worry that I'll whip my leg off and hit somebody over the head with it if they make fun of him.)

I feel guilty for becoming lax with his speech therapy. Although we haven't stopped working with him, it has lost the sense of urgency and priority that working with him deserves. Somehow life got in the way. I know that guilt is part of being a mother, but I've got a severe case right now!

I am redoubling my efforts to refine Robby's speech. Vicki gave us some picture books to use with him to help isolate sounds, and we're already hearing improvement. After working for a few days, Robby looked at me and said, "Momom, you are t.. t.. t... terrific!"

His sweet statement was then followed by, "Hey, I made the t sound. Did you hear that? T...t...t...t." He is very proud of himself. He has mastered the illusive t sound, but unfortunately now he sounds like he has a stutter. Every t sound is repeated, from t..t...t...tv to t...t...t...timeout. I guess I now have my project for when I'm recovering from my revision surgery this summer!

Change of Plans

Everything has been going well for me during the past few months. Professionally and personally, I have felt as if all of my efforts have finally been reaping results. For the first time in a long time, it seemed as if I was on a clear path with all of my goals within sight. I was excited about the months ahead and busy making plans for the summer.

I should have known better than to start making plans! Yesterday I went to see my prosthetist and everything changed. I have been experiencing a lot of pain when walking. My limp has become more pronounced, and lately I have been begun avoiding activities in order to favor my sore stump. My socket felt like it wasn't fitting correctly, and I suspected that it was time for a change.

Upon examining my limb I was told that I have experienced a "complete failure" of the skin flap overlay. In essence, the skin that is supposed to be secured to the front of my limb, providing some protection and cushioning for the bottom of the tibia, has fallen. I now have a handful of loose skin dangling behind the bottom of my stump, providing no protection for the tip.

I've noticed recently that the skin has begun to fall, but for some reason I failed to make the connection between the skin flap failure and my pain. I am now waiting for a call back from my surgeon. Between the flap failure and my bone spur/ bursa, I am not going to be able to avoid surgery any longer!

The last thing I want to do is go for another surgery. More than the pain (that is fleeting), I am dreading the recovery. I won't be able to wear my leg. Without my prosthetic, I won't be able to walk through the woods, run with Robby or play in the yard. For a few weeks, I will be limited. I hate being held back by anything, especially my amputation!

This summer, instead of running through the sprinkler and fishing at the stream, I will be relying upon my knee scooter while my limb is bandaged. Getting a revision surgery is NOT my idea of a fun summer. I realize that I'll be relieved when the pain is behind me, but I don't have to be happy about it right now. Sometimes, being an amputee and having to deal with socket issues, prosthetic woes and revision surgeries stink!

Maybe I'll borrow a page from Robby's book. Do you think that screaming as loud as I can while pounding my fists into a pillow will make the looming surgery disappear? What if I threaten to run away, and then hide behind the couch? Nah, I suspect it won't make a difference. After all, it hasn't worked for Robby either!

How Do I....

Recently I have been contacted by several new amputees who have become "friends" with me on Facebook. I enjoy being available to answer questions and support. In many ways it makes me feel useful in ways other than doing laundry, cooking and reading countless primer books.

Many new amputees are concerned about how to care for their liner. I wash mine daily with mild soap, but I avoid soaps that are heavily perfumed, although I have become more lax with time. I've realized that, more important than the soap that I utilize is the amount of water that used. Be sure to rinse thoroughly to remove the residue completely.

I was hyper vigilant about keeping my liner squeaky clean when I was a new amputee. In my typical overzealous fashion, I even put it in the washing machine- with Tide detergent. That was a big mistake! My leg quickly became covered with bumps and painful welts because the strong detergent failed to completely rinse away, and it took three more washings, with just water, to render the liner usable again. Although I still occasionally throw the liner into the washing machine, I never use detergent!

When I had my first prosthetic fitting I was both discouraged and disgusted to learn that I should avoid shaving my limb because shaving opens the limb up to a variety of potential dangers, ranging from nicks and cuts to ingrown hairs. I begrudgingly heeded my prosthetists advice and I have not shaved my stump. However, I was pleased to discover that much of the hair falls off as a result of wearing a liner and prosthetic. (If removing the hair is still a priority, I have met a lot of amputees who have successfully undergone laser hair removal on their limbs.)

Sweating in my liner used to be an embarrassing issue for me. During hot weather, or after working out, I used to remove my liner several times a day and literally pour out copious amounts of sweat. When the weather is forecast to be hot, or if I know that I will be exercising, I spray my limb thoroughly with antiperspirant. I found that spraying three full coats, and allowing each application to thoroughly dry, has thwarted the unsightly and uncomfortable issue.

I have found that Certain-Dri works best for me, although I have heard other amputees prefer Secret Platinum. I tend to avoid deodorant configurations in order to keep reaction potential to a minimum. However, I suspect that application, rather than product, has more impact on the success.

Much of what I have learned has been through trial and error. I realize that no amputee has all of the answers, and what works for one person may not work for somebody else. I am simply providing my experiences, and hoping to help.

Meow

I had a truly lousy day. Between my leg hurting and worrying about family members, I was tired, sad and stressed. To make my mood even more sullen it was dreary and rainy all day.

I didn't feel like cooking and was fairly sure I wasn't going to be able to stand long if I was inclined. We decided to take Robby to Chick Fil-A tonight for Family Fun Night.

It's amazing how a free face painter and a happy little boy can make a bad day suddenly feel not so horrible!

Prom Night!

I never attended my high school Prom, an unfortunate fact that continues to stick in my craw. I did receive an invitation to my prom and I was thrilled. Unfortunately the invite was rescinded (in the middle of the cafeteria with an audience) about 90 minutes later. After informing me that he wasn't going to be taking me, he continued by explaining that he had received a "better offer." It has been nearly 20 years, but I still feel the pain of that event. (I do take solace in the fact that my life has turned out far better than his!)

When my friend Kristie asked me to help her set up and chaperon a Special Needs Prom that she was hosting at the local high school, I jumped at the chance. I could not think of a better way for me to spend the evening than helping a friend, getting dressed up and living vicariously through these wonderful students. Students enrolled in Severe and Profound disability classes throughout the county were invited to attend.

Saturday evening I got dolled up and headed out to the prom. My going out in the evening is a rare occurrence. Actually, I can say with certainty that this was the first time I went out for the evening without Scott and/or Robby in tow. Robby apparently did not handle my absence well. He cried for nearly 30 minutes (until his Daddy took him to the park as a distraction).

After decorating and setting up everything, we were both exhausted and excited. Although the Prom was being held in a school cafeteria, we wanted to make it as special and memorable as possible. Every detail was anticipated, from providing corsages and boutonnieres for the students to my acting as the official photographer.

As the students and their escorts (in many cases their parents) filed into the cafeteria I couldn't keep the smile off my face. The girls were dressed in beautiful prom gowns, and the boys were dressed in suits or tuxedos. Even the parents got into the spirit by donning fancy dress clothes. I immediately sensed how important this event was both for the students and for their parents!

If you ever want to know what joy looks like, make somebody with a severe disability happy. The social filters that keep emotions in check are gone with this population. Squeals of joy, loud laughter and off key singing echoed through the hallways of the otherwise empty school.

Wheelchairs and walkers, leg braces and hearing aids did not garner second looks at this dance. (Even this nearing middle aged amputee didn't get a second glance!) The students were free to simply have fun and to be happy. They (or their parents) did not have to worry about blending in with their non-disabled peers. It was their Prom night, and they were going to celebrate without the pressures of fitting in.

I doubt that my high school peers had as much fun at their prom as I had Saturday night! I am so glad that I was asked to help so that I could be a part of this very special event.