Hotel Living

I was looking through some decorating magazines today and there it was again. It’s an obsession with “hotel” living. There are “hotel” linens, everything from sheets to comforters to bath towels. Presumably, this is so, we can have our homes look just like a fancy hotel. What?

In the past, it used to be that we wanted things to look like home or even be “homey”. We had people like Martha Stewart tell us how to make our homes look more beautiful. We have a whole network devoted towards home and garden television. And yet, we want things to look like a hotel.

I never understood this. I used to travel as part of my job. Travel was always the least favorite part. I love flying, especially the take off, when you are in a huge jet. The faster, the better. I love experiencing a new city. I love seeing new things and getting a different perspective. I enjoy dining with my clients or my friends. However, what I never enjoyed were the hotel rooms. Always, very generic. Even worse, were the bathrooms: very bland, almost always neutrals, and somewhat utilitarian. The faucets, especially the showers, are plain. I am never guaranteed a really hot bath. Sometimes, I get lucky. What I dislike most, is that none of the rooms are personal. There is absolutely nothing to remind you of home. Sure, you can bring things from home, like they recommend in the magazines. However, my suit case is usually filled to the brim and the last thing I am going to bring is extra stuff. Even worse were the bed coverings or comforters. I could never get out of my mind all the people who slept in the room before me.

It’s also not about extravagance. Yes, certainly, some of our homes are more opulent than others. Some are beautiful and some are not. But the best part is always walking through the door and knowing you are home. It’s about being surrounded with things that you love, whether it’s beautiful artwork, a chandelier, pictures of family, beloved pets and/or your children. It’s about good home cooked meals with vegetables from your garden. It’s about making recipes that have been handed down through generations. It’s about looking out over your own garden and having your own flowers on the bedside or kitchen table. There is nothing better than sleeping in our own beds or taking a candlelight bath in our own bathroom with faucets and lighting that we have selected. At home, everything is perfect for “us”. At home, your house is different than your neighbors. In a hotel, we all have basically the same rooms, just more luxuries, depending on how much you are willing to pay.

And it’s not about staying in nicer hotels. That’s totally missing the point. It’s not about money or style, but about being “personal”.

There’s also a trend with industrial or restaurant style kitchens. Every kitchen looks the same: granite countertops and stainless steel appliances. Boring!! Very boring! I remember one kitchen that I saw on t.v. last year. It was created by Paula Deen of the Food Network’s Paula’s Home Cooking (who I love!). She designed a kitchen for a young couple. What was great about this kitchen was the attention to detail and the personalization. The kitchen was done in the couple’s favorite color, blue. It featured a salt water aquarium (she worked at the zoo if I recall with the sea lions), a cobalt blue Aga range, a Tiffany lamp and a hand carved round cutting board carved with sea lions. It had a custom granite countertop in a rare shade of blue. What I loved most about this kitchen was that it reflected “their” taste and was extremely personal. (Okay, I did love the stove too!) It was not industrial and it was not like their neighbors. How many people do you know that have a cutting board carved with anything, let alone sea lions?

People’s obsession with hotel living I think comes in part because we have gotten away from personalizing our homes. We have so much now, that we can go out and do so many things, that we rarely spend time at home. I watch home and garden television and am amazed at how many shows will depict someone’s home with “white” walls. Of all the colors in the world, I fail to understand why someone would have “white” walls. True, some people don’t have a knack for interior design but how can you expect to be your best and do your best every day if you have an environment that is lackluster or downright boring? I’ll never know. In the meantime, I’ll go back to looking at my magazine, trying to find ways to personalize my home.

Mondays

I secretly love Mondays. I say “secret” because nobody really likes getting back to the beginning of a work week. But for me, it gets back to the “order” of the week and I definitely like things in place.

I have always been organized. You can thank the Girl Scouts for that. I remember being in grade school when I read the Girl Scout Handbook. Somewhere in there was the phrase, “A place for everything and everything in it’s place.” I took to that phrase like a duck to water. I started cleaning and organizing everyone, even if they didn’t want too.

My sister wasn’t too thrilled with this. Apparently, she can recall in vivid detail, my perfectionism as we were growing up. This is from the same person, who tended to wash more of her money because she "forgot" it was in her pocket; this is not however to be confused with the term “money laundering” as it is used today. I however, would have no such thing. My money, if I kept it, would be lined up with the heads straight up and in order. My sister can also recall, with precise detail, the order of the items in my dresser drawers or the order of my nail polish. She is especially fond of remembering these wonderful memories at really large gatherings.

Our bedroom though would be perfect for today’s organization shows because we could save them a lot of time. We had a before and after in one room. They could just take a picture of the left side of the room and call it the “before” picture and then take a picture of the right side of the room and call it the “after”. It used to infuriate me when she would come over to my side of the room, because hers was such a disaster. I secretly prayed for my own room someday.

My mother was not fond of my superior organizational skills either. At issue, was the time I organized her entire kitchen while she slept. I have always been a night person and happened upon an organizational self help book. This was back in the late seventies, way before organization shows took over. I read this book cover to cover one night. It was that night that I discovered my mother’s kitchen was all wrong. She did not have any zones. Her cooking zone wasn’t near her prep zone and you can imagine what would happen. Total chaos! I decided my mother should have the best so I took everything out of her 44 cabinets and drawers and reorganized them into the “proper” zones. I alphabetized her spice rack and had the kitchen sparkling before I went to bed. Martha Stewart would have been proud. But she is not my mother.

My mother had a fit. She yelled out to me at 5 a.m. and ordered me to come down and put her kitchen back in order. ASAP. I tried to reason with her and explain the zone thing but she didn’t care. She said her kitchen was working just fine and that when I got my own home, I could do whatever I wanted. That pretty much ended my organization.

So, it wasn’t too long ago that I was looking for something to do. I had organized and de-cluttered everything with the exception of one area, my desk. I like to think of myself as a creative type and didn’t like that it was a mess. I mean, what if there was a fire and my apartment was on the news with a messy desk? I went on-line to look for some tips and discovered the flylady (www.flylady.net).

The flylady is not an organized person however she helps other people get organized. She’ll be the first to tell you that she is not organized however she started putting things together and now has a website. I know she is not organized because the first time I went to her website, I was like, “what the xxxx?” Everything was all over the place. But, what the flylady does well is this cleaning system or schedule. We have the Weekly Home Blessing, which consists of six chores you do every week. Then there is the Zone Cleaning. She divides your home into zones and then each week of the month you do deep cleaning in the zone. By the end of the month, you have done all of the zones and your home is what I call, “spring clean ready”. You have daily chores too for each room and also your morning and evening routines. It sounds like a lot but it’s easier than it sounds. The best part about this whole system is that you have your weekends free. That means, no cleaning. She says Friday is Date Night; Saturday is Family Fun Day where you spend your entire day with your family. Sunday is Renew Your Spirit Day. She says that you need to get rid of your clutter or “stuff” which she likes to refer to as “SomeThing Undermining Family Fun”. She says that when you clean, you bless your family. Apparently, my dear son is really blessed!

So you can imagine, being an organized person, how much I enjoy the flylady. She also has you break down your week into a Basic Weekly Plan and each day of the week has a different focus. For example, Monday is my Home Blessing Day, Tuesday is my Medical Day, Wednesday is Errand Day (groceries, gas and such), Thursday is Zone Clean and Partial Desk Time and Friday is Paperwork Day. This is all of course, on top of working outside the home. She has a lot of other things too but that’s the gist of it.

So the reason I love Mondays is because I get to start this process all over. Please don’t tell my mother though, it will drive her crazy.

Perspective

When dear son was born with special needs, I never imagined how different it would be. People are competitive and it starts at birth. Everyone thinks that their kid is the smartest and they proceed to let you and the world know that Johnny sat up at two days, walked at one week, etc, etc. It’s not only that their kid is smart or talented, but that they are 100% responsible for this. They tell you about their child like an Apple Computer product introduction where they tell you about the new device which is always smaller, faster, lighter than the previous model. However in this case, these parents take full responsibility for their child’s achievements. As the parent of a special needs, it’s a game you will never win.

I remember distinctly being in the supermarket with dear son when he was young. A mother and with a small baby had him sitting up in the shopping cart. She looked at dear son lying in his carrier, then looked at me, and then smugly at her son in the shopping cart and then commented on how great it was that he was sitting up. I was thinking to myself that it wasn’t a fair playing field but she would never know. The thought of a child not being able to do something would have been totally outside the box for her.

The game goes on as the children grow older. Recently, a woman was complaining at work over the cost to send her brilliant son to an Ivy League School. The tragedy, according to her, was that her and her husband had only saved enough money to send him to a state college, never dreaming that he would be attending an Ivy League School. I couldn’t help but envy that while wondering if dear son would ever sit up again.

So you can imagine my surprise when I received this e-mail from a friend of mine. To give you some perspective, my friend is the mother of a special needs child as well as two other children. Her daughter, has sacral agenesis and/or caudal regression as it is sometimes called. She has microcephaly, hearing loss, partial cleft palate, is severely retarded and has no bowel or bladder control. She also has scoliosis and kyphosis and wears a body brace. She is twelve years old and weighs 40 pounds. She has two other children, a fourteen year old son and seven year old daughter.

Recently, she had told me her older son. He was invited to a math competition and she told me about the conversation she had with him prior to going into the competition. I proceeded to inquire, in a follow up e-mail, as to the outcome of the competition. I told her that she must be proud of him, because he is so smart. She gave me the results of the competition and told me how excited he was and how happy she was for him. Then she said the most amazing thing.

“As far as his smarts go, I am not really proud about it. He was born that way, you know? Just like my daughter was born the way she is. I figure it was the roll of the dice. I'm much prouder of his kindness and things like that. I just like him as a person and that's the best!”

Yes, that is the best.

Isolation

I come to love these blogs that I read. There are so many interesting ones and I must confess that I typically limit mine to healthcare. I made my professional career transition to healthcare fourteen years ago after the birth of my son. It wasn’t really a career transition so much as much as the fact that I switched industries, to focus on healthcare. I work on the business side of healthcare as I like to call it, since it truth be told, I have an incredibly weak stomach. That is not to say that I would choose to work in direct contact with patients with a stronger stomach, because I would not.

As the mother of a Special Needs child, I am in a special group. Special, as in isolated. It’s not that I am treated differently or poorly because I am not. But at some point, you realize that your life is incredibly different.

Take for example, a typical neighborhood scenario. We moved into our last neighborhood when dear son was three. We made friends with the neighbors and socialized with them at various parties. It was a fun time and a time when everyone was decorating their new homes and having babies. Dear son was three so we fit right in. It didn’t seem to matter that he was in a wheelchair because I would simply take dear son out for his daily walk and walk with other mothers pushing their newborns in their strollers. At some point, the walks would stop, because the babies had grown and could now walk on their own. The scenario would be repeated year after year. I continued to walk dear son with the new mothers but eventually alone. By that time, most of the families were finished having their children and I was still raising dear son.

The parties began to change soon too. In very subtle ways. The parents of children who played sports together would inevitably get together and begin talking about the latest practice. This would lead to car pooling to get the kids to practice and eventually to other activities. It really never mattered what the commonality was, the fact that your child is disabled is never something where there is much common ground. How can they begin to understand being airlifted? To most of these parents, the fact that their child would need an x-ray after playing soccer, is a major medical crisis. Dear son has been airlifted three times over the last few years. Most people can not relate to that.

It also doesn’t matter if it’s at work or at home in a neighborhood. Most of what you experience as a parent, it not water cooler talk nor is it something others particularly care to know. That doesn’t mean it’s bad, it just the way it is. (As for support groups, please don't recommend them, they are not helpful.)

One of the places where I am most comfortable, is in a medical setting. 95% of my day is spent in some way caring for my dear son. So, the best part of these blogs is coming home. Reading healthcare blogs and especially physician blogs, give me some great perspective and well as some good reading. It is the one area where I feel like I belong. I remember being particularly excited the first time I read FatDoctor’s blog. I quickly e-mailed my friend who has a child with severe disabilities. I told her that it’s pretty cool reading her blog because it gives you an idea of what the docs are thinking when you go in for an office visit as well as a different perspective. She fell in love with them too.

So the point today is just to say thanks. It so exciting to read about everyone’s day. Even nicer is when different scenarios are presented as food for thought. I feel like I have gained so much from reading all of these blogs. I am definitely addicted.

Everything’s Coming Up Macy’s

On Friday, Marshall Field’s on State Street in Chicago will formerly change their name to Macy’s. I am kind of sad to see the old Marshall Field’s go and the new retailer take over. It’s kind of like a new best friend, one who can never replace the one you had for for some thirty five odd years.

I remember the first time I started shopping at Marshall Field’s. At that time, Marshall Field’s was quite the prestigious store where the sales people always dressed immaculately and your purchases were wrapped in tissue and put in the famous green bag. It was back in the days when you thought that not just “anyone” could work there. You had to be attractive, very well groomed and possess that special something, the kind of thing that in your mind you know Miss Manners would always approve of.

I remember being thirteen years old and saving my baby sitting money so I could buy my clothes at Marshall Fields. My father died when I just turned thirteen and some time after that, I began babysitting to make extra money as well as started buying nearly all of my own clothes. I loved shopping there because I felt very special. I loved having my purchases wrapped in that special tissue paper. The sales people always took the time to fold your purchase perfectly before placing it in tissue and handing me that special green bag. I carried my bag proudly feeling that I was a very classy woman to be carrying it.

My mother wore Estee Lauder cosmetics. I remember growing up with the smell of Youth Dew after she took her baths. You always knew a lady had been in the bathroom before you. I imagine for my mother, this was a luxury since she didn’t work outside the home. While other girls started out with Cover Girl or Maybelline, I started with Estee Lauder. I always felt special buying my cosmetics there, because I knew the kind of woman I wanted to be, an Estee Lauder woman.

When I was in college, I would schedule my classes so I would finish up early on Fridays. I loved having the afternoon free because it meant I could go over to Marshall Field’s and make a purchase or at least look around at the fancy items that they had for the home that I would own someday. I would keep a detailed list of the items that I wanted to purchase, not being able to afford them all. I had a very clear image in my mind of what my home would be like, right down to the matching towels, all lined up in a row in my linen closet. I watched how they folded the towels so mine would look expensive too. There were some items that were out of my budget, like the Steuben crystal dolphin that I imagined would set on my coffee table or the fine silver place settings that were over $300 a place setting.

I remember saving my money to buy my first set of every day flatware. It was $50 and if you purchased a set of eight, you would receive a free wooden box, trimmed in sapphire blue velvet, to store your flatware. I picked out my place setting and went to make my purchase, only to learn that $50 was for “one” place setting and I would need to purchase seven more to get the box. This was an 18/8 place setting and I was crushed to learn that it would take me another seven weeks to earn enough money for the rest of the place settings. I would return each week and purchase another one, eventually “earning” the box.

Sometimes, I would stop at the Walnut Room. Back then, the Walnut Room was nothing more than an ice cream shop. My favorite sundae was “The Clock”. The Clock was a hot fudge sundae with a sugar cookie on top decorated in the shape of a clock to mimic the famous clock outside Marshall Fields. I don’t recall the cookie looking exactly like the clock but rather it was a yellow sugar cookie with a clock on it with black numerals. It would be much fancier today.

Today the Walnut Room is quite fancy with it’s mahogany walls and large crystal chandelier. It has a large display in the center of the room that is frequently filled with flowers in the spring or a large Christmas tree during the holidays. I always ask for a table near the flowers so I can smell them and admire them while I eat. The tables are covered with white linens however it doesn’t seem any different than any of the other stores or any of the other restaurants.

The clothes are no longer special, but rather the price ranges are all over the board and the selection no longer entails the craftsmanship of earlier years. The furniture department is old and stuffy, like the kind of room a decorating show would make over, only it’s an entire department. The service is no longer special. There is no more prestige. It’s like an old classy lady with cancer, never to return to her full splendor. I am going to miss her.

Once Is Not Enough

I was still sleeping when I heard his voice. At first, I couldn’t believe it. Was I still dreaming? It was the kind of voice that is forever embedded in your memory. It was soft, sweet and yet from the heart, the kind you never forget. Kind of like hearing a beautiful aria for the first time, the kind that sends chills down your spine. The kind where you desperately hope for an encore but it never comes. I waited quietly to see if I would hear it again, however it was not to be.

I remember the first time I heard his voice. It was years ago. He never talked at first. It seemed like I was talking to myself for the longest time however I knew deep inside, he understood. Our conversations, if you call them that, took place round the clock. Always one sided of course, but you could tell by his smile that he “got” it.

So today was wonderful. His voice was much deeper now, more manly. But oh, so sweet. It was only one word though, “Hi”. I called out to him and asked him to repeat it but I heard nothing. I waited some more and then asked again. Still nothing.

I got up and went to his room. There in his bed, was my son, smiling. He’s fourteen now. It’s been years since I’ve heard his voice. But this morning I woke to the most beautiful sound, “Hi”. I kissed him on the cheek and said the same words that I say every morning, “Good morning, beautiful doll”. I thanked him for saying “hi” not knowing how much time would pass before I would hear it again, if at all. Our days are growing longer and much quieter now since he sleeps most of the time.

His Dad and I speak daily. Sometimes we have the conversation on which life skills we wish he could have, if we had to choose only one. Talking and walking always come to the top of the list, but we can never figure out which one is more important. Would it be more important for dear son to tell us what he needs and wants or more important for him to run and play with the other boys? Our conversation is the type you have when the lottery stakes get really high and the news people ask people what they would do with the money if they won. Only it’s not a lottery and we are never going to win.

Sometimes, I dream of the conversation that my son and I will never have. I would love to hear about his day in the first person instead of reading the day’s events in the spiral notebook attached to the back of the wheelchair. Sometimes, when I am out somewhere, I envy sometimes the excitement of boys talking to their parents telling them about their day. I envy them when they are arguing too because some language is better than none. They don’t know it of course, because they are blessed. As it should be.

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Mom Time

I can’t think of anything that I enjoy more than having a few minutes each day to myself. As a single Mom, my days are spent lovingly caring for dear son and anxiously awaiting my every other weekend when his dear Dad picks him up for the weekend and I get some uninterrupted sleep. My days feel longer now that dear son is growing so big and so weak; lifting 130 pounds several times a day tires me out and because he has no tone, it is mostly dead weight. Since he can no longer manage his fluids, he frequently coughs/chokes at night so I am up a lot repositioning him so he can sleep better. So this weekend was “Mom” time, where I planned to do nothing but sleep.

It was the day after Thanksgiving a few years back when I pleaded with my then dear husband for a few hours of time to finish up some work at the office. I had made a promise to myself when I started this job that I would no longer give all of my free time to my company. As I was driving in my car the sun began to shine brightly and it was clear that it was going to be a great day. At that point, ideas began to flood into my head about what I could do in a few stolen moments. After all, who would know?

Soon my car was heading towards the nearest mall. I parked in the garage and went into the famous Seattle based retailer, a favorite of mine. It was glorious to go through each department at my leisure with no sense of time. It is not often I would get a few moments to myself without having to care for dear son, a house or my job. As I was shopping the sales clerk pointed out the local news camera across the floor and told me if I was interested in being on camera that I should head over there. I responded that I had no interest in being on camera and that I really did not care for the limelight. I proceeded with my shopping making certain to stay away from the camera.

Hours passed and I was still there. It was more about having time to myself than doing a lot of shopping. Soon, it was getting quite late. I knew I would not be home in time for dinner. I left the store in the evening and headed home. On a whim, I decided to mention to dear husband that I stopped at the store for some lipstick, in case I was in crowd shot. Excitedly, husband turns on the 10 p.m. news to see if he can locate me in the crowd, if at all.

At 10 p.m. sharp the lead story comes on the news about holiday shopping. There I was, at the jewelry counter, making a purchase. They did a close up of my hands holding a piece of jewelry, a full head and body shot and then another shot of me handing over my charge card to the cashier. There was no one else in view other than myself. Not even the cashier was photographed. Not one single shopper. Anywhere.

So much for “Mom” time.

Dr. Rey, Hayley Rey and Me

Channel surfing the other evening led to me to Dr. 90210. Dr. Rey is the babe plastic surgeon on the show who concentrates primarily on young women in need of oversize breast implants. Dr. 90210 might be like a modern day Brady Bunch only instead of the three lovely girls, he has lots of lovely girls. In the Brady Bunch days, there would inevitably be a problem that was always solved in thirty minutes. We liked those shows for the simple reason that all the problems were solved so quickly. Unlike the old sitcoms where there was a new problem every week, it’s pretty much the same problem every week that is always resolved with Dr. Rey urging the women to go with the 500 cc implants. The show ends with the woman coming back in to see Dr. Rey and he asks her to remove her blouse where he admires his work and tells her she looks beautiful.

Today’s topic is Hayley, Dr. Rey’s wife. It appears that Hayley has a problem because she has dropped to 88 pounds. In this episode, Dr. Rey is going to find out “how” Hayley has gotten so thin (usually it’s calories in/calories out). Apparently, this is unlike the rest of the world because we usually don’t devote shows on “how” people got fat (O.K. Super Size Me is the exception) but this is a major problem.

The show shows Hayley pulling a scale out from under her sink in the middle of the afternoon and stepping on the scale. Hayley has on heavy jeans and a top. The thick jeans cause the scale to register at a full 88 pounds. Hayley gets off the scale and puts it away. This to me is not normal. I would never, ever just get “on” the scale. I get up in the morning and proceed with the “ritual”. The ritual involves making certain that I eliminate every possible thing that might contribute to a “false” reading. When I get on the scale, I never ever wear shoes. Not only do I not wear shoes, I weigh totally naked. While Hayley only weighed once, I might choose to weigh multiple times. If, for example, the scale did not record an “accurate” weigh in, I might choose to take the best two out of three weigh ins. I also would never weigh, in the middle of the afternoon.

Hayley knows she is not eating so she decides to keep a food diary. Her food diary, as far as I could see, consists of approximately ten days worth of eating on an 8.5 x 11 inch page. This is unlike my food journal which starts on an 8.5 x 11 inch sheet and sometimes goes on to the back side, depending on how things are going. Mine however, is only for “one” day. In the event that I don’t eat for a day, otherwise known as a “sick” day for you thin folks, I do not keep a food diary. Instead, I choose to weigh multiple times and record the weight in my “permanent” record.

A sample meal on Hayley’s food diary is, “Pizza pocket, Pepsi”. Some days, I noticed she had more than one meal. Hayley says that she is VERY stressed right now and she sometimes just forgets to eat. While she may forget to eat, she is not forgetting to write this down. In Hayley’s case, no cortisol is released and she does not have a big stomach.

My food journal looks a little different. A typical lunch for me is spinach (2 cups), toasted walnuts (2 tbsp), orange (peeled and placed on salad) with honey for a salad dressing. I also have a Boca Veggie Burger (Original Vegan), romaine lettuce, a whole wheat bun, diet iced tea. If I am stressed, I usually do not forget to eat. A really good option for stress eating might be Ben & Jerry’s Peanut Butter Cup ice cream. This however is called “emotional” eating. I also remember to write it down but usually choose not to. In my case, loads of cortisol is released contributing to a less than flat stomach.

Dr. Rey can not believe her food diary. He says something to the effect that he knew she was “losing weight” but he didn’t know “how”. Hayley jumps in and says that he knows how much she likes having a “curvy” body and she doesn’t like how she looks. Dr. Rey, trying to help Hayley out here, tries to cut her off mid-sentence and says something to the effect , “Hayley, it’s not about that, it’s about being happy with the body God gave you”.

O.K. Time out again. First, I have been watching the show for a few years now. Hayley has never been curvy. If you added twenty pounds to Hayley she still wouldn’t be curvy. But it gets more odd. Dr. Rey, a Hollywood plastic surgeon who makes his money helping women take their “God” given bodies and transforming them into the body of “God’s” says that she should be happy with the body God gave her. O.K. By this time, I am really enjoying the show.

Dr. Rey goes on to say that because of her eating, he is concerned because everything will be off-her electrolytes, etc. If I am not eating, I frankly don’t care if my electrolytes are off because I know it is only a temporary condition that will be resolved within a 24 hour period when I resume eating.

So, I’ll just have to tune in next week to see how Dr. Rey is going to handle this situation. As for me, I’ll continue to pay my weekly fee to Weight Watchers and watching Dr. 90210.

Fitness Tip of the Day

Opening my e-mail this morning, I came across the following fitness tip. It said to successful in your exercise program, you need to find the “right” activity. Answering these three questions will tell me if my exercise program is right for me.

Question number one, “Do I look forward to this?”
Question number two, “Do I enjoy this?”
Question number three, “Do I feel good afterward?”

If I answer yes to all three, then it’s an activity that I will probably keep doing. It gives me another tip that says that, “No exercise program will work for long if you have to force yourself to do it.”

O.K. So I’ll answer the quiz based on my current activity, the treadmill. No to question one, no to question two, yes to question three. (They don’t call it dreadmill treadmill for nothing.)

So according to this quiz, the treadmill is not for me. I have been working out on the treadmill for almost three years now. I do it because I have to. I do not have the luxury at my age to forgo a fitness program nor do I have the luxury to pay a sitter and go to the gym at my leisure. I also don’t enjoy it. I put on my headphones and use the music to get me through the workout. Do I feel good afterwards? Yes. I am glad it’s done and I have more energy to get me through the day.

But upon further examination, these questions just didn’t cut it. I exercise on the treadmill for a couple of different reasons. First, it’s easy. I get my son off to school, jump on the treadmill, get in a great workout, shower and start my day. Two, I have more energy for the entire day. Three, I know that by exercising I am increasing my metabolism for a 24 hour period and I will burn more calories. This is turn, will help me lose weight. Four, it’s a great cardio workout which will benefit my heart and lungs. Five, the incline work gives me a great backside and legs. Six, it makes my body look good.

Make no mistake, I think it’s great if you have fun with fitness and I totally agree that you will stay with it longer. But the reality is, I have a disabled child at home, I can’t afford a sitter and I can’t find a sitter who can lift 125 pounds, which is what he weighs. So it works. I also vary my routine in the summer and walk outside pushing my son in the wheelchair. I use a step counter to measure my distance.

If I were to be honest though, I think we need to look at this a little differently as we get older. If I had to create some questions to determine if an activity was right for me, it would be:

1. Does the activity increase my heart and lungs for an extended period of time?
2. Does the activity have a positive effect on my weight, my blood pressure and
my metabolism?
3. Does the activity give me more energy to get through my day?
4. Can I do this activity for the rest of my life?

Now if I were to answer these questions based on the treadmill, it would be a solid yes to all four.

The Cat

I can remember my earliest memories of getting our new kitten. The kitten would be a gift to my son and his first “real” indoor pet. I say indoor because we always seemed to have a menagerie of “outdoor” pets. They weren’t really mine of course, but they did show up at our house every day. We had Dolly and Donald, our mallard ducks. They came to our house every year for several years. Then there was Blackie, a red winged blackbird that came to our feeder every morning then sat on my son’s swing set until the school bus dropped him off every afternoon. We also had Red, the cardinal. I created all the names of course but I am not always at the peak of creativity at 5 a.m., which is when my son would like to start the day.

I had visions of our new kitten playing with my son, looking out the window together for birdies, sleeping together in son’s bed at night and basically, becoming his number one friend.

I purchased the cat and drove out to Pennsylvania to pick him up. This was no ordinary cat though. I purchased a Munchkin. For those of you who are not familiar with a Munchkin, it’s a cat with the dwarfism gene which causes them to be much smaller than normal cats (only 4-7 pounds full grown for a male) and their trademark, extremely short legs, only 1 inch tall and it includes their paws. I named him Wiggles.

My son and Wiggles go together like oil and water. My vision of the cat sleeping with my dear son was soon replaced with son giving Wiggles the boot out of his bed with his foot. Wiggs flew across the room and that pretty much ended the new sleeping arrangements.

My next vision of Wiggles and son looking out the window were replaced with the cat dangling from son’s mouth with his long black tail tightly secured in son’s jaws. Apparently, he got too close to my dear boy. My kitty was hanging out of his mouth and desperately waving his little paws trying to get some leverage on the bookshelf so he could get away. Without any legs, it couldn’t happen. It was a scene that was never repeated since Wiggles no longer gets near son’s mouth.

Now, my son does love Wiggles. He especially loves when the cat gets in any kind of trouble and gets reprimanded or worse yet, gets the squirt bottle. This sends son into huge belly laughs which I adore. Wiggles knows it too and plays along to make son laugh.

So I decided to recruit the cat to increase dear son’s utilization of his communication device. The communication device is a simple box with two buttons that you can program. It’s taken years for son to master. I thought perhaps if the cat used one, that son would enjoy it and use his more. I set up the cat’s device with two messages, one of which included the message, “I want to play with my streamer toy”, which was his favorite toy. So I took my cat’s paw and pressed the button. We played with the toy and the reinforcement took after one try. The cat would play and then I would drop the toy and he would race over to the communication device and keep hitting the button with his little paw until I would play with him and the game would start all over again. The cat loved it so much he uses it all the time. The only problem is that he won’t stop. So I had to take it away. Now I can’t have either one of them out because my cat will use it and the son will not. I had to put both of them on top of the armoire so the cat wouldn’t get it. Now, no one uses the communication device.

Top Ten Hospital Peeves

The school nurse sent me the information required for entry into the ninth grade. Part of that information required a current physical exam, on an approved form. The “health history” section MUST be completed and signed by the parent. I can not think of anything I dread more than the health history. When you have a special needs child, the health history is infinite. Most of the time I have to give the health history at the hospital, for each admission. My son is hospitalized a lot. It’s not just “one” health history that I have to give; I have to give a health history to every doctor, every resident, every nurse at every shift change. That’s a lot of history. So it got me thinking about my pet peeves as a caregiver at the hospital. I have limited it to ten.

10. Noisy nurses at night when you are trying to sleep.
9. Broken hospital chairs for parents to sleep on.
8. Failure of any hospital personnel to introduce themselves- This is not Cheers-everybody does not know your name.
7. Operational errors-We stayed at one hospital that only carried small and large diapers for children. My son was twelve and the large diapers were too big. This caused his diaper to leak every time he went to the bathroom which required more underpads, full bed changes and more hospital personnel (he required several people to help change him and roll him over). The cost for this error over the course of a day to this hospital was phenomenal.
6. Failure of nurses to know how to use a feeding tubes for meds.
5. Toilet Paper-Purchasing jumbo rolls the size of a 747 may be a good business practice on paper but I don’t enjoy tearing toilet paper sheet by sheet each and every time I use the washroom.
4. Bathrooms for Special Needs Patients-Most hospitals have handicapped bathrooms but placing a bench or a bed in there so I could change a special needs child would be helpful.
3. Covered Parking for the Handicapped-When I arrive at a facility, I need to have covered parking. I have to take the wheelchair out of the car and assemble it. I need to put some pieces on the ground. I need to take time to get the child out of the car and secured in the wheelchair. I can not do this when it is raining, snowing or any other weather conditions. If you want me to spend my health care dollars at your facility, I need to get in the building. How much money are we talking about? In 2004, my son’s billed charges were almost $400,000 dollars with 98% being spent at one hospital (we had six hospitalizations that year). That’s a lot of dollars for covered parking.
2. Medication errors-I can’t begin to tell you how many times in a hospital visit there are errors. They can range from giving the wrong medicine, the wrong strength, the wrong dose, a generic version of a brand name that doesn’t work or late meds.
1. Health History-I think I have given this at least a thousand times in his fourteen years. I would love it if they could keep an electronic version that I could simply read and update as needed upon each admission.

Honoring a Memory

It was late last summer when I had “the conversation” with my son’s pediatric neurologist about his latest hospitalization. It was then that I learned that we were heading down a one way street, so to speak, and never coming back.

It is never the conversation you want to have with someone, let alone when it’s about someone you love. But the good news was that I had the gift of time. The time to savor every last moment and every last smile.

It gave me time to think though, about what I would do when he was gone. I mean, I stopped working full time years ago when the hospitalizations just kind of took over my life. My time now is spent mainly caring for him and working a few hours each week to keep my sanity and to provide some much needed income.

I decided to look at what I would do when I return to work full time and what I would do to honor his memory. I looked back over the years and felt that one of the things that I valued a lot was respite care. Currently, they provide $1200 a year for respite so the first thing I decided was that I would sponsor one family a year, for the rest of my life.

Somehow, I needed to do much more. I was trying to pick a percentage of my income that I would donate to different organizations, but nothing really seemed to fit. It was then that I first started to think about being a foster mother. I thought what better way to give of myself than to give of myself to someone less fortunate. But what kind of child would I like? I really don’t know anything about raising a normal child, since the only experience I really have is special needs. It was then that I decided that a seizure baby would be my first choice. I mean, I have a lot of experience with seizures; I know how to identify them, the different types, I know what to do, I have experience with all different kinds of seizures, I know how to use a feeding tube, how to administer Diastat, etc., etc. I also know how to celebrate these children and more importantly how to love them and make them feel loved. I can also make some of the coolest Halloween costumes that fit right over a wheelchair.

So today it seemed quite ironic that I would meet an actual foster mother. I first noticed this woman’s son- a strikingly handsome young man of ten or eleven years old. It was ironic in many ways because he was wearing the exact same clothes that I bought for my son, a year ago. I met this woman at the very store I bought the clothes in. In my conversation with her, I learned that he was autistic and that she was a foster mother. Her sister takes in babies with fetal alcohol syndrome. I thought to myself what a great gift these women have given to these children.

So when the time comes, I will take some time to mourn, to get back on my feet financially and do a little travel. Then I will start the process all over again. What a better way to give back than to do what I do best, be a mother. And when I do, I will say a little prayer to my only son thanking him for showing me the way and honoring his life by giving back to another child who has even less. One of my friends sent me a quote from a book she was reading this summer and said she thought of me. It said, “To the world you may be one person, but to one person, you may be the world.” Amen.

Life Without A T.V. Remote

For the last fourteen years, I have racked my brain for gifts for my son. My son is fourteen now and severely delayed, does not walk or talk and has no use of his hands or arms (seizures, dystonia and severe mental retardation). He has been this way since birth. I had him tested at a major rehabilitation institute in the midwest when he was three years old and if I recall, the “official” diagnosis is an apraxia of the hands.

Birthdays and Christmas have always proved challenging. Imagine going into any Toy R Us store and looking for a toy that does not involve your hands, arms or voice and does not require you to sit, stand or balance and you begin to see my dilemma. Oh, and let’s throw in the fact that he can’t roll either. Now then, take all the time you want and let me know what you find.

This has gone on for many years and I have become quite creative in my gifts. I have learned to focus on the things that he can do and the things that he enjoys and that drives my selection. Most important, is focusing on things that make him happy.

Last October, he was hospitalized again in a last ditch attempt at some intense PT/OT and ST rehab. In the room we had, was a small television that was located at his bedside. He seemed to delight in the fact that this t.v. was smaller than most and was “his”. After seeing how much he enjoyed this t.v., I decided he should get one for Christmas.

I have never liked having a television in the bedrooms. I think they are places of rest and do not condone it. However, my son is now bedridden so I decided to make an exception.

Santa brought the television for Christmas and he absolutely loves it. Now then, here comes the issue. He can’t operate the remote. Not only can’t he operate it, he can’t even hold it. I don’t know why this bothers me so much but I can not imagine lying in bed watching t.v. and not being able to change the channel. Not being able to EVER change it. Suddenly, the fact that his hands don’t work, REALLY bothers me.

I take channel surfing for granted. I frequently flip through them at a moment’s notice. I never think about it. Once, I lost the remote and I didn’t know where the physical buttons were on the television to turn it off.

Of all the blessings that I have, I have never considered the fact that I can use a remote control as a blessing. Who knew?

Super Size She

Photo of me at age 25 in 1983

Photo Credit: Larry Agron, Women's Physique World Magazine

I was channel surfing last night when I happened to catch the last ten minutes or so of Super Size She. Super Size She chronicles a female bodybuilder, Joanna Thomas’s life. I was shocked to see a woman, who at first glance, I thought was a man or a transvestite. It was sad to see just how far women’s bodybuilding has gone.

I fell in love with bodybuilding in the late seventies. At that time, I was in college and worked at my first gym and later progressed to working at several other clubs. Somewhere along the line, I became interested in men’s bodybuilding. Back then, they didn’t have female bodybuilders and for the record, Muscle and Fitness had not been started.

Shortly thereafter, women’s bodybuilding came on to the scene. I started working out with heavier weights. Bodybuilding came naturally to me. At almost 5 feet 8 inches tall with an athletic build, I was built for the sport. I can’t even begin to tell you how excited I was about bodybuilding. For the first time, I felt like my body fit into a “sport”. Not only did it fit bodybuilding, but I was a natural. I loved the concept of being strong and even better how my body looked with weight training. I felt like I “belonged”. I built up my back and my waist looked even smaller. At 25 inches, it was small. I was a runner too and the weight training just gave my thighs a nice sweep and I felt very sexy. I met my husband while working in the gym and I began to train with him at some hard core gyms. It was there that I heard about the steroids.

In time, we would go to contests or men would prepare for contests at the gyms and use steroids. I never liked drugs of any kind, let alone these. I would see the men get big from the steroids, the acne on their skin, the puffiness and the “roid" rages. When they went off the drugs, they always went back to their natural size, whatever that was.

Even more disturbing were the women. They would take these drugs and develop these big drug bellies and get these bulky muscles. Without any natural symmetry, they didn’t look very feminine.

Around this time, female bodybuilding had taken off. I would read the magazines and aspire to be a professional bodybuilder. I remember reading about one woman in particular who could bench press 135 pounds for 8 reps. I decided I wanted to do that. Heck, my first time in a gym, I bench pressed 125 pounds with free weights.

Once the steroids use became rampant on the bodybuilding scene, my love for the sport died. I no longer aspired to be like them. I loved the sport for how it made me feel, strong and powerful. But health is also terribly important to me and I would never take any drugs, let alone anything for bodybuilding.

Fast forward years later. The women that I admired in the magazine had died. Of steroid use. Not only did she die, but many of the women who were featured in the various publications died over the years, most likely of steroid abuse. It was always some oddball thing they died from, but almost all were linked to the side effects of steroids.

So as I looked at the woman last night, I felt disappointed. A sport that was once a thing of beauty had become a freak show to which no woman would aspire. 

In Search of a Smile

I was pretty excited today to take my son to the movies. My son is severely disabled and is not able to do much anymore. He is pretty much bedridden and it's hard to find things to do, let alone things that make him laugh. Over the past year, he has lost his ability to walk on his knees, sit up and hold his head up. But he has a great smile and a great sense of humor.

Last summer, I took him to the movies. During the previews, we saw one for Curious George. My son really laughed during the preview so I made a mental note that we needed to see that movie.

We went to the show today. He was excited to get out. We have a great theatre that has a lot of spaces for wheelchairs. As we sat there, I realized that he was going to have a hard time watching the movie because he can't hold his head up at all. To top it off, he has a vertical gaze palsy which makes looking up more difficult. At this point, I wondered why I had bothered.

I really just wanted to see him smile. Sounds hokey and maybe silly but the smiles are getting few and far between. My son now has a degenerative condition related to a rare gene he has. He is one of a handful of people in the world with this gene. His days are numbered and I want to remember all the smiles I can. And his is really special.

But Curious George didn't deliver today. I held his head up for almost 80 of the 87 minutes of the movie. And I still didn't get any smiles.

So it's back to the old stand bys tomorrow. We'll play the Silly Six Pins Bowling Game after breakfast where he will knock down the bowling pins with his head and smile with delight at the music it makes when he gets a strike.

So much for the movies.