The Swing

Dear Son was quite young when we moved into our new house. He was three at the time and our backyard looked out over the pond. The back yard was empty, devoid of landscaping, devoid of anything, other than the new sod that had just been layed. But the view was spectacular. The aerators were located in the middle and far ends of the pond and our house was directly even with the center of the pond, so we could see the water rising up high into the air and even better, hear it settle back down into the pond. It was beautiful and tranquil at the same time. You could see the pond from nearly every room in the house, which I loved. The bay windows in the kitchen allowed for a panoramic view when you sat at the kitchen table, regardless of where you were sitting.

Over the next year or so, I purchased a rather large sugar maple, that had to be planted, because it was so big we could not do it ourselves. The sugar maple sat half way between the back of the house and the pond, so it would grow and provide some much needed shade to protect us from the hot west sun. The tree would come to be one of my favorite trees, especially in the fall, when the sun would rise in the east and shine down on the bright orange colored leaves.

At the back of the yard, was the new swing set. It consisted of very large chunks of cedar bolted together. We decided to make it a little wider than most, so that one part could hold a double swing and the other side would be for a special swing that was just for Dear Son. The swing was expensive, as most pieces of orthopedic equipment are, and was $600. It had a high back which he needed for support and a safety strap to hold him him. But it was worth every penny, to see Dear Son laugh and smile as he would swing.

I’d take him out to the swing every day after work. He’d start yelling and laughing, getting louder the closer we got to the swing. Once I positioned him in the swing, he’d quickly proceed to make quick work of his gym shoes, flipping one off followed by the next one in rapid succession, flying high in the air, and watching them fall. Then he’d shuffle his feet as fast as he could, until his socks would fly off of his feet, then his mission was accomplished. A huge grin would settle in over his face, almost as a punctuation mark, emphasizing his glee.

I would push him forever and he would laugh. Sometimes, I would sneak over the Rose of Sharon, located directly south of the swingset, and pull off the large pink blossoms, or dead head them, in between the pushes. When he’d get tired of swinging, I’d take him out and he’d sit next to me on the double swing, me with my arm around him for support, so that he wouldn’t fall. I would sing to him or whisper sweet nothings into his hair kissing his head in between the words.

His birdie, Blackie, a red winged blackbird, sat on the swing set every day. This bird took a liking to Dear Son and would sit on his swing set every day, some times for hours on end. He’d fly over to the triple French door where Dear Son would sit every morning, then fly back and sit on the swing set, once Dear Son left for school. Sometimes, when Dear Son would swing, he would sit on the top of the swing set and sing a song for him. At least that’s what I would tell him.

I remember too the conversation with the physical therapist at about this time. When she heard I let him swing, she quickly scolded me and told me that “swinging would not be good for Dear Son” and then gave me her “medical” reason. I can’t quite remember the words she used, but only the fact that I dismissed her words in a heartbeat and told her so. I told her that Dear Son is happy and smiling when he swings and that anything that makes him happy or makes him laugh, we are going to do “more of” not less of. It was the last time, we went to her.

I sold the house a few years back and moved closer to my job. Our new apartment was located on a golf course and had a clubhouse and double swing that looks over the pond. We quickly made use of the new swing.

We walk six months out of the year, from March through October typically, and all of our walks would start and end with a stint on the swing. Typically, we’d sit there and swing and then after five minutes, Dear Son would start to scoot off the swing, letting me know it was time to go. I’d put him back in the wheelchair and we’d walk a few miles and then finish our walk on the swing. He’s swing for five minutes or so, then try and scoot off, to let me know it was time to go home.

Over the last year, we didn’t walk very often. He didn’t have much physical strength to sit up in the wheelchair and without a tilt wheelchair, I couldn’t tilt him back for more support. He also grew a lot this past year and has gotten quite heavy. Last Saturday, I took him out for our usual walk. As we got closer to the swing, he began to smile and then to vocalize. I pushed the wheelchair over the fresh mulch and attempted to lift him. With his down coat on, I could hardly get my arms around him. The weight of his coat and shoes put it over the edge and I barely managed to lift his 145 pounds into the swing.
With that lift, I sat him on the wooden swing, tucked my arm around him for support and told him that this was the last time. This would be the last time that we could swing because I could no longer lift him into the swing. I told him I loved him and that I was sorry, sorry that we would no longer be able to do the one thing that he loved so much. He looked me in the eye and wouldn’t break the stare. I knew he understood.

We left the swing that day and didn’t look back. The days are getting colder now and there aren’t too many days left that we can walk anymore. I wonder though, how many more things, he’ll have to give up because he can’t do them or because I can’t do it. There’s not much left.

When Dear Son was a young boy, I used to write him a letter from Santa every Christmas. In that letter, I would write about the two or three things that he was able to do that year. Those would be the highlights of the letter. While other mothers were checking off all of the boxes in the baby book, I decided to pitch the book and record his milestones differently. I would write this note on a sheet of construction paper, always in crayon, and always rolled up in his stocking. I would pull out this letter and read it to him every year, while he would sit on my lap. He loved that note. Every note was signed the same way, “All my love, Santa”. I continued this tradition every year, and he always looks forward to it.

So this year, he’s lost his ability to eat by mouth and must be fed through his feeding tube. He is physically weak and now he can no longer swing. What more does he have to give up before it’s just too much? And now that he’s doing less, and giving these things up, what on earth will I write to him? Somehow, saying, “remember when” just won’t cut it in the letter.

Lovely and Amazing-You Made My Day

Most days I still go out to the Site Meter and check to see how many visitors have stopped by my site. Since I’ve quit blogging (although I still write), I have seen the numbers dwindle, however the past few days the numbers have been double. I often check out to see where the referrals are coming from, and most often they are from people doing a google search for information on Hayley Rey and come across the blog I wrote about her some time ago. Most want to know how tall she is, is she anorexic and some want to know about how much money Dr. Rey makes. I don’t know the answer to any of these questions.

Today, I came across a referral and I clicked on the link. It was from a blog called, “Lovely and Amazing”. This blog details a woman’s life with her two children, one of which has Down’s Syndrome. As I clicked on this link, titled “Humble Pie”, I read the most amazing compliment. Here is an excerpt:

“That was my second piece of humble pie today.

Then, as I continued on my cyber cruise, I happened upon true greatness. A woman whose words made my body tingle all over in the way only a superb writer can; a feeling that can only be evoked by a beautiful description of a heartwrenching experience. I strongly encourage you to visit Dream Mom, a blog that is no longer active, but one that is of the highest caliber and written with the eloquence, class, and passion of an old soul. She is whom I want to be when I grow up.

As I glimpsed the moments of her life that she has frozen in time, I sat awestruck at my computer. Awestruck by the beauty inherent in those moments and in her life with Dear Son, and awestruck by the intensity of her life experience.

That, blogland, that was when I threw my fork aside and shoved my entire face in the pie pan. I devoured that humble pie.

Reading Dream Mom's entry Don't Hate Me Because I'm Beautiful also made me realize that maybe my family hasn't been victimized by circumstance; maybe it was only fair that both of my children were born with these two oft described defects. Afterall the yin and yang of life bespeaks of a very delicate balance in nature, one in which you can't have everything..."

Thanks Emily, for making my day. If you get a chance, I urge you to check out her blog called, Lovely and Amazing where she details her life with her daughter Emma Jayne, her Wonder Babe.

Thank You

I would like to thank all of you for all of your support this year. I have decided to stop posting. Caring for Dear Son is a lot of work and this has been an incredibly difficult year. He has grown a lot and is much bigger now, almost 140 pounds. He has lost a lot of skills and can not roll over. The physical demands to care for him, the lifting, the changing, etc. are taking their toll. I give his last medicine at midnight, and am frequently up at 1:30 a.m. to roll him over and then again at 2:45 a.m. and several times after 3:30 or so until I start his first g tube feeding at 4:30 a.m. Any later than that, it won't be completed in time for him to catch the school bus. With these hours, I find I am not able to be very creative, or even want to write much, since my focus is taking care of Dear Son, working part time and trying to get some additional sleep as well as managing all of the medical bills and supplies related to his care. Caring for Dear Son, and children like him, is a twenty four hour a day job.

My goal has always been the same. To keep him at home and care for him as best as possible. I am doing that now, it's just taking a lot more energy.

It has been a real pleasure meeting all of you. I have learned so much from all of your blogs. I will continue to read them as time permits, and look forward to the Grand Rounds every week. It has been a difficult year and your support and prayers for Dear Son during his MRSA pneumonia will never be forgotten.

Thank you so much for your friendship, your support, your concern and your wonderful comments. You are the best.

Hope

I vaguely remember visiting my aunt, on summer vacation. We visited once in a while, since it was on the way home, from our annual summer vacation to Idaho. Idaho, was where my father was building our house. He’d save his money all year, and then take his six week vacation every summer, to work on our house. He had just completed the house, the year before he died, at the age of forty six. I have fond memories of spending many days at the house with him, and especially, getting to ride home to this house, to spend the night, while the other kids stayed with Mom, at our aunt and uncle’s house.

My aunt Alice lived in Iowa and had three children, two boys in particular, both of whom had Muscular Dystrophy. I only remember the one son, who was around eighteen if I recall, when we visited. He was confined to a wheelchair, and we didn’t see him much. I was far too excited about the prospect of sleeping in the tent outside the house, on a beautiful summer evening. This would be exciting, or so I thought. I don’t remember that we got to sleep there overnight, but we spent a fair amount of time out there, until we decided we’d much rather sleep indoors.

It’s odd to think back to him now, when remembering this story. Odd, because when we visited, it was almost as if he was invisible. I don’t recall seeing him sitting outside with us, as all of us visited in the back yard. I don’t recall seeing him visiting with us in the house, as we visited some more. Nor at the breakfast table, or anything else. It’s kind of weird, when I imagine what it must have been like, being disabled, and in a wheelchair, nearly forty years ago. I doubt accessibility was much of an option or that they even had a ramp for him to go outside in the yard.

I do remember what he had though. He had Muscular Dystrophy. I remember distinctly that he died not too long after our visit. His throat muscles wasted away to the point where he could no longer eat. That probably explains why he was never at the breakfast table, lunch or dinner table. I can’t imagine the torture that this must have been, not only for him, but for his mother, seeing her full bodied son, lose his muscles as they wasted away, only to be confined to a wheelchair and eventually die. All of this, before his twenty-first birthday. If life weren’t cruel enough, she would get to watch this entire scenario repeat itself with her second son, who also was born with Muscular Dystrophy. You have to wonder sometimes, how a mother could endure the death of not one, but two of her children, to the same disease.

Most years, I watch the Jerry Lewis Telethon for MDA. I didn’t this year, namely because I forgot. When Dear Son was young, I often wished I knew what he had, because not knowing was far worse, than anything else. ( In 2002, the ARX gene was discovered, and Dear Son was the first one identified with one of the three ARX gene patterns. To date, only four to five other boys have been identified with his gene pattern, the rest of the boys falling into the other two gene patterns.) I often wished that I knew what he had, and that we had a telethon of sorts, so that I too, could have some hope for the future. The hope that he could someday walk. The hope for a miracle. Hope for the future.

I think back to my cousins, who died from Muscular Dystrophy, and wonder what my aunt must think, as she watches the telethon. I wonder if her son’s lives might have been different. I wonder if she cries, when she sees other children on the screen, knowing what they will go through. I wonder what she would say, if they talked to her today, about what life must have been like forty years ago.

I also wonder what it must be like for the mothers today, mothers of children with Muscular Dystrophy, to watch the telethon today. I would guess it must be pretty exciting. Exciting, because you have hope, hope for the future and hope for a miracle. Sometimes, as a mother, that’s all you’ve got.

The Golden Gate Bridge

I was paging though the calendar they sent home from school. It was Thursday, the second day of school, and I had just learned that high school pictures would be taken tomorrow. That means, pictures that would be included in the yearbook. My mind quickly wandered back to my own freshman year and all of the yearbook photos, many of which I would rather forget.

I continued to page through the calendar: ACT Test on September 16th and college information night on September 21st . I wasn’t even through September and already this was getting hard for me. Pep Assembly and Homecoming Parade on October 5th followed by the Homecoming Dance on October 7th. I guess the good news was that I didn’t have to enter any of these dates on our home calendar, since Dear Son wouldn’t need to attend any of these. I might be able to live without the first two, but gosh, I’d love to see Dear Son all dressed up, taking some young woman to a dance. I wondered who he’d pick and what she would be like. I’d help him pick out a corsage for her and take umpteen pictures of course while Dad would be taking videos. October 18th, the Fall Choral Concert was at 7:30 p.m. I remember how nervous I was trying out for the Concert Choir in high school and how proud I was to make it. I loved singing and the Fall Choral Concert brought back good memories. Of all the songs I learned back then, there is one that I still sing to Dear Son. It’s, “Let Me Call You Sweetheart” with the words changed of course, to fit properly for Dear Son. I don’t think he’s ever heard the song, sung the way it was written, only my version sung to that tune.

Then came the big one, the one that got me. It was tucked in between some other events. It was the Driver’s Education Meeting. Dear Son would turn fifteen in November, just the age when he might be getting his permit and learning to drive with his Dad. His mother drives way too fast, so she would not be a good example, although I am proud to say, I don’t exceed the speed limit too often anymore. His Dad would be calm and helpful and teach Dear Son how to be a good driver and make the experience fun. He would be the perfect father for that.

Dear Son’s high school experience will not be like the other kids. Yes, he will be in the same place, but no where near the other kids. It’s kind of like being on opposite sides of the Golden Gate Bridge. Yes, you are on the bridge, but you are so far from the people on the other side, that the experience is not the same, it’s non existent. I remembered just a few weeks prior, after Dear Son’s MRSA pneumonia, when I dragged him to his graduation, that I would be thrilled if we made it to high school. And now that he was here, well, it was disappointing.

That was until Friday, when I walked into Dear Son’s classroom and was greeted by Patrick. Patrick, was the young man who rode the bus with Dear Son last year. The bus would pull up every afternoon and he would yell out, “Hi, Dear Son’s Mom!”. Patrick’s face would light up as I would ask him about his day, hoping to learn something about what Dear Son did, so we could talk about it when we went in the house. I asked Patrick, “How’s school going?” He looked me in the eye, smiled, and quickly corrected me. He said, “no, school, no school”, “high school”, “high school”. And indeed it was. He couldn’t be prouder. And neither could I. Thank you Patrick, for reminding me.

The View from the Window

He sat at the window every day and watched. We couldn’t make out his face, but it was always there. We’d spend the summer playing softball, the neighborhood kids and I, every night after dinner. We’d play in the street most of the time and sometimes, we’d have races; but most of the time, we played ball.

I was thirteen when my father died. He died of a massive heart attack when he arrived home from a new job. My summer was empty until I signed up for Sugar League softball, as in 16 inch softball. Once I began to play, summer was never the same. I was an All Star from the start, hitting farther than nearly every girl, running faster than all of them and a pretty good first baseman at that. Any time I was near a baseball field, the feeling was the same, I’d always want to play. From time to time, there would be other games on the field, and they’d need another player. I’d always hang around watching, hoping they’d ask me to play. While I was waiting, I’d always have that burning desire to play, the adrenalin building up inside me, like water behind a dam, waiting to explode. And soon, they’d ask me if I wanted to play. I always said yes. I didn’t care who I played for, I just wanted to play and wanted to win. I never denied myself an opportunity to slide into base, sometimes it was necessary and sometimes it was not. It was always dramatic. I don’t think I ever went home with a clean uniform. After all, it was summer and it was softball season.

I think of these summers and think of Dear Son. He too, sits in front of the picture window at his father’s house. Sits in the rocker and watches the neighborhood kids play, and sometimes, even playing in the street. He watches them on their bikes, getting ice cream, getting in and out of the car from a movie or simply going to a baseball game with their uniform on and bat in their hand. He used to be able to sit and watch them on his knees while leaning against the front room wall, the window pushed up to clear his head, so his nose could press up firmly against the screen, as if he were trying to suck in every bit of a summer breeze. Today, he sits in the rocker, his head leaning against the window for support, so he doesn’t tip over. He sits there until he can’t support himself any longer, and his Dad lifts him up and carries him over to the sofa.

Sometimes, he sits outside in his rocker but the view is still the same, just a different spot. He’s closer to the action, if you want to call it that, but never close to being in the game. I often wonder what Dear Son is thinking as he watches these boys. I wonder if he imagines himself hitting home runs, as I often did, or wonder if he wishes he could be part of them, just once, and go along, even if just for the ride. I wonder how that experience would change him, if it would make him feel more like one of them, or just make him feel more like a man.

I remember flipping through the channels and catching bits and pieces of a show on TLC recently, about a rare form of dwarfism, where the children grow up extremely tiny and age really fast. Their bodies never reach four feet tall, full grown, and their faces are disfigured and aged far beyond their years. Their teeth were odd too and they looked more like misfits than human beings. In one episode, one of the kids, got his wish to play the drums in this band that he liked. He was so excited. He played with them and said he dreamed of being a rock star. This was about the furthest dream for him since he would never be rock star material, even if he could play really well. What struck me, was how this one event would forever change his life. For once, he got to be the star and do what he wanted, play the drums and pretend he “was” a rock star. It was a memory he would cherish the rest of his life. But what I remember most, was the look on his face. It was the most exciting thing that had ever happened to him in his entire life.

I thought back to Dear Son, sitting in the window. I wondered what one thing he would want, more than anything. I wished he could tell me and I wished I could make it come true. I think of how sad it is sometimes, to live life on the outside, always looking in, always wondering what it would be like, to be “in the game”. I wish just once, he could tell me.

The Surreal Life

*This post was inspired by Neonatal Doc’s post where he wondered what parents in this situation wanted to hear. I thought it might be interesting to talk about what was going through my mind those first few years after having Dear Son, who is severly retarded.

We had been preparing for Dear Son’s birth. We had taken the Lamaze classes which were weird in and of themselves. The room was ready and I was definitely ready to deliver this baby. We had wallpapered the room, my sister in law and I, in a white background with tiny green hearts; so tiny in fact, they looked like dots. The carpet had just been installed and the room was basically a frilly, girly white with a few brown bears tucked in for good measure, to make it look more “boyish”. I had passed all of my pregnancy tests with flying colors and other than having morning sickness for the whole nine months, it was really pretty uneventful.

I had contacted our insurance agent a week or two prior to Dear Son’s birth to make sure his life insurance policy would be started the day he was born. A simple phone call, the day he was born, would be all it would take. Everything was in perfect order.

The baby was gaining weight and the obstetrician wanted to do a c-section due to the baby’s large size. He was estimated at almost ten pounds, so he was in a hurry to get this done. Three days before Dear Son’s due date, they did a c-section. I was so disappointed. I had wanted a “natural” birth so bad. Dear Son was born weighing in at 8 pounds, 12 ounces and 21 inches tall. He developed breathing issues soon thereafter and seizures were noticed the first day. Shortly thereafter, he was transferred from Suburban Hospital to Big City Hospital were he remained for one week. It didn’t take long for problems to surface and at ten weeks old, we made our first visit to Big Academic Medical Center.

I had called our insurance agent and he said he would add Dear Son on as soon as we got home. Time flew by and Dear Son continued to have issues. By the time I arrived at our insurance agent’s office, Dear Son was deemed “uninsurable” since the data of his hospitalizations had already made it’s way into the Medical Information Bureau.

I remember distinctly the first few years of Dear Son’s life. Dear Son has issues from the day he was born. I don’t ever remember the conversation, if there was any, that things were going to be different. I do remember the conversations that I wanted to hear. I wanted to hear a diagnosis, I wanted to know what caused these issues, I wanted to know if I had any other children, if they would be like this, and more importantly, I needed to know what to do, how to care for a child like this. Up until a few years ago, we never had a diagnosis. We did have genetic counseling and I decided that I didn’t want to take the risk of having any other children that had “issues”.

I remember distinctly, going to the Easter Seals with Dear Son and looking carefully at the other parents of disabled children, or rather, at their other children, to see if they were disabled. More often than not, some of the other children didn’t suffer from the same affliction, but had other issues. I decided at that time, I wouldn’t take the chance of having any more children on the chance they would have some disabilities so I had my tubes tied. My reasons were very selfish at that time. I mean, having one disabled child was one thing, but having more than one, was well, overwhelming. What would people think? I thought perhaps our genes didn’t go well together and we should just quit where we were. I thought if we were this unlucky to have one disabled child, then what would make me think that we could beat the odds and have a “normal” child? I am not proud I thought like this, but that was exactly what was going through my head.

For the first few years, I would take Dear Son to his physical, occupational and speech therapy and wonder, “why me?” I felt woefully inadequate. Yes, I took good care of Dear Son and I loved and adored Dear Son, but I just figured if the Lord was picking some parents for Dear Son why wouldn’t he pick a physical therapist as his mother, or a special education teacher? Why would he pick me? I was a business person. I had no interest in Special Needs children. None. Period. It seemed like an odd match.

Those first few years were tough at times. There was never a firm diagnosis in the beginning, only a bundle of hospitalizations and doctor visits, like a never ending episode of ER. I think the thing I wanted most, was honesty and a straight answer instead of sugar coating things.

Every parent dreams of what their children will be like. Normally, as time goes on, you learn that your child doesn't always grow up to be the child that you "wanted" them to be. After all, if we could select the traits our children would have, there would be a lot of things we would wish for them. When you have a Special Needs child, you learn the things that they are "not" going to be on the first day of their life. That's a big adjustment. It's also difficult living in a world of people who "live" through their children. You forever live on the outside of such conversations that people have when they say, "I don't know how we are going to afford Harvard" or when your peers are talking about how they are going to afford certain things for their children. Over time, you learn that as parents, we all have unique challenges, and if you look real hard, you can find the things that you share in common versus the things that make your child different from the others.

In time, these things became less and less of an issue. I began to love and enjoy my son for who he was, not who I wanted him to be. I began to look at the world and his world differently. It challenged many of my beliefs. It was also a total mind shift away from who I was, always driving forward and trying to achieve as much as possible. There were no bragging rights here. My child was never going to be first in anything, ever. You can’t begin to imagine how difficult this would be. If you want to try to imagine what this would be like, then do this exercise, the next time you are at a party and parents start talking about their children. When they begin to speak, keep a mental note on how many parents brag about something their child did. Take special note on how other people respond with another story about their own child that tops that one. When you do this, you will begin to understand what it might be like. When you have a Special Needs child, there is nothing to brag about. Nothing. Ever.

But that’s only how it is when you are living in your world. Once you begin to see them for who they are, your life begins again. You start to look at things with a different perspective. You begin to see all of the wonderful things that they are and that they will be. You begin to see how they enrich you, and then your family, and then the community. Kind of like throwing a rock into the pond and seeing the waves flow out around it. You begin to see the beauty that radiates from within them. You learn to see the little things that they think are important and that you take for granted. You learn to see the beauty in the simple things. You learn patience. You learn gratitude. You are humbled. But most of all, you learn to be thankful. Thankful, for all that they are and all that you have become. That’s the difference. And nobody tells you that. You have to learn that, for yourself.

Break

My apologies for being gone these last few weeks. Things have taken longer than I expected. I have been extremely busy this month trying to get all of Dear Son's medical bills processed. I have several that are requiring many phone calls and additional paperwork in order to get them processed. I have a few more vendors that will require a fair amount of time to get them processed correctly. I had hoped to have all outstanding claims processed by month end. I am also in the process of completing the necessary paperwork to purchase many of the medical items that we have been leasing these past few months.

In addition, I have been very busy getting all of the required paperwork completed for Dear Son to attend high school, which starts on Wednesday. Since he is on a feeding tube and requires medication to be given at school, there are a host of things that need to be completed in order for those things to occur. All of this is in addition to working and taking care of Dear Son.

In the meantime, I haven't had time to locate another Respite sitter for Dear Son so I haven't had any time to myself to do such things as blogging, or the fun stuff. Once Dear Son starts school this week, I should be able to spend a little more time getting all of my paperwork completed so I can get back to blogging full time soon. In the meantime, I'll try to post every few days.

Dear Son has been doing o.k. lately. He's had more seizures but has not had any reoccurances of the MRSA pneumonia. We recently increased one of his medications to help with the seizures.

If you get a chance.....

check out this blog. This is the funniest blog I have read in a while. I clicked on it today and it had me laughing. Ruth is a quadriplegic and her blog name is, "That Blogging Wheelchair".

Here are some excerpts that got me laughing:

1) I'm Blogging This Here's what she said:

"I really should wear a T shirt that warns people that anything they say or do could wind up on one of my blogs. As far as I'm concerned, it's all material.

I also think this is a good thing to say to someone after they've done something stupid. Give them a look in the eye and say "I'm blogging this." Then leave.

"What?" they say, as they chase after you.

"Never mind."...." You'll have to read the rest of it yourself.

2)I Feel Sorry For People Who Walk Post where she describes the different type of walkers at a Starbucks.

3) The Accessible Lamp post where she talks about a new lamp she ordered.

I'll let you read the rest yourself.

Pure Joy

I can remember the look on his face in the hot tub. It was pure joy. His eyes were sparkling, he was grinning ear to ear and he was totally relaxed. I can’t remember a time where I had seen him that happy. It was many years ago, when Dear Son was small, and we were staying at a hotel. It was the first time in a hot tub. We (my husband and I) had made the mistake of taking him into the hot tub first and instead should have taken him into the swimming pool. A mistake, because once Dear Son felt the warmth of that hot tub, there was no way he was going into the pool, which was a lot cooler by comparison.

I have been fortunate to see Dear Son quite happy over the years. Playing in the dirt hole at daycare, seeing him laughing like crazy at school with his friends in the classroom, and then remembering that face from the hot tub, the one that is pure joy, where Dear Son is beaming like a 100 carat diamond ring. I don’t think you ever forget your children’s faces, when they experience pure joy. The only thing you ever do, is to try to repeat those experiences as often as possible so you can see that beautiful face over and over again.

August is always a difficult month for me. It’s difficult because I rarely get a break from Dear Son. During the school year, I have a few minutes to myself to exercise once he gets on the school bus. After school ends in early June, summer school starts up and even though it’s only a half day, I still get to squeeze in a little time to myself. Summer school ends around the third week in July and then it gets a lot harder since I don’t get a break until he starts school at the end of August. His Dad has been coming over two days a week while I work, but that doesn’t really give me any time to myself. But there is something really good that happens. When I come home from work, Dear Son is thrilled to see me. Not happy to see me, not excited to see me, but absolutely, positively thrilled to see me. It’s that same look of pure joy I saw on his face in the hot tub. Make no mistake, his father is good to him and he enjoys spending time with him, but I am rarely away from Dear Son and he clearly misses me. It is by far the best part of my day, thinking about his face while I am driving home.

I am very lucky. I remind myself of how lucky I am to spend so much time with him. It isn’t very often that I get to sleep through the night without getting up to attend to him, roll him over or change a diaper. None of these are things you should be doing when your son is almost fifteen years old. Last night alone, I went to bed at 12:30 a.m., was up the first time at 2:30 a.m., then again at 3:30 to 4 and then he was up for the day by 4:45 a.m. I can usually manage pretty well except for the days when I am only asleep for an hour before he wakes up for the first time. Sometimes, okay maybe more, I actually pray that he won’t wake up so I can get some sleep.

Over the weekend, I happened to catch Troy Aikman’s Hall of Fame acceptance speech. The camera panned over to his wife and three daughters. I wondered how a super jock like that felt, not having a son to play sports with, and instead, having three daughters. I imagined the dreams he once had, of having a son. Towards the end of the speech, he talked about the tough times, when say, perhaps he had thrown an interception. He spoke about something Norv Turner, one of his coaches, used to say to him, at times like this, when times were tough. Norv would say, “Sometimes we have to remind ourselves that these are the jobs we've always dreamed of having.”

I have always wanted to be a mother. Specifically, I wanted to be married and have three sons, since my husband and I loved sports, especially football. I never imagined though, having a child like this, with so many disabilities. We want everything to be perfect, we want our first born to be normal and people make decisions based on the fact that their children aren’t perfect, but I have to wonder sometimes, if I would see this type of joy when I came home from work, if he were normal. You have to admit, I am one lucky woman.

Green Envy

Dear Son was three years old when he got his first wheelchair. It was 5:45 p.m. and I had gone to the wheelchair vendor to pick it up and bring it home. It was late, close to closing time and the vendor gave me a crash course in how to put it together and take it apart. The wheelchair, was a dark green metallic and black seating. Basically, there was a lot of black and not much color. I chose the color because I definitely didn’t want black, too morbid for children, I thought.

I took it out to the car. You had to break it down (take it apart) to get it into the trunk and I was having trouble already. It all seemed a little bit foreign to me and the last thing I really wanted to learn was how to assemble a wheelchair. Never in my wildest dreams, had I imagined a wheelchair. Frustrated, I set the wheelchair upright in the trunk and tied the trunk down. I was not off to a good start.

The rain began soon after. Not only was the wheelchair getting wet, but the trunk was as well. The wheelchair seat was a black fabric, that would have to be washed and then dried, before he could use it. Tears began to stream down my face; I was so frustrated trying to put this thing together. How was it ever going to work?

We arrived home. The wheelchair, sat in my kitchen like a big black hole. It was the ugliest thing you could imagine, a big dark depressing hole right in the center of my kitchen. Why couldn’t they make these things more beautiful or even cheery for the kids?

The next few days didn’t seem much better. I tried sitting Dear Son in the wheelchair, properly as I should, with his feet strapped in for support, along with the strap over his hips and the one across his chest. All of the straps seemed so confining to me, like you were strapping him in an electric chair. Worse yet, was the fact that he couldn’t do anything in the chair but sit. I decided very quickly that this was not the life I imagined for Dear Son. I don’t know what is normal, I don’t know how people use these chairs, but to have a three year old sit in a wheelchair like a vegetable, was not my idea of a good time. I wanted things to be less restrictive, not more confining and I removed him from the chair.

The chair was used only for school, feeding, transportation and our daily walks on the Riverwalk. I rarely if ever used the chair in the house. Instead, Dear Son would play in his ball pit, where he would sometime fall asleep. We had a triple French door that looked out into our back yard and out to the pond. I would open the center door and Dear Son would lie there with his head on his Barney and look out at the pond, listening to the sound of the water drop from the aerator. Soon he would fall asleep. Anything was better than the wheelchair, at least he was living and enjoying life.

I had a special rule though, that I would never take pictures of Dear Son in his wheelchair. Whenever I would view a picture of a person in a wheelchair, I always saw the disability and never the child. This is not to say I don’t have any pictures of him in his wheelchair, but I “rarely” took them of him in his chair. I had to get pretty creative over the years, always trying to find something with some back support so he wouldn’t fall over, but it was definitely doable.

The wheelchair lasted for many years and soon Dear Son outgrew it. This time, I chose a candy apple red metallic for Dear Son’s chair. By this time, they had made some advancements in the chair, and you could get them to fold together so you could put it in the trunk of your car. The cost of this chair was $9,500, all of the customizations that were required to support him definitely added to the cost. I bought him a red down jacket for the winter to match his chair and the color seemed to capture Dear Son’s essence.

Earlier this year, we had to order a new wheelchair. Dear Son had deteriorated significantly and his current chair no longer supported him. He required a new “tilt” wheelchair, that I wrote about here. The tilt feature would make it easier for Dear Son to sit up, since you could tilt him back and allow better support to keep his airways open. After many months, both insurance companies approved the new chair. It was almost a done deal, until last week.

The new chair would require a fitting. In addition to the fitting, I had to select a new color for the wheelchair. I checked the brochure and went on-line to the website to see the new colors. I was trying to select a color that I thought would be appropriate for “high school”. I decided on a sapphire blue metallic. This color reminded me of the color of a Jaguar XJ8 that I liked many years ago. It would also complement Dear Son’s leg braces with the NFL logo on them in our home team’s colors of navy and orange. It was all a done deal.

At the fitting, I asked for the sample metal chips so I could see the color in person. The color was nothing like the brochure or the web site. Actually, it was the ugliest color I had ever seen. It was a dark blue with some silver glitter tossed on it. It looked way too girly for Dear Son. I went through all of the paint chips and none of them appealed to me. All very old and odd colors. It was like selecting a paint color for your new car using 1970 paint chips. In the end, I picked a color called, “Apple Green Metallic”. It is nothing close to an apple green but rather a sage green. It was the best I could do providing I didn’t want black. I really don’t feel too good about the color selection but there weren’t any great colors. If I were working full time, I would have the chair re-painted in that sapphire blue metallic by a custom car shop. But since I work part time, I’ll have to live with it.

Wheelchairs are boring which got me thinking about what they could do to make them more interesting, if cost weren’t an option of course. I think I would like to see more chrome on the wheels, to make it more like a car. It would be cool if the wheels maybe lit up with words on them, like the wheels featured on the HGTV show, “I Want That”. You can program messages into the wheels and then when Dear Son comes up, his wheels on his chair would flash, “hi” in lights and he could talk to people.

Or how about a line of NFL or NBA wheelchairs? These wheelchair would come in the colors of the NFL or NBA teams with perhaps an autographed signature across the headrest of a current favorite player or Hall of Fame player. How cool would that be? Maybe it could come with an autographed picture of the player too. Kind of like a whole package. Wouldn’t that be something for the boys at school to talk about. Gee, Dear Son, you have an autographed headrest by Michael Jordan! Or what about a Michael Jordan wheelchair that comes with a pair of Air Jordans? Certainly some disabled kids may not know who these players are, but they do recognize and love the attention from their peers. At the very least, I’d love to see NFL logos that could be printed on the chairs or even the headrest to customize the chairs.

I would also love to see a wheelchair that could convert to a bed/cot. This way, is the child needed to be changed in a washroom, you could just fold the chair back into a bench position and change them without lifting them out of the chair.

A wheelchair that could convert to a stander by remote control would be great too. Then Dear Son could stand and look people in the eye when he meets them. There is a big difference looking someone in the eye than having someone look down at you. I read recently that there is a saying that when you should, "Look straight into a person's eyes when you talk to them, especially if they are disabled. That way they know you are actually communicating with them, not pitying them." A wheelchair that allows them to stand would make a big difference since they could look them straight in the eye.

I would love to see custom backpacks designed to fit on the wheelchairs that were customized to match the paint on the wheelchairs.

I would like to see accessories that could be purchased to go with your chair-perhaps customized lunch boxes, back packs, diaper packs, etc. that would attach to the chair. Or even, some fabric options to match your own home. The vendor gives you the fabric measurements and you bring in the fabric for your chair. The vendor’s seamstress then cuts and makes the fabric for your chair.

The bottom line is that I’d like them to be more personal, so that they would give kids something to talk to these kids about their chairs. It would also help other people see the kid’s personality and not their disability.

The Ant Bully

Dear Son was in the middle of his g tube feeding and was getting bored. His feeding, typically takes two hours in the morning and almost three hours at lunch and dinner. He takes his feeding most of the time lying on his bed and in the afternoon, in his tent, which he loves. He was an hour into the feeding and began kicking the wall letting me know he was bored. At almost fifteen, and unable to sit, our options for passing the time are few. I decided to get him out of the house and proposed we go to the movies. Delighted, he stopped kicking the wall and I chose a movie, the Ant Bully. With nearly 100 degree heat, the movies would be an excellent choice to pass the time. The hard part, would be all of the lifts, lifting him into the wheelchair, then into the car, then into the wheelchair to get into the theater and then repeating that whole process again to come home. At nearly 140 pounds, it takes a lot of my energy. In addition, I make sure he has all his meds, has finished his feeding, change his diaper and packed some diapers in case he needed to be changed. Dear Son was so excited.

We get to the movie theatre and it’s wonderful. This theatre is great for wheelchairs. The first row on the main floor, in the center of the theatre, has a few seats and then some of the seats have been removed which leaves lots of space for a wheelchair. You can actually sit next to someone in a wheelchair as opposed to having them sit in a different row, which is frequently the case.

The Ant Bully begins. It’s a wonderful movie that centers around ten year old Lucas Nickle, who had recently moved to a new city with his family and he’s definitely not having any fun-he doesn’t have any friends, his big sister ignores him and his parents are occupied with their upcoming vacation in Mexico. Lucas, a nerd, quickly becomes the victim of the neighborhood bully Steve. Steve, constantly picks on Lucas, pulling him up by his underwear until the elastic breaks and he falls to the ground. Lucas, also known as Peanut, is frequently terrorized by Steve and soon begins his displacement of aggression by taking out his frustrations on the ant holes in his yard. He proceeds to stomp on them and squirting them with the garden hose.

Little does Lucas know but there is a whole world alive beneath the ground in his yard, and the ants view Lucas as a threat to their safety and begin fighting back. In the ant world, he is known as Lucas the Destroyer and Zoc, the Ant Wizard (voice of Nicholas Cage), creates a formula that shrinks Lucas to the size on an insect. Lucas awakens to find himself a prisoner of the ants. The tiny boy is then brought before the leader of the Ant Colony to answer for his crimes against the ant. Showing compassion, the Queen of the Colony (voice of Meryl Streep) sentences Lucas not to death, but to live among them and see how difficult their circumstances can be. Nurse Ant Hova (voice of Julia Roberts), is put in charge of looking after Lucas. Lucas fights this process and continues to do things his way, totally ignoring the “teamwork” of the ants. At one point, he is running away and can’t climb the wall. The ants tell him he can do it and when he can’t, they yell out “chain” and the ants form a chain and rescue Lucas once again. Working together, they are able to do things that any one ant can’t do on their own.

Throughout the movie, Lucas gets an eye opening perspective of how the other half lives and just in time to help the ants in an all out battle against the pest control man brought in to get rid of the bugs. Throughout the movie, Lucas then begins to see the world from the ant perspective. In one scene, we get to see an underground explosion in the ant world, which is huge, and then see the same explosion in the lawn above ground, from the human perspective, where it is nothing more than a little blip. When you are living in the ant world, the explosion is huge, almost overwhelming and yet when you aren’t in the ant world, you just can’t comprehend the magnitude of the explosion.

About a half hour into the movie, Dear Son begins to fuss. At first, I think it may be seizures, because his hands are shaking and I am unable to calm him down. I use the magnet on the vagus nerve stimulator and things seem to get better. A short while later, he begins to fuss a lot and I have difficultly in calming him down. Soon he settles back down and we continue to watch the movie. About an hour into the movie, I am holding his hand and realize that his shorts are wet and he needs to be changed. I suddenly realize that while I brought his diapers, I would be unable to change him. The restroom, while it does have a handicapped stall, does not have a bench or anyplace to change Dear Son. While I could lie pads down on the washroom floor and change him there, I have the problem of not being able to dead lift his 140 pound body off the floor and back into the wheelchair. Therefore, I can not change him here and we must now leave the movie and go home. There isn’t another alternative. He won’t sit still with a wet diaper and I can’t expect him to sit another thirty minutes without being changed. We leave the movie. I am frustrated. What was supposed to be a fun time out had to be cut short because there weren’t adequate facilities to change him.

Life isn’t fair sometimes. I wonder how many times this same scenario repeats itself around the country. I wonder how many disabled kids don’t get to go to the movies because there aren’t facilities to change them. I wonder how many mothers take their other kids and leave the disabled child at home because there aren’t places to change them. I wonder why in the year of 2006, that we don’t have restrooms for everyone to use.

If we put ourselves in Dear Son’s shoes, we couldn’t go very many places if we had to go out and never be allowed to use a restroom for the entire length of time we are out. Can you imagine going out for the evening to dinner and a movie and not being allowed to go to the washroom or not having facilities available to use? Can you imagine what it would be like to have to go home anytime you are out somewhere, because you have to go to the washroom? And why, why do we insist on making lives more difficult for special needs children and adults? We need to make their lives easier.

I have to wonder if this is really the absolute best we can do as a society for these children? Being disabled should not be a handicap to having some fun and having a life. We need to begin to make things easier for these children and those who take care of them. We need people to understand that we anyone can be disabled in a heartbeat. One small car accident and you can be disabled for life. We need people to understand that making things easier or putting in facilities that disabled people can use aren’t just for the disabled. These are things that “everyone” uses which is why it’s called “universal” design.

We need a family restroom at public places. As a mother, I need a washroom I can take Dear Son into to change him. I don’t feel comfortable taking him into a woman’s washroom, lying him on the floor in full view of all the teenage girls, young girls, and adult women, and changing him. I don’t feel that allows him any dignity, even if I can lift him.

I also don’t feel comfortable going into a men’s washroom and changing him on the men’s washroom floor. It would be humiliating for me and I can only imagine what Dear Son must feel like to go into a woman’s washroom.

If I had a family washroom large enough to get in a wheelchair and with a bench of some kind to lie him on, I could change him. I know that this washroom would be used by fathers who take their daughters in to be changed, mothers of kids in diapers, disabled children and the like.

Like the Ant Bully, it’s all about perspective. You never know what it’s like until you are shrunk down and forced to live in the world of the disabled.

Chain.

Back to Blogging

After a much needed break, I am happy to come back to blogging. I'll have a new post on Wednesday.

Things hit a crisis earlier this month when Dear Son's claims began coming in fast and furious after his May and June hospitalizations. I had over 100 claims to process not to mention the fact that my file cabinet was overflowing and needed to be sorted out. Cases and cases of Dear Son's formula and other supplies began to fill up my foyer and suddenly things were overwhelming. It look more like a hospital supply room and less like a home which is not good. Dear Son's Dad put some shelves in the hall closet for me and I was able to move all of the feeding supplies to the new shelving. I was able to get through all of the claims with the majority of the claims processed with the exception of a few that will require some follow up calls. In my procrastination over cleaning out the file cabinet, I took on some other tasks and re-organized the garage, detailed my car, shined up the kitchen cabinets and countertops along with doing a few projects in there. I read a few organizing books while I was doing my projects so that helped inspire me. It doesn't seem to matter how much I do there is always something I could be doing. I am not very good at sitting still. I am happy that our house looks like a home again and I have a clean desk without any paperwork!

I also had to hire (and later fire) a Respite worker. I'll probably write a blog about that but I nearly had a heart attack over that one.

Dear Son seems to have stabalized (fingers crossed) and is doing much better than he had been earlier this month. It seemed to be touch and go for a while. It has been quite an adjustment for me not having to cook for him anymore since he has switched to g tube feeding.

It has been ungodly hot here this month. I'll be glad when the weather finally cools off and fall arrives.

Thanks for hanging in there and keeping me in your thoughts these last few weeks. I was amazed at how many people checked in every day. That was nice. I am so excited to be back and can't wait to start catching up on your blogs again!

Celebration!

Dear Son and I are celebrating today. We have gone thirty days, count 'em, thirty days with no hospitalizations. This is the first time since his MRSA pneumonia in May (and suspected MRSA pneumonia in June). Woo hoo! Of course, we are going to the Big Academic Medical Center for some lab work today but we are not staying!

I am getting things done and should be able to return to blogging some time next week. Thanks for checking in so often.

Jack in the Box

This is a picture of Dear Son as a Jack in the Box. At this point, I started using the wheelchair as part of the costume. This opened a world of possibilites however it was the last Halloween costume I made since Dear Son was in the hospital after that and then he got too old. One of the last costumes I wanted to do was to have him as an army guy in a Hummer and to build the Hummer over the wheelchair.

I would love to make costumes for kids in the hospital. Some of the costumes I'd like to make are a fireman in a fire truck (complete with a wooden ladder, bell and dalmation) with the fire truck fitting over the wheelchair, an astronaunt in a rocket and for a girl, a princess in a castle where the castle would fit over the wheelchair. I'd love to make these costumes for the kids and then if they are in the hospital on Halloween, the Child Life department could allow the kids to select the costumes and then take a picture of the child for Halloween in the costume of their choice. I am not a real crafty person but I'd like to think I have an awful lots of costumes that I could create.

It is more difficult when you child is disabled and in a wheelchair at Halloween because you can't go trick or treating in the traditional way. When the child doesn't speak, you can't have them say "Trick or Treat" and they often can't hold the bucket nor can they even eat the candy, assuming of course, you would let your child eat it to begin with. I took him a few times to show off his costumes, which is really what it's all about and hooked up his communication device to the foot of his wheelchair. He could then take his foot and hit the communication device to say, "Trick or Treat". It's never really about the act of trick or treating but about having experiences as a parent or a mother that is normal and typical. There are so many times when you'd just like to be normal and do things like other mothers or have your children do things like the other kids. As the mother of a special needs child, everything is always a lot more difficult.

I had so much fun creating all of these costumes. The inspiration was my best friend in grade school. At that time, we would go home for lunch and come back in our Halloween costumes. Her mother always made exceptional costumes for her and sometimes, they were so good she was totally unrecognizable when she returned. I decided I wanted to be the mother who made the cool costumes. It turned out, it was a fun way to celebrate Dear Son.

Now that he's too old.....I've been thinking about the cat. The cat's only five years old. I made two costumes over the years, the Cat in the Hat (with the cat sitting in the hat) and made a Batman costume due to the cat's coloring. He didn't like the second one. But I could also do, "Cat's in the Cradle" or "Catsup and Mustard" with the cat sitting in half of a catsup bottle (I would make the catsup and mustard bottles plus I have a Munchkin cat that's only seven pounds so he'd look cute) and have the catsup and mustard bottle on a red gingham tablecloth. Hmmm,.....I could take these pictures and make them into Halloween postcards......

The Tin Man

This is a Halloween picture of Dear Son as the Tin Man, pictured here with his Munchkin kitty. Dear Son is 9.5 years old in this picture. This is by far the most labor intensive costume that I made for Dear Son. For the costume, I took poster board and measured each body part and cut and velcroed the poster board in place. Once it was the right size, I covered the poster board in foil. I used silver face make up and covered a funnel for the hat. This is my favorite costume that I made for Dear Son.

*Note: I need to take the next two weeks or so to attend to some things that will require my full attention. As a result, I will not be posting until the end of the month. Until then, I will be posting some photos of Dear Son. I look forward to resuming my posts on a regular basis at that time.

The Next Food Network Chef?

This is my favorite chef....perhaps he could be the next Food Network Star? Photo is of Dear Son, age 6.5 years old. This is the only Halloween costume I didn't make.

*Note: I need to take the next two weeks or so to attend to some things that will require my full attention. As a result, I will not be posting until the end of the month. Until then, I have posted some photos of Dear Son. I look forward to resuming my posts on a regular basis at that time.

The Cat in the Hat

I thought I'd share some photos of Dear Son until I can get back to blogging at the end of the month. This is a photo of Dear Son as the Cat in the Hat, age 5.5 years old.

The Scarecrow

I thought I would share some photos of Dear Son until I get back*. I'll start with some Halloween photos.

This is a picture of Dear Son, age 4.5, as a scarecrow, in front of our house.

*Note: I need to take the next two weeks or so to attend to some things that will require my full attention. As a result, I will not be posting until the end of the month. I look forward to resuming my posts on a regular basis at that time.

Break

I need to take the next two weeks or so to attend to some things that will require my full attention. As a result, I will not be posting until the end of the month. I look forward to resuming my posts on a regular basis at that time.

Thank you for understanding.

Happy Birthday To Me!

Cathy over at Cathy’s Rants and Ramblin’s recently had a birthday and listed, “54 Things You Never Wanted To Know About Me”. We had quite a party so I decided to continue the tradition. Today is my birthday, so I decided to create my own list. I have also brought plenty of Diet Coke for all of you Diet Coke fans and plenty of Diet Pepsi. As for me, I am neither, I don’t like pop or any carbonated beverages. I did however make a little treat for today. It’s called, “Not Yo’ Mamma’s Banana Pudding”. It’s a pretty good recipe made by my favorite chef, Paula Deen. According to Paula, it got it’s name because one of her friends told her to try the recipe and it was called, “Mamma’s Banana Pudding”. When Paula tried it, she thought it was so good, she said that it certainly wasn’t “her” Mamma’s Banana Pudding because it was so delicious so she renamed it, “Not Yo’ Mamma’s Banana Pudding”. I love that story.

O.K. I was born at 9:21 p.m. on July 8th, 1958 making me 48 today and probably explains why I am a night person.

Here’s my list of 48 Things You Never Wanted To Know About Me:

1. I am terrible at being on time. I hate that about myself.
2. My two favorite things are flowers and children.
3. I am very romantic.
4. I usually need more sleep. I consider sleep a luxury.
5. I am very organized. Clutter gives me a headache. I am always looking for ways to be more organized.
6. I think smart men are really, really cool. And fascinating. And the best part, is that when they get really old, they are still really smart.
7. I like numbers and am very analytical.
8. I keep a perfect yard. I am the person who has beautiful flowers and never has a weed in her yard; I am the one who all the neighbors ask for lawn advice. Spending time gardening is my favorite hobby.
9. I enjoy being married.
10. I am terrible at fixing things. I like people who can.
11. I love fast cars. Like, really, really fast cars.
12. I am a fierce competitor.
13. I have no patience and can’t stand waiting for anything.
14. I admire people who stand by their values and their principles.
15. I can’t swim.
16. I am a great salesperson. I can sell anyone almost anything. I never lie when I sell though; I don’t believe in that.
17. I hate people who always talk about themselves.
18. I love hearing about how people got started in their business and business stories in general. I also love business shows like-Restaurant Makeover or Recipe for Success on the Food Network.
19. My favorite car that I have ever owned was an Infiniti I30. It was fast and luxurious; I used to say it was like when class and elegance meet technology.
20. Seeing Dear Son smile is the best part of my world.
21. I hate getting my oil changed (see #13 where I can’t stand waiting for something).
22. I like men with lots of hair on their chests. A lot. A really, really lot. And I love it when they wear their shirts unbuttoned so I can see it. (Wiping drool off now.)
23. I am very sensual.
24. My dream vacation would be to Bora Bora. Going to the Super Bowl would be close second. With the Green Bay Packers and Chicago Bears of course.
25. I love flying. Actually, I love the take off, especially if it’s a really fast jet. See number 11. I hate flying over water. I’ll do it but I really don’t like it. Ditto for driving over bridges.
26. I have always had really nice long nails.
27. I love the Tiffany window (display)in Boston. It’s my favorite window.
28. I would love to tour all the great flower and great water gardens of the world. 29. I also love historic homes and great architecture.
30. I would love to have a secret weekend place just for “you know what”. It would be a large studio with a huge bed overlooking a fantastic view, probably the ocean.
31. I wish these people were my inner circle: Martin Luther King Jr., Bill Gates, Paula Deen, Oprah Winfrey, Martha Stewart, Gary Comer, Eunice Shriver and Elvis Presley.
32. I like really fine china. For everyday use.
33. I am fascinated by houses-old house with beautiful woodwork and craftsmanship and new homes with beautiful lines and lots of windows.
34. I never forget when someone is really kind to me, especially when I need it.
35. I hate people who sell out.
36. When getting a gift, I always prefer a gift that someone made with their hands than one they purchased with their wallet.
37. I love technology. I just wish it came easier to me.
38. I like people who keep really clean cars.
39. I am not a morning person and don’t like people who are, but only when I get up.
40. I can’t parallel park.
41. I have a great choir voice. I love to sing in my car.
42. I love massages. When I go on vacation, I like to get one everyday.
43. I put all my laundry in color coded laundry baskets-white, dark and lights and then have two more, one for white towels and one for special wash.
44. I only use white towels. I also love white woodwork and lots of use lots of white in my interiors. I find white walls extremely boring though and institutional.
45. I love living near water.
46. I love a fireplace. I tend to use it almost eighteen hours a day in the winter. I don’t have one now though, and really miss it.
47. I keep a dream house notebook filled with all of the things I want in my next house. Did I tell you I was crazy about houses?
48. How you treat your children is more important than how you treat everyone else. How you treat the disabled or those less fortunate, comes a close second.

Retard

I received an e-mail from a friend of mine tonight. She has three children, one of which is special needs. Her daughter is severely retarded, along with a host of other issues. We e-mail regularly, mostly about what’s going on with our lives, but occasionally, we bounce medical issues or ethical issues off each other, since we both live the life as mothers of children with special needs. It is great because we can talk openly and freely about things with our children, that most people have never experienced or would never understand.

As mothers of children with special needs, we share a common bond. We are both good mothers and love our children deeply. We take good care of our children and are fine with their abilities and disabilities. While we certainly wish things were different, I doubt that either one of us could really imagine our special needs children as normal. If they were, it wouldn’t change anything about how we feel about them; we love them deeply and that’s that.

Several times in the past year, we have both had incidents were people have made derogatory statements about children/people with mental retardation. When these incidents have occurred, we usually will send an e-mail to each other discussing the incident. It is amazing to me, at which the frequency of these incidents is occurring. It is also hard to believe, that people in 2006, still think it’s “o.k.” to say these things.

Here’s the incident:

My friend went into a guitar place to speak with her son’s teacher after his bass lesson and walked past the front desk. It is a store where they sell guitars and stuff, and lessons are given upstairs. As she was walking by, she overheard a female customer saying, "I swear he looked like SUCH a retard playing that thing! I mean really, I told him, "Ferchrissakes, you look like a MONGOLOID!!!!" She was laughing her ass off. My friend said she wasn’t sure, but she thought she was talking about her poor son. The store owner just kind of mumbled – she really seems like such a nice person. She said she felt like the store owner didn’t know what to say or do. She said she didn’t say anything. And she didn't do anything, but she felt that she should have. Then again, she asked herself, "Why? What would I have accomplished?" Then she asks me, “What would you have done?”

I replied to her that I wasn’t sure what I would have done, mainly because when these things happen, I am so shocked at their insensitivity, that it leaves me speechless. I also responded to her and said that if you substituted the word “gay” and “fag” in the above incident for the words “retard” and “mongoloid” that the entire store would have been appalled at the conversation. People would have been appalled when reading the incident. The story might have been reported, harassment charges might have been filed, the story might have made the news in some areas. If you were to substitute the words, “black” in the above incident, people would have been appalled as well. But because it was the words, “retard” or “mongoloid”, it was somehow, okay.

I am amazed that some people still think it’s o.k. to make derogatory statements about people with mental and physical disabilities. I am amazed that people make statements about people who can’t defend themselves. I am amazed that people don’t understand how easily it can be for anyone to become disabled. I mean, you can get hit by a car and be severely disabled mentally and physically for the rest of your life.

Several months ago, I experienced an incident in the blogging world that had me very incensed. A fellow blogger, who is also a pediatrician, made a derogatory comment about “riding the short bus”. He didn’t seem to think there was any real problem with making such a derogatory statement like this. I was appalled that a pediatrician today could make such a statement and not see anything wrong with it. When I called him on it, he told me to stop reading his blog,that he could write whatever he wanted. Nice. The point isn’t that you can call people whatever you want because you have a blog, the point is that as a pediatrician, a professional, a human being and a father, you would think that someone who have more compassion than referring to those with mental disabilities in a derogatory manner. Aside from compassion, it’s just plain wrong. And then to accept money from these parents for your “professional” services, seems appalling. Can you really expect your mentally disabled child to be treated respectfully and with dignity by their pediatrician if they don’t see any problem with making derogatory statements like that in public no less?

In the end, I told my friend, that we need to come up with a response for people. When you are fortunate enough to have a child born normal, I suspect you don’t imagine what it might be like to have a child who is retarded. But ignorance is not acceptable anymore. It’s also not fair to Dear Son and children like him. He is not any less of a person because of disabilities. And to be referred to as the butt of anyone’s joke is totally unacceptable today.

Independence Day

We were all ready and excited to go to the balloon launch. Every year, Serena’s Song, the first wheelchair accessible hot air balloon, comes to our town, for an “Eyes To The Sky Festival” where several hot air balloons light up the sky at night. It’s a big festival that’s held fourth of July weekend. We get an invitation through the Special Education Co-op at Dear Son’s school. The invitation allows Dear Son a “tethered” ride in a hot air balloon. This means that it goes a few stories up in the air but is still attached to the ground. The balloon goes up at 6 a.m. or 6 p.m. Normally, we choose 6 a.m. since the odds of going up are usually better. The weather has to be perfect for a launch-it can’t be windy, rainy or too hot, otherwise the launch is scrubbed.

We drove to the festival. I selected a 6 p.m. launch which was unusual for us. I dressed Dear Son in a fourth of July red t-shirt and some shorts. Parking is difficult. Typically, they close off all of the main streets and many side streets for the four day festival. The Special Education Co-op sends us a special parking pass, that allows us to park in the handicapped lot, that is located close to the festivities. Without a pass, you can’t even access the street, even if you have handicapped plates, which I do. We showed our pass and got right in. It was still a distance away but closer than the regular parking. There were policemen directing traffic so all of the handicapped parkers were in a line waiting to get in. I drove in my spot and a few seconds later a beautiful new yellow Hummer pulled in beside me. It was bright, shiny and new. I salivated at the thought of having a nice big vehicle like that for Dear Son’s wheelchair. I could imagine how easy it would be to get the chair in and out of the back especially since it was very boxy, just perfect for the wheelchair. The boxier the SUV’s, the better they are for the wheelchair since you need the top of the wheelchair to clear the ceiling. Due to the width of the Hummer, I could still get a lot of stuff in the back. Normally, with my car, I can only fit the wheelchair in the trunk and nothing else. I couldn’t wait to talk to the owner and whoever was in the wheelchair and complement them on their beautiful vehicle. In the meantime, I was just excited to see it up close. I love cars and used to drive a luxury SUV many years ago, when I worked full time and had daycare for Dear Son. Now that I really need a bigger car, I can’t afford because there isn’t any daycare for the disabled and I stay home to care for him and work 10-12 hours a week.

I opened Dear Son’s rear door to let the air in while I got his wheelchair out of the trunk. If I don’t open the door, it might get too hot for him while I get his wheelchair out of the trunk. I waited while peeking out of the corner of my eye at the beautiful Hummer. Finally the first door opened. First, the father got out and then the mother. The back doors flew open and sounds of laughter exploded from the vehicle. They were sure having a good time. Then I waited until, not one, not two but three eighteen to twenty year old boys got out of the car. All were young, tan and gorgeous. Big muscles and athletic too. Except, no one had a wheelchair. Or a cane. Or a disability. As far as I could see. Nope. Not a single one. Now, yes, it’s entirely possible someone could have a disability that I couldn’t see, but overall, they all looked pretty healthy and there wasn’t a disabled body in the bunch.

My heart sank and I put my head down in disbelief. I didn’t say a word. They all walked to the festival and continued having a good time. Probably pretty excited that they used someone’s handicapped pass to put up in the window so they could secure a fantastic spot and wouldn’t have to walk far. Ten minutes later, I finally had Dear Son’s wheelchair out of the car, Dear Son strapped in securely, his diapers and supplies loaded onto the wheelchair, his feet strapped in and locked up the car. We were ready to go to the festival, some ten minutes after our Hummer friends left the vehicle. They were surely enjoying themselves by now.

We walked to the end of the parking lot but had trouble accessing the walkway below. There was a steep hill that we had to walk down to get to the walkway. Not a problem without a wheelchair, but very steep without a pathway. With a wheelchair, the weight of the person causes the chair to accelerate as you go downhill making it hard to steer since you need to pull back hard to control the chair. The dirt path was damp and the wheels were sticking in the mud and not able to roll smoothly. I sure could use those strong men now. There was no other way to get from the parking lot to the festival. And Dear Son was so excited. Finally, we made it. There would be several other people that I would see having the same difficulty we did on the way back.

We got to the balloon launch but the launch was cancelled due to the weather. It was just too windy. In the meantime, Dear Son needed to be changed. At the festival, there are all Port-A-John’s so we walked down the street to the nearest police station to use the accessible washroom. Accessible means that the doors are wide enough to get a wheelchair in the door and wide enough to get a wheelchair in the handicapped stall. It does not mean that if you can’t stand up or wear a diaper that there is a bench to change them on. No, it means that I have to bring lots of changing pads that I need to lie on the floor so I can lift Dear Son out of the wheelchair, put him on the ground, change his diaper in full view of everyone and then lift him back into the chair. Easy when they are five years old, maybe ten years old but now that Dear Son is 14.5 years old, I can’t deadlift his 136 pound body off the floor.

That particular year, I changed Dear Son in the washroom on the floor. Today, we had another invitation to go to the festival for his hot air balloon tethered ride. Since he’s getting so big, I opted to stay home.

Independence Day means a lot of things to a lot of people. To the disabled, Independence Day means having a day when you can go out somewhere and have fun and not have to deal with all the stresses of everyday life. Kind of like a holiday for us able bodied folks.

I look forward to an Independence Day, when the disabled can do the same things like the rest of us and life is easier, just for one day. In the meantime, I’ll try to spread the word that all hospitals and public places need to have a rest room that everyone can use, a bench to change people on, a curtain to pull around for privacy and just the basics.

Some people will be quick to say that we can’t afford to make such enhancements for such a small group of people. What they don’t realize, is that when you make these changes, a lot more people use them, than just the disabled. Women with small children might change them their, people might sit on the bench, etc. Hmm…maybe that’s why it’s called “universal design”.

Advance Directives-Part III: An Interesting Perspective and the Wrap Up

This is the conclusion of a three part series that chronicle the discussion surrounding Advance Directives, that took place in June during Dear Son’s most recent admission to Big Academic Medical Center for a second “suspected” MRSA hospitalization in less than one month.

Ex Utero posted a comment on Part I where he stated that he wondered what patients or people wanted to hear, during these conversations. So I decided that I would describe what types of information would be most helpful to me in this situation.

I think the first thing is understanding that putting directives in place for yourself and putting an Advance Directive in place for your children are two totally separate things. Putting an Advance Directive in place for a child, means essentially you are deciding when they will die. It’s a horrific place to be in and one I doubt most mothers or fathers could live with. I suppose the real issue boils down to the futility of his life-will the child get better or are the life saving methods that need to be employed and the pain and suffering that they cause him, worse than letting his die. Notice I did not say anything about the quality of Dear Son’s life. Dear Son has been severely disabled all of his life, so talking about his disabilities is a non-issue.

The next issue is understanding death itself. What will it look like and what exactly happens? As a physician, you have seen death many times, but I need to understand it better. I want to know if Dear Son is going to be in pain or going to suffer and how to minimize both the pain and the suffering. I know that when Dear Son has trouble breathing, his breathing gets extremely labored and at some point, it gets downright scary when he begins to gasp for his breath. I usually call the ER doc into the room at that point. This is not the last image I want to see of my son. I need you to tell me that it will be peaceful and that he will not suffer.

Finally, and this is most important, I need to know when it’s futile. I think Neonatal Doc talks about parents wanting them to do everything for their baby and pounding the lungs until they have every last breath out of them. Certainly, no mother or father wants to do that, but how do you know when you cross that line? How does a lay person know that? How am I supposed to know when it’s time to say, “enough is enough” and let my child die with dignity? I don’t have enough medical knowledge to know when the test results are coming back bad enough for this to be the case. Yes, I know the results but I don’t always know when it’s considered futile or when death is imminent.

What I want is for the physician to tell me this: “We have done everything possible for Dear Son. Based on his blood gases (or whatever test results are appropriate), his body does not appear to be responding to our efforts. While we could place him on the ventilator again, I think we would only be prolonging his pain and suffering; I am not sure how much more Dear Son can handle. I am sorry to tell you this and wish it could be different, but I think it’s time to say good bye to Dear Son and let him go peacefully in his mother’s arms. You have done everything possible for him that I would do for my own child. I think we should remove the Bi-PAP and I’ll make him comfortable. This means that he will not be in pain and he will not suffer. I will then give you and his father some time alone with him. If you don’t have any questions, then I will make him comfortable, remove the oxygen and give you that time.” I would also want some private time holding my son and talking to him alone in those last moments.

Finally, I received an interesting e-mail from a friend of mine, who also has a disabled child. We live several thousand miles apart however we write frequently about life in general and then about questions specifically related to issues with our disabled children, issues which we would never discuss with most of our other friends. In the midst of the hospitalization, I sent her an e-mail describing my turmoil over the choices as it related to Dear Son. After a few days, she responded with the following e-mail:

“I have thought a lot about your question down there regarding how far I would go to prolong my child's life. I see that you have some very specific questions - regarding making him comfortable and such - that you need to get cleared up before you can make any real decisions. I think that …..

Interestingly, I just watched a special on PBS called, "A Lion in the House." It was a series that followed children with cancer and their families for a period of years. I had never seen this show previously - I think there were seven episodes - and this was the finale. Normally, things like this show are just too painful for me to watch, but something inside of me told me to watch it. So, I did. I cried a lot. The show was heartbreaking. And you saw some of these kids die. Some of their parents went through heroic measures to save them. They kept getting them the chemotherapy, or whatever.

I thought of you. I know that you want to know you've done all you can for Dear Son. And I think a lot of these parents felt the same way. But, after their kids died, the show would check back with them. And several of them said that they'd wished they'd stopped trying sooner. I think it is easier to see this in retrospect, of course. But they felt that it benefited no one and was actually more harmful to their children to keep putting them through the medical stuff. It was hard on the kids emotionally and from a psychological point of view, they felt. And one of the kids' nurses talked about this a lot. She thought that it was really important to think about what was happening to the kids from an emotional point of view - having them go through all that they had to.

I thought that this was an interesting perspective. I would always want to say, "I did all I could for my child." And I would at least have that peace. But I never thought about looking back and wishing that I'd stopped sooner, as several of these parents did. Because I guess they knew that the child was going to die. And now that the child had died, they realized that it wasn't all that important to give them more time here, when the time is spent in that way.

It has really made me think a lot about this subject. And I've been thinking about it a lot since your e-mail. And I know we exchanged several long e-mails about this subject a long time ago.

I know that as parents, we do the best we can. There are some things that a parent should never have to decide. This is one of them. I would like to tell you that I would not let my child suffer. I would like to tell you that I would be able to separate out what is best for my child and what is best for me. I would like to be able to tell you that I would make the decision, stick with it and go through with it. But Dream Mom, I just can't. I just do not know what I would do if I were in your situation. It is a hell I never want to enter. And I'm sure that it is a very lonely place.

Please know that I am here for you. I am sorry I cannot give you better thoughts on this matter, as it is so very important. But I think that you are doing the best job anyone could do under the circumstances. I guess my best advice is to put Dear Son’s needs ahead of your own. Make the decision based on his situation - and not on your fear of what will happen to you when he dies. That is really the only advice that I have. Because when the time comes, you will know that you made your decision out of love and not out of fear.

One of the mothers of a survivor in this show tonight said that this ordeal taught her she can deal with anything. That it showed her how strong she is and that nothing is too much for her to handle now. I thought of you when she said that. Even if you wonder about your strength, Dream Mom, please know that I do not wonder about it. I know you have it and I know that you will find it when you need it. It is right there, in your heart.”

Advance Directives-Part II: It was just my imagination, running away with me…

This is the second of a three part series that chronicle the discussion surrounding Advance Directives, that took place in June during Dear Son’s most recent admission to Big Academic Medical Center for a second “suspected” MRSA pneumonia hospitalization in less than one month.

The discussion caught me off guard. I had thought a lot about directives in the last nine months but could never bring myself to taking action of any kind. I prayed for the chicken’s way out, that the Lord would take Dear Son when his time was up and that I wouldn’t have to make any decisions. I just can’t imagine that I could actually issue any directives, directives to take away my Dear Son forever. No, I just can’t imagine that. What mother could do that? Not this one.

After our conversation, I continued to get sicker. I was already feeling horrible and the discussion only added to my misery. Everyone around me kept asking me if I was glad that this hospitalization was going much better than the last one, but they just didn’t know. On the surface, yes, Dear Son wasn’t vented, but behind the scenes, well, that was definitely worse. I barely had time to go through last month’s medical bills, the total billed charges which were close to $200,000. All of which would be paid, no doubt, after discounts, but still, it was a big number. And a lot of paperwork for me to boot, paperwork that was piling up on my desk at home. This admission would be another ten days and I refused to calculate the numbers. No, I couldn’t let the numbers enter in the equation, but I can’t ignore them either. I can’t have a $200,000 hospitalization every month.

I begin to go through the scenarios twenty four hours a day. No, I can’t imagine coming here again. No, I can’t imagine living through another vent admission with Dear Son. I can’t imagine seeing my son lying like a corpse on a hospital bed, lifeless, with tubes and needles in every possible part of his body while his body slowly shuts down. No, I can’t imagine ever putting a trach in him. Not only do I have a weak stomach but I can’t begin to imagine the conversation that I would have with Dear Son telling him why we had to cut a whole in his throat while looking him in the eye. After all he’s been through, it wasn’t going to happen. So then, there was the big one. Was I going to put a Do Not Resusitate (DNR) in place? That’s what she wanted to know.

I tried to imagine exactly what that meant. Not in the literal sense, but just how that might play out. I tried to imagine coming to the Emergency Room, with Dear Son breathing fast and hard, having another MRSA pneumonia, and then at some point them asking me or I tell them that he has a DNR in place. The ER fills up fast, as it always does and somehow, in the midst of all the people, Dear Son has trouble breathing, looks me in the eye to help him and someone yells out in the Emergency Room that he has a DNR and not to help him. Dear Son hears this, looks at me, gasps for his last breaths and dies looking me in the eye and knowing that his mother didn’t help him. That’s the image that would replay in my mind over the next six days until I could get some answers. I couldn’t stop thinking about it. I realize that it might seem like an odd scenario, but if you’ve ever been in an ER, things tend to get really crazy, when it gets that busy. It’s not like I can go on-line and order a book right now.

I can think of nothing else over the next few days. It’s like a giant elephant is sitting on me and as much as I try not to think about it, as soon as I open my eyes, I see the giant elephant again. It just won’t go away.

I call the secondary insurance nurse and speak with her briefly. I ask her if she has someone I can speak to about this. She calls me back and arranges for me to speak with someone from a hospice organization. The nurse has been talking to me about hospice for over a year now but I am just not ready. It’s kind of like going casket shopping when you have stage four cancer-you know you need one but you don’t look forward to shopping. I take her phone number and decide to call her once I get out. I really need to speak to someone face to face, someone that knows me. I mean, how do you ask someone over the phone to describe in graphic detail, just how someone dies? What I really want to know is about the pain and suffering. Is Dear Son going to be in pain? I can’t live with that.

Next, I decide to have a conversation with the Family Advocate. The Family Advocate at Big Academic Medical Center is a man who I have spoken with on many occasions and who I can trust. I know he has just written a book on this topic and has been searching for a literary agent. I e-mailed him a few months back to see if he had found a publisher and to see how things were going with his book deal. He has his Master’s in Social Work and should be a good source of information. We arrange a meeting for later in the week.

In the interim, I run into the former Attending Doc from last month’s MRSA pneumonia. She’s the one who recommended the blood transfusion and who saved Dear Son’s life. She’s also the one who brought flowers for all of the mothers in the PICU on Mother’s Day when I thought Dear Son was going to die. How could I ever forget this woman?

She runs into me getting on the elevator and asks why I am here. After playing some catch up, I ask tell her about the conversation and ask her for specifics. I want to know, what exactly happens when they die. How does death happen? Are they in pain? Is he gasping? What? She explains that they can give him oxygen and morphine for the pain. I want to know how much oxygen and what kind. Are we talking a nasal cannula, Bi-PAP machine or what? What is the cut off? We talk a bit more and then she gives me some additional information. I learn that the Attending Doc who spoke with me also sits on a Pediatric Medical Ethics Committee. I tell her I will probably speak with her again once I get some additional information. I make sure to thank her again for the flowers and tell her how much it meant to me that she thought of me on Mother’s Day, when I thought my son was going to die. I’ll never forget that moment when he was so close to death and then she brought in the flowers, it was like the sky just opened up and things were going to be all right.

I finally meet with the Family Advocate, some six days after the conversation with the PICU Attending. He walks me through a lot of things, namely the death. He tells me how long the DNR is for, how it is negated and some other things. He also tells me what to say. Apparently, when they are at the end they go through a stage where they are uncomfortable and begin to panic, then you need to ask for something to make them “comfortable” and not for “morphine”. The part about them being uncomfortable and panicking made me uneasy. I ask him the big question, “How do you know when it’s time?” He says, “It’s time when they don’t get any more pleasure out of life.” “Dear Son is not there yet.”

I leave the room, relieved, relieved he has answered a lot of questions for me. I thank him for his help. I can sleep now that I have some answers.

I think long and hard over the next few days. In the past two years, Dear Son has lost his ability to walk, his ability to sit and most recently his ability to eat anything by mouth. He has two things left, he can still process his food and he is happy. I never imagined in my wildest dreams that life would boil down to this. I just can’t imagine ever living without seeing that smiling face every day. But it’s not just about me anymore.

I decide over the next few days that I just can’t put a DNR in place at all. I just can’t live with myself. I need to help Dear Son as much as possible. The only decision that I allow myself to make is that if he gets this pneumonia again, that I’ll wait until the physician tells me it’s time, that he won’t make a recovery and then I’ll worry about it then and decide what is best. That’s all I can do. In the meantime, I pray. I pray that I will never have to make these decisions. Sometimes, we are too smart for our own good. We can save nearly anyone and yet in the beginning people have to “choose” life and in the end, we have to “choose” death. I don’t get it. Oh yes, we are sophisticated all right.