You never really know if it’s the last Thanksgiving. For many years, I’d celebrate Thanksgiving with my family by either cooking a turkey or going to someone else’s home for the big day. The day would be filled with turkey of course, then lots of delicious food, too much to eat on any one day.
This year of course is different. Dear Son has made it through the MRSA pneumonia in May, lived through a relapse in June and celebrated his 8th grade graduation and his birthday last week. I have a lot to be thankful for.
I spent the last week thinking about his days in the Pediatric Intensive Care Unit (PICU) at Big Academic Medical Center and the hard work of Dr. B, who saved his life the day he was airlifted to Big Academic Medical Center from Local Hospital. I thought about how tirelessly the whole team worked for twelve hours straight to save Dear Son’s life. I thought about how she saved him, and kept him from dying on Mother’s Day and how she brought tulips in for all of the mothers in the PICU, on that day. It was at that moment, that I thought that perhaps there was hope, that my prayers were going to be answered on that day. And they were. Dear Son lived.
He lived to attend his eighth grade graduation just a week after he was dismissed from the hospital, only to suffer a suspected relapse of the MRSA pneumonia a week later.
He made it through the summer, and was able to attend high school in the fall. Imagine that, high school.
He made it through the fall to celebrate his 15th birthday last week.
He made it through yesterday, to get his fancy new tilt wheelchair, so he can sit up better and we can enjoy our walks.
Yes, I have a lot to be thankful for this Thanksgiving, even if he can’t eat turkey anymore. I suppose I can just say a prayer right before I pour the PediaSure into the feeding bag. I’ll thank the Lord for another minute, another hour and another day with Dear Son. I’ll kiss his beautiful face and get down on my knees and say thanks. Thanks for another holiday with the one I love. It could have been worse…if he died, I’d be remembering my last Thanksgiving with Dear Son and instead I am enjoying this one, turkey or no turkey. I think that is cause for a celebration.
Wednesday, November 22, 2006
Tuesday, November 21, 2006
News
Recently, I have received several invitations from various organizations regarding publication of my blog. This post is to notify you that I have recently accepted an invitation from the lead editor at Pluck Corporation to become part of BlogBurst, the world’s largest blog syndication network. Pluck Corporation operates BlogBurst, and distributes the content to media sites and newspapers around the world. Recently, Reuters has formed a strategic alliance with Pluck Corporation, to syndicate third party blog content as part of Reuters news and information service. Under the terms of this agreement, Reuters will offer BlogBurst’s syndication service to thousands of its media customers worldwide including The Washington Post and the Gannett newspaper chains, among others. You can read more about Reuter’s and Pluck Corporation’s agreement here and here. Here is an example from the Reuter’s website. I am excited about this new opportunity and would like to thank you all for your support and your interest in Dear Son.
Sunday, November 12, 2006
Happy 15th Birthday to Dear Son!
Today is Dear Son’s birthday. To celebrate his birthday, here are fifteen things he would like to tell you about himself:
1) I love a party.
2) I am happiest when I am in a room full of people.
3) Most people compliment me on my blue eyes or my smile.
4) I love country music but my Mom doesn’t care for it. Gretchen Wilson is my favorite country singer. One of my teacher’s introduced me to her music.
5) My best friend in my talking Barney. He keeps me company.
6) I love going for a walk and swinging.
7) I enjoy sitting in my rocking chair.
8) I like it when people get in trouble. It really makes me laugh. I laugh really hard and loud and sometimes people think I am having a seizure.
9) I look exactly like my father but people tell me I have my mother's personality.
10) I love beautiful girls.
11) I am very extroverted.
12) I like it when my cat gets in trouble.
13) I smile when I meet new people.
14) I like listening to music on my headphones.
15) Animals love me.
*This is my favorite picture of Dear Son. It was taken when he was 13.5 years old when he could still sit up and hold his head up.
Friday, November 10, 2006
Killing Me Softly With His Song
We had been sitting there waiting for the doctor to come in. Dear Son, head down, hanging to the left as it always does now, as if his left ear were somehow sewn to his chest; he is quiet, ready to lie down, as he always is, after just a few minutes in the chair. My body was aching, my back throbbing and every square inch of my body hurting, like I had been in a terrible car crash, only there was no crash. Instead, it was as if all of my insides had been torn out from lifting Dear Son, just another casualty of his disease, kind of like a two for one deal.
The progress report had come home from school the other day. They described how Dear Son would fuss after just four to five minutes in his chair, when they wanted him to attend to something. I knew it had nothing to do with attending to the object or lesson; he was fussing because he desperately needed to lie down, unable to sit up any longer. It was just another sign, that things were never going to get better. I looked over the IEP (Individual Education Plan) and saw that none of the goals we had created last year, would ever be attained. I had no idea of what we should do. I knew really, that there could be no goals, because we were on the downside of the hill, so to speak, and just coasting to the finish line, the kind you never want to cross.
It was just yesterday morning, when he boarded the school bus, head down while the aide gently secured him in. Once boarded, the school bus drives around the bend, turns around, then passes me once again as it heads towards school. I usually wait, because I like to get another glimpse of Dear Son and wave to him as he passes by. It is doubtful he sees me though, because his head lies down on his chest, like a broken dolly, that a child has loved too much. The kind of dolly that is ready for the trash, but that no little girl, will ever part with.
The progress report, along with his ailing body, were just two of the examples I would talk to the doctor about. His seizures, were fairly well controlled with the medications, however his night breathing was another story. Night after night, I would lie on my bed, listening to the watery breathing, as the saliva settles in his throat and he tries to breathe through it. The breathing is loud and cuts through the night, easily heard, by ears of any age. I wait until he can breathe easily again; sometimes, I wait a long time. He is unable to control his own saliva anymore and it often backs up in his throat. I spray the Atrovent into his mouth, to decrease the secretions, but I am never convinced, it does much good. The breathing rages on, and I listen night after night, with the same uneasiness like a mother hearing her newborn crying in another room in the hospital, unable to save him from the spinal tap he is receiving. You never forget that cry, or the pit in your stomach, when you hear your baby cry. I remember that cry too, it’s all there, still fresh, as if sitting on the edge of my brain, waiting for a recall. Some nights, he and I get lucky, but other nights, it’s terrible and neither one of us sleeps very well.
The nurse comes in and sees Dear Son. She speaks softly and gently strokes his hair with her hand. She asks how he’s doing and I look away, avoiding any eye contact, so as not to cry, as I tell her he’s not doing so well. She knows this of course, but she’s being polite. I tell her about his birthday on Sunday, hoping to get a smile out of Dear Son. He loves a party and loves his birthday. He’ll be fifteen then, all but ten weeks of those, spent at Big Academic Medical Center, and with Ped Neuro Doc, who’s seen him from the beginning. It’s hard to believe, it’s been that long.
The visit begins and soon thereafter, they are checking the readings on his Vagus Nerve Stimulator. When it was implanted, Dear Son was so thin, that the device stuck out under his armpit, easy enough for a child to find. Today, the only telltale sign, is the scar that remains from the surgery. The nurse tries to hold the device, Ped Neuro Doc holds Dear Son’s arm up and away and I hold his head to the opposite side, to assist in the reading. I had offered to lift him onto the table however the doc thought we could manage by leaving him in the chair. The nurse drops the device and tries again repeatedly only she can’t get a reading and then can’t find her pen. I look at the doc and tell him it’s like a bad neurology joke. With that, Dear Son erupts in laughter immediately, his belly laughs only adding to chaos of trying to get a reading. Next the doctor starts laughing and soon we all are laughing, Dear Son leading the way. That’s the essence of Dear Son, always loving a good laugh and with a laugh that’s so contagious, you can’t help yourself. It’s the kind of story, you would tell at a funeral, at least that’s what flashed through my head.
The visit ends with a discussion of the surgeries. Tonsils and adenoids removed, to open the throat for breathing and a Nissen, to help with the reflux. I ask if it can all be performed before the end of the year, since we’ve met our stop loss. Our stop loss, is met every year now, as a formality. That’s when you know, the disease has you.
We leave the visit, my hands full with the required prescriptions and I get in the car for the long drive home. I wonder now, with all of the suffering, how much is too much. When do we stop? When does it end? It’s like trying to make your ride last longer at the amusement park. Somehow, it’s never as good when you do that. But when do you stop, that’s the question. When is enough finally enough? I look back at Dear Son, head on the pillow that’s become mandatory in the back seat, and see his gorgeous face. He’s quiet and sad, as he is most of the time now. I start talking about his birthday and the small party we will have on Sunday. I tell him that we will all be singing “Happy Birthday” to him and he begins to perk up. He just loves a party. I sing the song to him and when I get to the last line, I add on the “and many more” as if saying it will somehow increase his lifespan. After all, it’s only a matter of time, before the last candle will go out.
The progress report had come home from school the other day. They described how Dear Son would fuss after just four to five minutes in his chair, when they wanted him to attend to something. I knew it had nothing to do with attending to the object or lesson; he was fussing because he desperately needed to lie down, unable to sit up any longer. It was just another sign, that things were never going to get better. I looked over the IEP (Individual Education Plan) and saw that none of the goals we had created last year, would ever be attained. I had no idea of what we should do. I knew really, that there could be no goals, because we were on the downside of the hill, so to speak, and just coasting to the finish line, the kind you never want to cross.
It was just yesterday morning, when he boarded the school bus, head down while the aide gently secured him in. Once boarded, the school bus drives around the bend, turns around, then passes me once again as it heads towards school. I usually wait, because I like to get another glimpse of Dear Son and wave to him as he passes by. It is doubtful he sees me though, because his head lies down on his chest, like a broken dolly, that a child has loved too much. The kind of dolly that is ready for the trash, but that no little girl, will ever part with.
The progress report, along with his ailing body, were just two of the examples I would talk to the doctor about. His seizures, were fairly well controlled with the medications, however his night breathing was another story. Night after night, I would lie on my bed, listening to the watery breathing, as the saliva settles in his throat and he tries to breathe through it. The breathing is loud and cuts through the night, easily heard, by ears of any age. I wait until he can breathe easily again; sometimes, I wait a long time. He is unable to control his own saliva anymore and it often backs up in his throat. I spray the Atrovent into his mouth, to decrease the secretions, but I am never convinced, it does much good. The breathing rages on, and I listen night after night, with the same uneasiness like a mother hearing her newborn crying in another room in the hospital, unable to save him from the spinal tap he is receiving. You never forget that cry, or the pit in your stomach, when you hear your baby cry. I remember that cry too, it’s all there, still fresh, as if sitting on the edge of my brain, waiting for a recall. Some nights, he and I get lucky, but other nights, it’s terrible and neither one of us sleeps very well.
The nurse comes in and sees Dear Son. She speaks softly and gently strokes his hair with her hand. She asks how he’s doing and I look away, avoiding any eye contact, so as not to cry, as I tell her he’s not doing so well. She knows this of course, but she’s being polite. I tell her about his birthday on Sunday, hoping to get a smile out of Dear Son. He loves a party and loves his birthday. He’ll be fifteen then, all but ten weeks of those, spent at Big Academic Medical Center, and with Ped Neuro Doc, who’s seen him from the beginning. It’s hard to believe, it’s been that long.
The visit begins and soon thereafter, they are checking the readings on his Vagus Nerve Stimulator. When it was implanted, Dear Son was so thin, that the device stuck out under his armpit, easy enough for a child to find. Today, the only telltale sign, is the scar that remains from the surgery. The nurse tries to hold the device, Ped Neuro Doc holds Dear Son’s arm up and away and I hold his head to the opposite side, to assist in the reading. I had offered to lift him onto the table however the doc thought we could manage by leaving him in the chair. The nurse drops the device and tries again repeatedly only she can’t get a reading and then can’t find her pen. I look at the doc and tell him it’s like a bad neurology joke. With that, Dear Son erupts in laughter immediately, his belly laughs only adding to chaos of trying to get a reading. Next the doctor starts laughing and soon we all are laughing, Dear Son leading the way. That’s the essence of Dear Son, always loving a good laugh and with a laugh that’s so contagious, you can’t help yourself. It’s the kind of story, you would tell at a funeral, at least that’s what flashed through my head.
The visit ends with a discussion of the surgeries. Tonsils and adenoids removed, to open the throat for breathing and a Nissen, to help with the reflux. I ask if it can all be performed before the end of the year, since we’ve met our stop loss. Our stop loss, is met every year now, as a formality. That’s when you know, the disease has you.
We leave the visit, my hands full with the required prescriptions and I get in the car for the long drive home. I wonder now, with all of the suffering, how much is too much. When do we stop? When does it end? It’s like trying to make your ride last longer at the amusement park. Somehow, it’s never as good when you do that. But when do you stop, that’s the question. When is enough finally enough? I look back at Dear Son, head on the pillow that’s become mandatory in the back seat, and see his gorgeous face. He’s quiet and sad, as he is most of the time now. I start talking about his birthday and the small party we will have on Sunday. I tell him that we will all be singing “Happy Birthday” to him and he begins to perk up. He just loves a party. I sing the song to him and when I get to the last line, I add on the “and many more” as if saying it will somehow increase his lifespan. After all, it’s only a matter of time, before the last candle will go out.
Tuesday, November 07, 2006
The Clothes Make the Man
I was driving around the block, in this new neighborhood, waiting to meet a friend when I came upon the stop sign. To my right, was the new high school. It was several stories high, all brick, and quite imposing. What I noticed most were all the steps to get in. The kids were all walking towards the school since it would be starting soon. It was a cool fall day and the boys were dressed mostly in jeans and short sleeved t-shirts or jeans a sweat jacket of some sort, unzipped and open. Many did not have on closed toe shoes. The girls were dressed similarly only the jeans were tighter and the t-shirts were smaller. They too, had a thin jacket, unzipped and open. The temperature was less than thirty degrees on this day. I thought about the clothes that I dressed Dear Son in today, a heavy fall jacket, long sleeve shirt and sweat pants. I looked around and couldn’t find any of the teenagers, dressed this warm.
I was taking in everything I could, as I slowly drove down the street. I was thankful I was in a school zone so I could absorb all of their actions. This was after all, the high school in our district, the one he should have gone to. I say should, because they denied his admission, even within the Special Education Cooperative, since they did not have the facilities to care for him. What they really meant was that he was too “disabled” for their school. Secretly, I was happy. I had been afraid to send him here, because none of the kids in his classroom would be here, nor any of his aides, nor any of the teachers that knew him. Heck, even the bus company changed. There would be no one that would know anything about Dear Son.
You can’t imagine how that would be. Some of the kids in his classroom could at least speak, and they could have provided some information about him but with no one, I worried about what might happen. Even with a new aide, you always wonder if they will be good to him and also if the school kids would be good. Most often, they just ignore these kids.
I was curious especially about their clothes. One of the advantages of special needs children, is that you can buy them whatever you like, at least if they can’t speak or express their wants or needs. With Dear Son, I could buy whatever I liked and did. I never had to worry about what the trends were at school and usually, he was one of the best dressed. He still fit in of course, but he looked great. I had a rule though, from the very beginning. I made sure never to buy any sweat pants of any kind. That was what disabled people wore and I certainly didn’t want him to “look” disabled. I returned every gift that he ever got, that included sweat pants. I was never ashamed of Dear Son but I loved to dress him well to not only celebrate him but also as a reminder that someone was at home who cared about him and that I was paying attention. Paying attention, meaning, if they were going to mess with him, I was going to find out and then they would have to deal with me. That’s always the fear of the parent of a disabled child, that someone will mess with them.
Dear Son is almost fifteen now and the past year or so hasn’t been kind to him. Not only has he gone through puberty and put on some weight with one of his meds, he can’t move much. This makes dressing particularly problematic since he can’t seem to help at all. I have had some training by the occupational therapists, but it’s still pretty difficult. It was this past year, that I finally broke down and purchased some elastic waist sweat pants. He has other pants certainly, some jeans and some khakis, however the easiest ones to put on and off are the sweat pants. I have to roll him from side to side to get on his pants and it’s nearly impossible to lift his hips off the bed to put on his pants. If I am trying to put on jeans or khakis, by the time I get them up on him, the zipper may be crooked and it’s hard to line everything up, which is where the sweat pants come in. Also, since he’s still in diapers, this is a major issue.
This clothing issue, is why I was so fascinated to watch the other teenagers walking to high school. Did Dear Son fit in anymore? How would he be perceived if he were “normal”? Not a fair statement at all since if he were normal, then he’d be wearing more fitted jeans, in different washes, like the ones that hang in his closet, but that he never wears. He’d also be dressing himself, buying some of his own clothes and certainly wouldn’t need any “extra” room in his jeans for his diaper or for his leg braces. It’s pretty hard at fifteen to buy jeans for him, since most of them are fitted, and don’t allow extra room for these things.
The clothing issue, is what prompted an e-mail from a friend of mine in another state. Her daughter is severely mentally and physically disabled and is extremely small for her age. She is eleven and size of a five year old. She participates in an online group and came across a message post one day where someone randomly asked why all disabled people were dressed like babies. She was crushed. They weren’t asking her, mind you, just asking a general question. She was in tears. She had just purchased a Disney t-shirt that she thought her daughter would love but after seeing the post, refused to dress her in it, because it might appear too “babyish”. Her daughter, wears a full body brace and requires elastic pants. She also wears a onesie cotton t-shirt with snaps, under her brace, to make it more comfortable, when she sweats. She e-mailed me to get my thoughts on this matter.
I find it ironic that mothers of disabled children worry so much about their clothing. We just want our kids to fit in and to be kids. It’s ironic because in Dear Son’s case, many of his high school peers wear pull on nylon sweat pants, and they aren’t disabled. Many normal girls also wear yoga pants so to dress them in pull up elastic pants, isn’t so horrible. I doubt normal teenagers worry they look disabled in sweat pants. Maybe we shouldn’t care so much either.
I thought about this as I dressed him for school today. In a defiant mood, I took his Lucky Brand jeans out of the closet and put them on. After several minutes, they were up. I reached in for the zipper to pull it up and there was the hang tag sewn next to the zipper. It said, “Lucky You”.
*Photo was taken in August of 2005 at age 13.5 years old. This is my favorite picture of Dear Son and is the last photo I have of him, where he was able to sit up straight, even if only briefly.
I was taking in everything I could, as I slowly drove down the street. I was thankful I was in a school zone so I could absorb all of their actions. This was after all, the high school in our district, the one he should have gone to. I say should, because they denied his admission, even within the Special Education Cooperative, since they did not have the facilities to care for him. What they really meant was that he was too “disabled” for their school. Secretly, I was happy. I had been afraid to send him here, because none of the kids in his classroom would be here, nor any of his aides, nor any of the teachers that knew him. Heck, even the bus company changed. There would be no one that would know anything about Dear Son.
You can’t imagine how that would be. Some of the kids in his classroom could at least speak, and they could have provided some information about him but with no one, I worried about what might happen. Even with a new aide, you always wonder if they will be good to him and also if the school kids would be good. Most often, they just ignore these kids.
I was curious especially about their clothes. One of the advantages of special needs children, is that you can buy them whatever you like, at least if they can’t speak or express their wants or needs. With Dear Son, I could buy whatever I liked and did. I never had to worry about what the trends were at school and usually, he was one of the best dressed. He still fit in of course, but he looked great. I had a rule though, from the very beginning. I made sure never to buy any sweat pants of any kind. That was what disabled people wore and I certainly didn’t want him to “look” disabled. I returned every gift that he ever got, that included sweat pants. I was never ashamed of Dear Son but I loved to dress him well to not only celebrate him but also as a reminder that someone was at home who cared about him and that I was paying attention. Paying attention, meaning, if they were going to mess with him, I was going to find out and then they would have to deal with me. That’s always the fear of the parent of a disabled child, that someone will mess with them.
Dear Son is almost fifteen now and the past year or so hasn’t been kind to him. Not only has he gone through puberty and put on some weight with one of his meds, he can’t move much. This makes dressing particularly problematic since he can’t seem to help at all. I have had some training by the occupational therapists, but it’s still pretty difficult. It was this past year, that I finally broke down and purchased some elastic waist sweat pants. He has other pants certainly, some jeans and some khakis, however the easiest ones to put on and off are the sweat pants. I have to roll him from side to side to get on his pants and it’s nearly impossible to lift his hips off the bed to put on his pants. If I am trying to put on jeans or khakis, by the time I get them up on him, the zipper may be crooked and it’s hard to line everything up, which is where the sweat pants come in. Also, since he’s still in diapers, this is a major issue.
This clothing issue, is why I was so fascinated to watch the other teenagers walking to high school. Did Dear Son fit in anymore? How would he be perceived if he were “normal”? Not a fair statement at all since if he were normal, then he’d be wearing more fitted jeans, in different washes, like the ones that hang in his closet, but that he never wears. He’d also be dressing himself, buying some of his own clothes and certainly wouldn’t need any “extra” room in his jeans for his diaper or for his leg braces. It’s pretty hard at fifteen to buy jeans for him, since most of them are fitted, and don’t allow extra room for these things.
The clothing issue, is what prompted an e-mail from a friend of mine in another state. Her daughter is severely mentally and physically disabled and is extremely small for her age. She is eleven and size of a five year old. She participates in an online group and came across a message post one day where someone randomly asked why all disabled people were dressed like babies. She was crushed. They weren’t asking her, mind you, just asking a general question. She was in tears. She had just purchased a Disney t-shirt that she thought her daughter would love but after seeing the post, refused to dress her in it, because it might appear too “babyish”. Her daughter, wears a full body brace and requires elastic pants. She also wears a onesie cotton t-shirt with snaps, under her brace, to make it more comfortable, when she sweats. She e-mailed me to get my thoughts on this matter.
I find it ironic that mothers of disabled children worry so much about their clothing. We just want our kids to fit in and to be kids. It’s ironic because in Dear Son’s case, many of his high school peers wear pull on nylon sweat pants, and they aren’t disabled. Many normal girls also wear yoga pants so to dress them in pull up elastic pants, isn’t so horrible. I doubt normal teenagers worry they look disabled in sweat pants. Maybe we shouldn’t care so much either.
I thought about this as I dressed him for school today. In a defiant mood, I took his Lucky Brand jeans out of the closet and put them on. After several minutes, they were up. I reached in for the zipper to pull it up and there was the hang tag sewn next to the zipper. It said, “Lucky You”.
*Photo was taken in August of 2005 at age 13.5 years old. This is my favorite picture of Dear Son and is the last photo I have of him, where he was able to sit up straight, even if only briefly.
Sunday, November 05, 2006
Pediatric Grand Rounds is up!
Friday, November 03, 2006
Dear Son Diagnosis Update
I met with Dear Son's geneticist last week. Previously, as I reported here, he had listed Dear Son's diagnosis as Partington's Syndrome which was caused by a mutation of the ARX gene. Since that time, they have learned a little bit more and they have dropped the Partington's Syndrome from his diagnosis. His diagnosis is "Cryptogenic Infantile Spasms caused by the ARX Mutation"; they do not have a formal name for it as of yet so this is simply how they have described the diagnosis. As he explained, the reason for the cryptogenic part is that frequently the seizures do not initially show up on the EEGs however at some point, the EEGs will get progressively worse until it will show that they are seizing all the time. The reason for dropping the Partington's Syndrome had to do in part with the dystonia-upon further examination, the hand movements are not dystonic in nature but different. I can't recall the precise term that he used however it he described it to the other two physicians that were present in our visit as a twisting backward of the hand/wrist. The picture above is an example of the unusual positioning of his hands and when his arms are down, the left wrist will remain flexed as positioned above but twist backward. Two years ago, we met with the geneticist and a movement expert and they videotaped Dear Son at Big Academic Medical Center to document the hand movements in particular that are unique to the ARX mutation. This videotape is still used today to educate other physicians on this disorder. I signed a new consent form so that this could continue to be shared and distributed.
He has also shared with me that in the total knockout cases of the gene, those boys are born without any testosterone. At the present time, there are only two places in the U.S. testing for ARX at the present time, Boston and Chicago. See the link above for more information on where you can get tested.
As I recall, there are still less than 80 cases total that the geneticist is aware of with the ARX gene however eight of the last ten cases tested positive with the same gene pattern as Dear Son. This brings the total number of cases for Dear Son's gene pattern to 13 or 14 cases.
Tuesday, October 31, 2006
Happy Halloween
In case you missed it, here are some photos of Dear Son’s Halloween costumes through the years:
Age 1-M & M
Age 4.5- The Scarecrow
Age 5.5- The Cat in the Hat
Age 6.5- The Chef
Age 9.5- The Tin Man
Age 10.5- The Jack in the Box
There are some gaps through the years, when he was sick.
I am not back to blogging but just an occasional post here and there. A new post, “The Swing” is below.
Monday, October 30, 2006
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.
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.
Monday, October 02, 2006
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.
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.
Wednesday, September 06, 2006
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.
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.
Monday, September 04, 2006
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.
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.
Tuesday, August 29, 2006
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.
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.
Sunday, August 27, 2006
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.
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.
Tuesday, August 22, 2006
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.
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.
Monday, August 21, 2006
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.
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.
Wednesday, August 09, 2006
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.
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.
Tuesday, August 08, 2006
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.
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.
Sunday, August 06, 2006
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.
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.
Wednesday, August 02, 2006
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.
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.
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