Scarecrow-Age 4.5
Tin Man-Age 9.5
The Chef-Age 6.5
Jack-in-the-Box-Age 10.5
Cat in the Hat-Age 5.5Wednesday, October 31, 2007
Halloween Through the Years
Scarecrow-Age 4.5Tin Man-Age 9.5The Chef-Age 6.5Jack-in-the-Box-Age 10.5
Cat in the Hat-Age 5.5
Monday, October 15, 2007
Gone Fishin’
We had walked around the golf course many times over the last six years. The walking trail, was located behind the apartment complex, and clearly visible from the clubhouse and from all the best locations on the property. To the south of the apartment complex were luxury condominiums that we would pass as we walked our normal route. Our normal route, started behind the clubhouse, then trailed south along the various ponds and waterways, crossing the bridge as it meandered west for a short distance before we would turn and head north on the opposite end of the course. Crossing the bridge was always beautiful. We’d see the burning bushes on the east side and on the west side, in the spring, the lilac bushes would bombard our senses as we turned the corner after the bridge. The lilac bushes were vastly overgrown and would crowd the bridge where it met the trail, making it dangerous to cross. If you weren’t careful, someone on a bike might run into you, since you would not be visible due to the outgrowth. The outgrowth or overgrowth, was in stark contrast to the beautifully maintained landscape on both the golf course and the properties that ran along the trail.
The bridge was always interesting though. There were always small groups of men, usually two or three of various ages, that would stop to fish. Some had clearly fished before, as evidenced by their tackle boxes, and others looked fairly new. Sometimes we see a father and his sons or maybe a grandpa and his grandchildren or sometimes just small young boys around ten or so, making their way down to the underpass to fish. For the most part, there was always a lot more fishing than catching going on.
Ever since Dear Son was small, I’d take him for walks. We were fortunate enough to always have a walking trail nearby, that somehow always ran along a river or body of water. Dear Son loved these walks, squealing the minute I’d open the door, and then settling down once the fresh air hit his face. As much as he loved the walks, he never paid much attention to his surroundings or to the people on the trail. Moving to this area, proved no different. We’ve made good use of this trail and it wasn’t until recently that Dear Son began to notice some of the things on our walks. For many years, I’d point out the different birds, ducks, geese or other animals that would surround the trail and he’d never notice. He always paid more attention to what he heard than to what he saw. That was until he saw them fishing.
It was only a month after my back surgery when we did our first walk around the trail. As we crossed the bridge, we heard them talking and I knew they had been fishing. The man, who appeared to in his fifties, was fishing with his two young sons. They had been casting when we had started to cross the bridge when all of a sudden he caught a fish. The young boys were delighted with their Dad’s catch and it was quite a catch at that. Normally, the biggest fish I’d see were six inches or less and this was clearly a foot and a half or so long. We stopped at the bridge and I talked to Dear Son about what was happening. I turned his wheelchair towards the men so he could get a good view. It’s really hard to get him to focus on things so far away and although they were only twenty feet down or so, it’s a lot for him to grasp. The man heard us talking, saw Dear Son and held the fish up for him to see. I couldn’t particularly tell if Dear Son really got it or not and soon we were on our way. We finished the trail and turned around to come back when we crossed the bridge again. The men were gone however Dear Son threw his leg out of the wheelchair indicating he wanted to stop and watch them fish. I told them the “men” had gone home and there was nothing to watch. We finished our walk and went home.
So this weekend we walked again and got to the bridge. As we approached the bridge, I talked to Dear Son about what I saw ahead. I told them there were three “men” fishing. We call all male persons “men” now that he is a teenager and he seems to take special pride in knowing that he’s a man. As we got closer, I noticed they were teenagers, about his age. I told Dear Son that and he got rather excited. As we approached the bridge, he started yelling out to get their attention. I stopped on the bridge to talk to them and see if they caught anything. I told them the story of the man who had caught the big fish just weeks before. I doubt they cared much and the only reason I stopped was because Dear Son wanted to stop there. He wanted to go fish with the “men.” Teenagers his age though don’t have much interest in boys like him and it’s sad sometimes when just a little conversation would go a long way.
I thought about the bridge and how much it would mean for Dear Son to go fishing with them, to do a little male bonding. The path to the fishing hole was steep and loaded with giant boulders. I could understand how the boys would like it. It was as rugged as you could get, at least in suburbia. As much as I could see, there’d be no way to get a wheelchair down there, no matter how much you’d like to.
I thought about the boys fishing some more. I thought about the fathers teaching their sons to fish and the boys remembering the good times fishing and catching the “big” one. I thought about how the young boys would go home and tell their mother about the big fish that Dad caught. And then I thought about Dear Son. He’d never learn to fish and even if he went fishing, he couldn’t hold the rod and couldn’t catch a fish. Sometimes, though, it’s not about the fishing or even the catching that’s important. It’s about being present in the moment. And on that day, he was in the moment, and loving every minute.
The bridge was always interesting though. There were always small groups of men, usually two or three of various ages, that would stop to fish. Some had clearly fished before, as evidenced by their tackle boxes, and others looked fairly new. Sometimes we see a father and his sons or maybe a grandpa and his grandchildren or sometimes just small young boys around ten or so, making their way down to the underpass to fish. For the most part, there was always a lot more fishing than catching going on.
Ever since Dear Son was small, I’d take him for walks. We were fortunate enough to always have a walking trail nearby, that somehow always ran along a river or body of water. Dear Son loved these walks, squealing the minute I’d open the door, and then settling down once the fresh air hit his face. As much as he loved the walks, he never paid much attention to his surroundings or to the people on the trail. Moving to this area, proved no different. We’ve made good use of this trail and it wasn’t until recently that Dear Son began to notice some of the things on our walks. For many years, I’d point out the different birds, ducks, geese or other animals that would surround the trail and he’d never notice. He always paid more attention to what he heard than to what he saw. That was until he saw them fishing.
It was only a month after my back surgery when we did our first walk around the trail. As we crossed the bridge, we heard them talking and I knew they had been fishing. The man, who appeared to in his fifties, was fishing with his two young sons. They had been casting when we had started to cross the bridge when all of a sudden he caught a fish. The young boys were delighted with their Dad’s catch and it was quite a catch at that. Normally, the biggest fish I’d see were six inches or less and this was clearly a foot and a half or so long. We stopped at the bridge and I talked to Dear Son about what was happening. I turned his wheelchair towards the men so he could get a good view. It’s really hard to get him to focus on things so far away and although they were only twenty feet down or so, it’s a lot for him to grasp. The man heard us talking, saw Dear Son and held the fish up for him to see. I couldn’t particularly tell if Dear Son really got it or not and soon we were on our way. We finished the trail and turned around to come back when we crossed the bridge again. The men were gone however Dear Son threw his leg out of the wheelchair indicating he wanted to stop and watch them fish. I told them the “men” had gone home and there was nothing to watch. We finished our walk and went home.
So this weekend we walked again and got to the bridge. As we approached the bridge, I talked to Dear Son about what I saw ahead. I told them there were three “men” fishing. We call all male persons “men” now that he is a teenager and he seems to take special pride in knowing that he’s a man. As we got closer, I noticed they were teenagers, about his age. I told Dear Son that and he got rather excited. As we approached the bridge, he started yelling out to get their attention. I stopped on the bridge to talk to them and see if they caught anything. I told them the story of the man who had caught the big fish just weeks before. I doubt they cared much and the only reason I stopped was because Dear Son wanted to stop there. He wanted to go fish with the “men.” Teenagers his age though don’t have much interest in boys like him and it’s sad sometimes when just a little conversation would go a long way.
I thought about the bridge and how much it would mean for Dear Son to go fishing with them, to do a little male bonding. The path to the fishing hole was steep and loaded with giant boulders. I could understand how the boys would like it. It was as rugged as you could get, at least in suburbia. As much as I could see, there’d be no way to get a wheelchair down there, no matter how much you’d like to.
I thought about the boys fishing some more. I thought about the fathers teaching their sons to fish and the boys remembering the good times fishing and catching the “big” one. I thought about how the young boys would go home and tell their mother about the big fish that Dad caught. And then I thought about Dear Son. He’d never learn to fish and even if he went fishing, he couldn’t hold the rod and couldn’t catch a fish. Sometimes, though, it’s not about the fishing or even the catching that’s important. It’s about being present in the moment. And on that day, he was in the moment, and loving every minute.
Sunday, October 07, 2007
New Links!
I’d like to welcome a few new blogs, some of which are new and some of which are new to me.
The first is Poppy Q, a british shorthair cat, who has her own blog and she’s not even one year old. Talk about an overachiever! She is one cool kitty and you have to check her out. Not only is she beautiful, but she has a pretty good purrsonality for a blogger. Luckily, her mum did not declaw her so she can type. You can link to her home page here or just skip to some of her adventures. Here are some samples here and here. Her birthday is October 14th so I am certain that will be a big day as it will be her first birthday party.
The first is Poppy Q, a british shorthair cat, who has her own blog and she’s not even one year old. Talk about an overachiever! She is one cool kitty and you have to check her out. Not only is she beautiful, but she has a pretty good purrsonality for a blogger. Luckily, her mum did not declaw her so she can type. You can link to her home page here or just skip to some of her adventures. Here are some samples here and here. Her birthday is October 14th so I am certain that will be a big day as it will be her first birthday party.
I am wondering though if she’d like to meet my cat. His name is Wiggles. He’s six years old and although he’s older, I don’t think five years is much of a difference. He’s really handsome although vertically challenged, being a Munchkin. He’s just a bit taller than the baseboards, thank you.
Next is an Occupational Therapy blog called, “Occupational Therapy Students Belong.” Karen is a 24 year old first year Master of Occupational Therapy student who chronicles her journey.
Mom of Thomas is a mom who has started a new blog detailing her life with her four year old son who has cerebral palsy.
Rudy is a young man with cerebral palsy and is in a wheelchair. He has a blog called, “Disability Resource Directory.” He had asked me to link to his blog several times and I am finally getting around to adding my links!
And finally, one of my new favorite blogs, “Zen Habits.” The first time I linked to this blog, I was there for hours. This blog has a different topic for each day of the week. Monday is my favorite day because it is, "Productivity and Organization" day. Tuesday is Finance and Family, Wednesday is Simplicity (another favorite of mine), Thursday is Happiness and Friday is Health. Be sure to check out past links since there is a lot of good information out there.
Saturday, October 06, 2007
Full Circle
Sometimes, I get a little depressed reading blogs. It was kind of fascinating in the beginning because most of the blogs out there, were physician blogs, at least when I started. I was the only special needs blog, at least in the group. Sure, there were patients with chronic illnesses but I was the only one with a special needs child. In the early days, I’d submit a post every Tuesday to the Grand Rounds, and I always kind of felt like the odd man out, like where should we put Dream Mom this week, however my numbers always grew, so I figured I was doing something right.
The problem isn’t with the blogs really. I like reading the pediatric ones and I especially like seeing the kids grow up and do new things. It’s nice to see how some things have changed since Dear Son was small and on the other hand, a little depressing to see how much hasn’t changed and that parents are still trying to find answers to the same questions I had fifteen years ago.
For a while, when I read the blogs, it was a kind of relief, like, “Wow, I am glad those days are over.” But I think that would be expected by any mother my age looking at other new moms. I can also remember thinking about how trying those early years were, at least for me, always wondering if I was doing the right thing or enough of the “right” thing so that Dear Son could be all he could be. I was so afraid of the “what if's” as in, “What if he doesn’t walk?”, as if that would be the end of the world. My thinking on that day was how nice it was that I was beyond that now, and that Dear Son is who he is, and it doesn’t matter what he can or can not do because we have both grown up together. He is a charming, delightful teenager and his disabilities don’t seem to matter in terms of who he is but rather, it’s more wishful thinking on my part, that I wished he could do things, to make his life easier and I guess so he’d be happier. I have no idea if he would be happier but I would be being able to do things for yourself would be nice and not have your Mom doing these things would be even better.
But this week I was reading the blogs and it hit me. Dear Son is never going to do anything else, meaning, there isn’t anything to look forward to anymore. I mean really, his days of walking are over. His days of rolling over are pretty much done. His days of standing are over. His days of eating are over. As the other mothers are anxiously awaiting for the days their special needs sons and daughters are going to do something, well, what am I waiting for?
The last few times Dear Son has been in the hospital, I am visited on the first day of every admission by one of the general pediatric attending physicians. It’s usually at the end of the day and when I least expect it. They’ll come into the room and find a seat on the couch and I know “the conversation” is coming. It sucks. The conversation they have with me know goes something like this, “We have read Dear Son’s history and blah, blah, blah and we want to know how you are handling this situation.” What they really mean is, “Where are you now that you know your kid is never getting any better.” God, I hate this conversation. I look them in the eye and tell them very matter of fact that, “It is what it is. I love my Dear Son and want him to be happy. We live every day to the fullest that we can and when the time comes that he is gone, I will know that I have done everything I can to make sure he had a good life.” I elaborate a little bit in there but I try to just be honest and direct.
But I think about that now and I wonder if it’s really enough. When Dear Son was very small, I used to think about him and the fact that he never hit any milestones and I had nothing to write in that baby book. I wrote the post, “Don’t Hate Me Because I am Beautiful” because I described where I was at that very time when he could do absolutely nothing. Back then, I looked at him and I saw that he was beautiful and that’s what I held on to.
The problem isn’t with the blogs really. I like reading the pediatric ones and I especially like seeing the kids grow up and do new things. It’s nice to see how some things have changed since Dear Son was small and on the other hand, a little depressing to see how much hasn’t changed and that parents are still trying to find answers to the same questions I had fifteen years ago.
For a while, when I read the blogs, it was a kind of relief, like, “Wow, I am glad those days are over.” But I think that would be expected by any mother my age looking at other new moms. I can also remember thinking about how trying those early years were, at least for me, always wondering if I was doing the right thing or enough of the “right” thing so that Dear Son could be all he could be. I was so afraid of the “what if's” as in, “What if he doesn’t walk?”, as if that would be the end of the world. My thinking on that day was how nice it was that I was beyond that now, and that Dear Son is who he is, and it doesn’t matter what he can or can not do because we have both grown up together. He is a charming, delightful teenager and his disabilities don’t seem to matter in terms of who he is but rather, it’s more wishful thinking on my part, that I wished he could do things, to make his life easier and I guess so he’d be happier. I have no idea if he would be happier but I would be being able to do things for yourself would be nice and not have your Mom doing these things would be even better.
But this week I was reading the blogs and it hit me. Dear Son is never going to do anything else, meaning, there isn’t anything to look forward to anymore. I mean really, his days of walking are over. His days of rolling over are pretty much done. His days of standing are over. His days of eating are over. As the other mothers are anxiously awaiting for the days their special needs sons and daughters are going to do something, well, what am I waiting for?
The last few times Dear Son has been in the hospital, I am visited on the first day of every admission by one of the general pediatric attending physicians. It’s usually at the end of the day and when I least expect it. They’ll come into the room and find a seat on the couch and I know “the conversation” is coming. It sucks. The conversation they have with me know goes something like this, “We have read Dear Son’s history and blah, blah, blah and we want to know how you are handling this situation.” What they really mean is, “Where are you now that you know your kid is never getting any better.” God, I hate this conversation. I look them in the eye and tell them very matter of fact that, “It is what it is. I love my Dear Son and want him to be happy. We live every day to the fullest that we can and when the time comes that he is gone, I will know that I have done everything I can to make sure he had a good life.” I elaborate a little bit in there but I try to just be honest and direct.
But I think about that now and I wonder if it’s really enough. When Dear Son was very small, I used to think about him and the fact that he never hit any milestones and I had nothing to write in that baby book. I wrote the post, “Don’t Hate Me Because I am Beautiful” because I described where I was at that very time when he could do absolutely nothing. Back then, I looked at him and I saw that he was beautiful and that’s what I held on to.
And now, fifteen years later, we have come full circle. We are back to the beginning and I am asking myself the same question, “What do I have?” I thought about it a lot these last few days. I don’t know what I have but maybe, I need to just love him for who he is, not what he didn’t become. I guess in the end, none of that really matters, or maybe it never did.
Wednesday, October 03, 2007
A Day in the Life
It was only five forty five a.m. when I went in Dear Son’s room and found him on the floor, totally under the bed with only his legs visible from where I was standing. It was not even ten minutes earlier when I had turned on the television for him and everything was just fine. He’s an early bird, often getting up very early in the morning and television is sort of a last resort in terms of keeping him quiet. Six a.m. is the time when I have to be up so he’ll make it on the bus by 7 a.m.
I wondered how on earth he managed to fall out of the hospital bed and if he was hurt. The hospital bed has a side rail for the top half of the bed, which I always have up when he’s in bed. I wondered how I would get him out from under the bed without injuring my back. I could not use the sling or Hoyer lift since I couldn’t begin to get the sling under him in that position. Not only that, I wouldn’t be able to bend down to even do it. I wondered how many more things I would have to endure this month, in the first four weeks after back surgery. My mind recalled the events: back surgery and going home the same day, wow, that was hard. Next, having ten days to recover before going back to work and then on day thirteen day, getting Dear Son back home from the Respite House. That first day home was very hard since I couldn’t bend over and the slightest bend, such as giving him his medicine, was excruciating. I figured it I could get through that, I could send him to school the next day and at least, school would care for him during the day and I would only have to manage things at home for the remainder of the day. But it didn’t happen that way. He got sick the next day at school and had to stay home for the next four days with bronchitis and an upper respiratory infection which meant I had to care for him twenty four hours a day, less than three weeks after back surgery. And now this. How on earth would I get him off the floor?
Dear Son is very quiet when things are wrong or he is in trouble. He never says a word. While most kids might yell or cry, he does none of it. He sits or lies there extremely quiet, until you notice something is wrong. His hands/arms don’t work, so he doesn’t do things quite like you or I. If he falls down, he just falls down, right on his head, since his arms and hands don’t break the fall, as he has no reflexes. So this was very scary, seeing him lying under the bed.
I talked to him and then told him to hang on while I called his Dad. Dear Son’s Dad works in the area and is around fifteen minutes away. He works three days a week, twelve hour shifts and thankfully, this was one of his days. It was now six a.m. when I called him and he had just arrived in the parking lot. I was thankful he was always early to work, especially on this day. He agreed to come over to get him off the floor.
While I was waiting for him, I checked Dear Son out. I have a little game I play with him when something happens. I basically take my hand and tap on all his body parts and ask him if everything is o.k. He usually smiles so I know things are fine but if he were hurt, he’d probably flinch so I have to watch his face.
Had Dad not been available, I’d have to call 911 to get him out from under the bed. I surveyed the bed to see how this might have happened. The head of the bed was up slightly, to assist him with his reflux. That causes him to slip down to the middle of the bed and he had gone to the bathroom and his diaper had leaked thus getting the pads on his bed wet and with his bodyweight and any movement, was like a giant slip and slide and he sailed off the bed. That’s just my guess. I honestly didn’t hear a thing which was unusual because our apartment is only 750 square feet.
Once he was off to school, I finished my morning routine and was off to work. That evening, the seizures would start and it would be the start of several days of virtually no sleep.
I give meds five times a day. I give meds at 6:30 a.m., noon, five p.m., eight p.m. and midnight. Then I go to bed somewhere between midnight and one in the morning. On this particular night, I went to bed at midnight only to wake up at one a.m. with Dear Son yelling out. Living in an apartment, I can’t have him make any noise so I jump up right away to see what’s wrong. At fifteen, his voice is very deep and not only that, extremely loud. He doesn’t vocalize much during the day, but at night, he’ll really yell out. There is nothing worse than being asleep for one hour and then having to get up. It’s long enough to just get to sleep and to be sleeping well, when it’s time to get up. I jumped up and checked him out. Sometimes, just turning him over does the trick. He can’t roll over so I need to roll him over and lift up on his hips to get him totally on his side. If he’s on his back at all, not only will he choke on his saliva, but he gets very agitated and almost seizure like, so it’s not an option. Getting up at 1 a.m. was just the beginning. I was up at 1:30, 2:15 a.m. and then somewhere around 3 and then at least another twenty times from three to five a.m. Anytime he wakes up, you have a series of scenarios that play out in your head. Basically, you want to get back in bed as soon as possible. You hope you just have to roll him over but sometimes, he needs a diaper change. If the diaper is wet, you hope it hasn’t leaked. If it has, then that means a shirt change, diaper change and changing of the pads. The pads aren’t bad unless he leaks through them all and then you have to change all of the sheets in the middle of the night. The worse case scenario is the dreaded bowel movement in the middle of the nights since this requires the most work.
I get up the next day and manage to get quite a bit done. I decide to try taking him for our first walk since my surgery. I push him in the wheelchair and we walk over two miles around the trail on the golf course. Dear Son is almost 160 pounds so pushing him plus a 100 pound wheelchair is getting more difficult. So far, so good, and no back pain. The day goes on and I put him to bed that night only to repeat the same scenario of him getting agitated, having seizures and then being up some fifty times at night. After four sleepless nights I call the neurologist.
Dear Son has intractable seizures which means they aren’t controlled by medicine. He also has a Vagus Nerve Stimulator implanted. The VNS is great however we still experience episodes like this where he has periods where he’s extremely agitated, some of which go on into seizures.
I often worry about Dear Son during times like this. I wonder what exactly is going on in his head and wonder how uncomfortable he must be. It’s also extremely hard caring for him, especially with little or no sleep. In the past four nights, I haven’t slept more than two hours in a row without interruption. It makes it very difficult to go to work and to exercise. I started exercising again and took Dear Son out walking both Saturday and Sunday, forty minutes each time. I also managed to exercise on the treadmill yesterday and today plus work every day this week. This week has been hard too, because he’s getting so big for me. It takes a lot of energy to roll him over, to get him dressed and to transition him. And nothing is particularly easy.
I wish now that I had some nursing care on the insurance plan. I don’t have any but it’s getting pretty hard now that he is so physically demanding. And that’s what makes me wonder about Brittany Spears and other celebrities.
They have it all. They have celebrity, they have money, they have nannies and they have normal kids. It doesn’t get much easier than that. They are blessed. And yet, they don’t have it together.
I looked over at Dear Son, now sitting and smiling in his rocker and I see how happy he is. I look him in the eye and he stares at me and smiles right back. I then talk to him and tell him how cool it would if we could switch places for a day and he could talk and I would listen. I go through all of the things he might say and he begins to smile and then to really laugh as I describe for him, what that day might be like. We laugh together.
Our life is good. Yes, our life is good.
I wondered how on earth he managed to fall out of the hospital bed and if he was hurt. The hospital bed has a side rail for the top half of the bed, which I always have up when he’s in bed. I wondered how I would get him out from under the bed without injuring my back. I could not use the sling or Hoyer lift since I couldn’t begin to get the sling under him in that position. Not only that, I wouldn’t be able to bend down to even do it. I wondered how many more things I would have to endure this month, in the first four weeks after back surgery. My mind recalled the events: back surgery and going home the same day, wow, that was hard. Next, having ten days to recover before going back to work and then on day thirteen day, getting Dear Son back home from the Respite House. That first day home was very hard since I couldn’t bend over and the slightest bend, such as giving him his medicine, was excruciating. I figured it I could get through that, I could send him to school the next day and at least, school would care for him during the day and I would only have to manage things at home for the remainder of the day. But it didn’t happen that way. He got sick the next day at school and had to stay home for the next four days with bronchitis and an upper respiratory infection which meant I had to care for him twenty four hours a day, less than three weeks after back surgery. And now this. How on earth would I get him off the floor?
Dear Son is very quiet when things are wrong or he is in trouble. He never says a word. While most kids might yell or cry, he does none of it. He sits or lies there extremely quiet, until you notice something is wrong. His hands/arms don’t work, so he doesn’t do things quite like you or I. If he falls down, he just falls down, right on his head, since his arms and hands don’t break the fall, as he has no reflexes. So this was very scary, seeing him lying under the bed.
I talked to him and then told him to hang on while I called his Dad. Dear Son’s Dad works in the area and is around fifteen minutes away. He works three days a week, twelve hour shifts and thankfully, this was one of his days. It was now six a.m. when I called him and he had just arrived in the parking lot. I was thankful he was always early to work, especially on this day. He agreed to come over to get him off the floor.
While I was waiting for him, I checked Dear Son out. I have a little game I play with him when something happens. I basically take my hand and tap on all his body parts and ask him if everything is o.k. He usually smiles so I know things are fine but if he were hurt, he’d probably flinch so I have to watch his face.
Had Dad not been available, I’d have to call 911 to get him out from under the bed. I surveyed the bed to see how this might have happened. The head of the bed was up slightly, to assist him with his reflux. That causes him to slip down to the middle of the bed and he had gone to the bathroom and his diaper had leaked thus getting the pads on his bed wet and with his bodyweight and any movement, was like a giant slip and slide and he sailed off the bed. That’s just my guess. I honestly didn’t hear a thing which was unusual because our apartment is only 750 square feet.
Once he was off to school, I finished my morning routine and was off to work. That evening, the seizures would start and it would be the start of several days of virtually no sleep.
I give meds five times a day. I give meds at 6:30 a.m., noon, five p.m., eight p.m. and midnight. Then I go to bed somewhere between midnight and one in the morning. On this particular night, I went to bed at midnight only to wake up at one a.m. with Dear Son yelling out. Living in an apartment, I can’t have him make any noise so I jump up right away to see what’s wrong. At fifteen, his voice is very deep and not only that, extremely loud. He doesn’t vocalize much during the day, but at night, he’ll really yell out. There is nothing worse than being asleep for one hour and then having to get up. It’s long enough to just get to sleep and to be sleeping well, when it’s time to get up. I jumped up and checked him out. Sometimes, just turning him over does the trick. He can’t roll over so I need to roll him over and lift up on his hips to get him totally on his side. If he’s on his back at all, not only will he choke on his saliva, but he gets very agitated and almost seizure like, so it’s not an option. Getting up at 1 a.m. was just the beginning. I was up at 1:30, 2:15 a.m. and then somewhere around 3 and then at least another twenty times from three to five a.m. Anytime he wakes up, you have a series of scenarios that play out in your head. Basically, you want to get back in bed as soon as possible. You hope you just have to roll him over but sometimes, he needs a diaper change. If the diaper is wet, you hope it hasn’t leaked. If it has, then that means a shirt change, diaper change and changing of the pads. The pads aren’t bad unless he leaks through them all and then you have to change all of the sheets in the middle of the night. The worse case scenario is the dreaded bowel movement in the middle of the nights since this requires the most work.
I get up the next day and manage to get quite a bit done. I decide to try taking him for our first walk since my surgery. I push him in the wheelchair and we walk over two miles around the trail on the golf course. Dear Son is almost 160 pounds so pushing him plus a 100 pound wheelchair is getting more difficult. So far, so good, and no back pain. The day goes on and I put him to bed that night only to repeat the same scenario of him getting agitated, having seizures and then being up some fifty times at night. After four sleepless nights I call the neurologist.
Dear Son has intractable seizures which means they aren’t controlled by medicine. He also has a Vagus Nerve Stimulator implanted. The VNS is great however we still experience episodes like this where he has periods where he’s extremely agitated, some of which go on into seizures.
I often worry about Dear Son during times like this. I wonder what exactly is going on in his head and wonder how uncomfortable he must be. It’s also extremely hard caring for him, especially with little or no sleep. In the past four nights, I haven’t slept more than two hours in a row without interruption. It makes it very difficult to go to work and to exercise. I started exercising again and took Dear Son out walking both Saturday and Sunday, forty minutes each time. I also managed to exercise on the treadmill yesterday and today plus work every day this week. This week has been hard too, because he’s getting so big for me. It takes a lot of energy to roll him over, to get him dressed and to transition him. And nothing is particularly easy.
I wish now that I had some nursing care on the insurance plan. I don’t have any but it’s getting pretty hard now that he is so physically demanding. And that’s what makes me wonder about Brittany Spears and other celebrities.
They have it all. They have celebrity, they have money, they have nannies and they have normal kids. It doesn’t get much easier than that. They are blessed. And yet, they don’t have it together.
I looked over at Dear Son, now sitting and smiling in his rocker and I see how happy he is. I look him in the eye and he stares at me and smiles right back. I then talk to him and tell him how cool it would if we could switch places for a day and he could talk and I would listen. I go through all of the things he might say and he begins to smile and then to really laugh as I describe for him, what that day might be like. We laugh together.
Our life is good. Yes, our life is good.
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