When Sam was young, people regularly gave me a copy of "Welcome to Holland" - an essay by Emily Perl Kingsley on what it is like to give birth to a child with disabilities. It is a wonderful essay and you can find it here:
Welcome to Holland
Someone also gave me a book written about the same time called "Hope for the Families" by Robert Perske and illustrated by Martha Perske. 30 years later, it's still in print and available at Amazon.com. The illustrations are beautiful. One of the very first things he says is "Accept the fact that the 'child of your dreams' never was and never would have been. All parents must acknowledge this sooner or later. Your problem: You must do it sooner."
Sam wasn't what I was expecting, but he was pretty terrific. No one gets the child they were expecting, life just doesn't work like that. These two thoughts helped me come to terms with the reality of being Sam's Mom and got me started on our wonderful 33 years together.
Chapter One of my life is the 30 years before Sam was born. Chapter Two is the almost 33 years we spent together. Now, if my mother is anything to judge by, I may have a Chapter Three! She's 86 and beginning to consider slowing down.
My plan, once I got used to the idea of being Sam's Mom, was that he would die before me but close to the end of my life. Then I wouldn't have to wait very long to join him in Heaven.
Once again, life has thrown me a curve ball.
This is rather a shock. I knew in my head that he was dying, but I really didn't believe it in my heart. In the last couple of years, I did try to look ahead and make a plan for surviving him, but I was too busy taking care of him to really think ahead much and it felt like giving up. And, honestly, I can't imagine a better way to spend my days than being Sam's Mom.
Only suddenly, unexpectedly, here I am, Sam-less and healthy. Four months and counting into my new life and I'm ready to look around and figure out what to do with my days until I see my boy again.
It's not what I was expecting, but it's got some rather intriguing possibilities.
No one gets the life they plan on. Life just doesn't work like that.
Musings From a Life Transformed by Unconditional Love
Showing posts with label parenting disabled child. Show all posts
Showing posts with label parenting disabled child. Show all posts
Wednesday, March 25, 2015
Tuesday, August 21, 2012
Dark Days
In the beginning (30+ Years ago), life was a continuous nightmare. I was in denial - or still had hope - it's hard to tell the difference even now. I thought Sam was just off to a bad start and some doctor would fix him. Soon.
Cynthia Stack, brilliant clinician with absolutely no compassion, put an end to that phase. She examined him for a couple of minutes and pronounced, "Profoundly retarded, profoundly disabled and probably a dwarf," and walked out of the room. Technically, he's a midget not a dwarf.
Another doctor said, "I believe we should do everything we can for children like this until they are 3 years old. And then, for the sake of the family, if they aren't any better, we put them in an institution." At the time I thought, "No way." And we didn't, but looking back I see his point. I don't think I agree with it, but I understand what he meant. Making the decision to keep Sam didn't feel very important at the time, it just seemed like the obvious choice. But it was one of those Doctor Who universe-splitting moments that change the future forever. We surrendered all hope of being "normal". It transformed our family, it made the three of us (Charley, Ben and me) into who we are today. I don't know if that's good or bad, it's just true.
That decision was the end of a long process of acceptance. He wasn't going to get better. He wasn't going to grow up. He wasn't the little girl I thought I was carrying when I was pregnant, he was Sam.
Fast forward 30 mostly wonderful years.
30 years in which I have passionately fought for quality of life for my baby.
30 years in which I have been slowly transformed by the combination of intense joy and overwhelming sadness that being Sam's Mom involves.
30 years of sleep deprivation, worry and learning words like bilateral choroidial coloboma and ataxic cerebral palsy and central sleep apnea and cystic fibrosis-like bronchiecstasis and compensated acidosis.
Sam is the author of my world view, my faith, my politics, my personality. When people comment on my wisdom or creativity and wonder where it comes from, I point to Sam. Maybe these things were latent within me and Sam brought them out. Every mother of a child with disabilities is different, every child with disabilities is different. But the combination of Sam and me has been profound and deep.
And now it's drawing to a close. We're losing him. I've always said that I hope I live longer than him because he would be so lost and helpless without me. Now I am facing the fact that he is declining and will almost certainly die before me and I will be so lost and helpless without him.
I'm still fighting for his life, but I am coming to a new awareness of my imminent defeat. No one knows how much longer we have together, but it's getting worse and I'm scared.
Cynthia Stack, brilliant clinician with absolutely no compassion, put an end to that phase. She examined him for a couple of minutes and pronounced, "Profoundly retarded, profoundly disabled and probably a dwarf," and walked out of the room. Technically, he's a midget not a dwarf.
Another doctor said, "I believe we should do everything we can for children like this until they are 3 years old. And then, for the sake of the family, if they aren't any better, we put them in an institution." At the time I thought, "No way." And we didn't, but looking back I see his point. I don't think I agree with it, but I understand what he meant. Making the decision to keep Sam didn't feel very important at the time, it just seemed like the obvious choice. But it was one of those Doctor Who universe-splitting moments that change the future forever. We surrendered all hope of being "normal". It transformed our family, it made the three of us (Charley, Ben and me) into who we are today. I don't know if that's good or bad, it's just true.
That decision was the end of a long process of acceptance. He wasn't going to get better. He wasn't going to grow up. He wasn't the little girl I thought I was carrying when I was pregnant, he was Sam.
Fast forward 30 mostly wonderful years.
30 years in which I have passionately fought for quality of life for my baby.
30 years in which I have been slowly transformed by the combination of intense joy and overwhelming sadness that being Sam's Mom involves.
30 years of sleep deprivation, worry and learning words like bilateral choroidial coloboma and ataxic cerebral palsy and central sleep apnea and cystic fibrosis-like bronchiecstasis and compensated acidosis.
Sam is the author of my world view, my faith, my politics, my personality. When people comment on my wisdom or creativity and wonder where it comes from, I point to Sam. Maybe these things were latent within me and Sam brought them out. Every mother of a child with disabilities is different, every child with disabilities is different. But the combination of Sam and me has been profound and deep.
And now it's drawing to a close. We're losing him. I've always said that I hope I live longer than him because he would be so lost and helpless without me. Now I am facing the fact that he is declining and will almost certainly die before me and I will be so lost and helpless without him.
I'm still fighting for his life, but I am coming to a new awareness of my imminent defeat. No one knows how much longer we have together, but it's getting worse and I'm scared.
Thursday, May 03, 2012
Confidence Booster
I was a bit alarmed when they sent us home from the hospital after only 8 days. They were talking about 3 weeks. But they said that I can do the same or better for him at home. Are they right????
Well, I can "check his vitals" just like they can. No big deal. I know better than they do what normal for him is. I can give him meds and oxygen just like they can now that he's off IV antibiotics. I can feed him. The biggest difference is: I'm one, they are many.
And the hospital bed. That thing requires a college level course in mechanics to operate, but it's way cool. It can go into just about any possible position. It's better than a carnival ride! And it puts Sam in the perfect position for CPT (Chest Physical Therapy). He needs to be in the right position so that gravity helps his weak muscles get the stuff out. And you can raise it or lower it to save the Respiratory Therapist's back. Cool.
At home, we have an Ikea bed. VERY low to the floor so Sam can get in and out without falling. (Hospital bed also has crib rails) But this morning, I discovered that all you really need for proper drainage is a portable DVD player. You put Curious George on the floor, press play and Sam scampers over to the edge of the bed, hangs his head over and thrusts his butt in the air and voila! he's in the perfect position for postural drainage. I pull up a chair and start whacking him on the back. He giggles.
Maybe we are better off at home. I can sleep without fear that six doctors in white coats will hear me snore and watch me drool. That's gotta be good.
Well, I can "check his vitals" just like they can. No big deal. I know better than they do what normal for him is. I can give him meds and oxygen just like they can now that he's off IV antibiotics. I can feed him. The biggest difference is: I'm one, they are many.
And the hospital bed. That thing requires a college level course in mechanics to operate, but it's way cool. It can go into just about any possible position. It's better than a carnival ride! And it puts Sam in the perfect position for CPT (Chest Physical Therapy). He needs to be in the right position so that gravity helps his weak muscles get the stuff out. And you can raise it or lower it to save the Respiratory Therapist's back. Cool.
At home, we have an Ikea bed. VERY low to the floor so Sam can get in and out without falling. (Hospital bed also has crib rails) But this morning, I discovered that all you really need for proper drainage is a portable DVD player. You put Curious George on the floor, press play and Sam scampers over to the edge of the bed, hangs his head over and thrusts his butt in the air and voila! he's in the perfect position for postural drainage. I pull up a chair and start whacking him on the back. He giggles.
Tuesday, March 22, 2011
Lent
Charley's car needs some rather costly repairs and it's about 15 years old. So before we fix it, we're trying to see how it would be to have only one car. Cheaper for us, better for the environment and, when Sam doesn't have pneumonia, we'll benefit from doing our errands by foot in the neighborhood. On nice days, Charley can take public transportation or ride his bike and I can have the car if I need it. Now, if I can remember to make all doctor appointments on nice days...
This means yet another very large change (I refuse to say sacrifice) on my part. I am a bird who has volunteered to have her wings clipped! So for Lent, I guess I'm giving up one more freedom. This time it is partly to benefit the planet (and the pocket book). For the last year or so, I've been slowly surrendering all my freedom to Sam's health needs. We now let him sleep whenever he wants which means he no longer goes to school and he is more than ever my constant companion. His health is always precarious, so I am his devoted slave and nurse. The lung doctor says that if it weren't for my care, Sam's story would have ended long ago. When he smiles, I can't regret a single moment and I choose this life all over again.
But I miss the world outside my living room window. Especially now that it's spring.
Second Tuesday of Lent. Readings for today are Isaiah 1:10, 16-20 Part of which goes:
Wash yourselves clean! Put away your misdeeds from before my eyes; cease doing evil; learn to do good. Make justice your aim: redress the wronged, hear the orphan's plea, defend the widow.
And Ezekiel 18:31
Cast away from you all the crimes you have committed, says the Lord, and make for yourselves a new heart and a new spirit.
And Matthew 23: 1-12 which includes:
The greatest among you must be your servant. Whoever exalts himself will be humbled; but whoever humbles himself will be exalted.
These verses encapsulate a large part of my personal understanding of what it means to live as a person of faith. Seek justice, care for the disadvantaged, try to do what is right, maintain a realistic picture of yourself and your place in the world (humility) and no matter how badly you messed up yesterday, remember you can always start over again every morning.
How do I do that as a stay at home - stuck at home - mother of a young man with profound disabilities?
Well, step one: stop feeling sorry for myself.
Step two: remember how much the world is inside my living room. Internet, tv, phones; I am in touch with the world in countless miraculous ways.
Step three: gratitude for my many blessings. I actually do get to choose how I will live my life. Every morning. I don't get much choice about what happens to me, but I do get a lot of choice about how I will respond. And a lot of beautiful things happen to me every day, every moment, every breath I take - and every breath Sam breathes.
Step four: don't be stupid or naive. I'm stuck at home, I don't have my head stuck in the sand. I'm not blind. I can take action and reach out. Actually, I do a lot of reaching out. These verses and this personal credo are not new to me. I've been passionate about justice for most of my life. I may be finally forced to accept that "charity begins at home" and forced to put most of my energy into self care and Sam care, but I can still impact the larger world in small ways. "Think globally, act locally" takes on a deeper meaning when you don't leave the house more than two or three times a month!
In fact, if I had been able to construct the events of my life and not just my reaction to them, I probably would have become a bright star that burnt out long ago. I would have thrown myself into some form of activism aimed at saving the world without counting the personal cost. Being a wife and mother, being Sam's mother, has forced me to slow down, recognize my impotence and that I too have needs. I am responsible for such a very little and incredibly precious and fragile fragment of the universe: Me and my family and a couple of birds. At the same time I am part of the human race, and a resident of this planet. Caring for myself and my family must take that into account. My focus remains on the small world inside my living room and my awareness includes the larger world beyond it. I buy plant based laundry detergent and sponsor children in Africa and welcome whomever comes to my door and sign petitions to end DOMA and donate to relief for tsunami victims. But mostly I check Sam's oxygen levels and pay bills and fix meals.
Maybe all the events of my life are carefully aimed at bringing this co-dependent, Eneagram 2, earth mother with PTSD toward balance and perhaps someday enlightenment.
Friday, March 18, 2011
Oh Darn
Sam has aspiration pneumonia again and worse than it's been for several years. I've got him on oxygen most of the time and he's taking antibiotics. The doctor said to wait 48 hours and if he didn't turn around, I'd have to admit him for IV antibiotics. The 48 hours is almost up and I think he's improved - slightly. I really want to make the right decision here. Going to the hospital might be an important step to saving his life. We don't want to increase the already extensive scarring of his lungs. There are so many parts of his lungs that no longer work.
On the other hand, we both hate going to the hospital. He can't move because of the iv in his arm and I have to sleep on a very cold, hard window seat! A smaller consideration is the fact that the State of Illinois will not pay me for the days he is in hospital because they think of it as time I don't work. Hah! This is a small consideration because they only pay me for 4 hours a day anyway!
It's Lent. You would think this would give me time to reflect and be mindful of my life. But frankly, I'm too sleepy. MY body has never really accepted Sam's habit of sleeping from 4 am to 11 am. I still like to sleep from about 10 pm to 6 am. So when he's sick I only get a couple of hours sleep. Then we both nap in the afternoon on the couch. But the rest of the day I'm giving him medicine and wandering around the house like a zombie and groggily trying to think of all the things that need doing.
Oh and watching tsunami videos.
I heard from my friends in Japan and they are okay but in shock. They are still experiencing several after shocks daily. Tsunami and nuclear explosions are the terror at the core of every Japanese soul and they are suddenly facing both at once. My heart weeps for them.
Want to do something? You can donate to people who seem to be doing a good job with the relief efforts:
American Red Cross
Salvation Army
Crash Japan
On the other hand, we both hate going to the hospital. He can't move because of the iv in his arm and I have to sleep on a very cold, hard window seat! A smaller consideration is the fact that the State of Illinois will not pay me for the days he is in hospital because they think of it as time I don't work. Hah! This is a small consideration because they only pay me for 4 hours a day anyway!
It's Lent. You would think this would give me time to reflect and be mindful of my life. But frankly, I'm too sleepy. MY body has never really accepted Sam's habit of sleeping from 4 am to 11 am. I still like to sleep from about 10 pm to 6 am. So when he's sick I only get a couple of hours sleep. Then we both nap in the afternoon on the couch. But the rest of the day I'm giving him medicine and wandering around the house like a zombie and groggily trying to think of all the things that need doing.
Oh and watching tsunami videos.
I heard from my friends in Japan and they are okay but in shock. They are still experiencing several after shocks daily. Tsunami and nuclear explosions are the terror at the core of every Japanese soul and they are suddenly facing both at once. My heart weeps for them.
Want to do something? You can donate to people who seem to be doing a good job with the relief efforts:
American Red Cross
Salvation Army
Crash Japan
Wednesday, March 02, 2011
Sam's Condition (just the bad stuff)
I had to write this for a social worker. It was hard. So I thought I'd post it, because it felt like a challenge like this should be memorialized - or something. Either I'm just feeling sorry for myself or else I'm really proud of my ability to spell arcane medical words.
Sam Forsberg is a 29 year old boy with the mental capacity of about an 18 month old. He is about 4 1/2 feet tall and, on a good day, weighs 80 pounds. If he goes too much below 75 pounds he gets sick from being too thin. He has aphasia (which means he can't figure out how to talk) and dysphasia (difficulty swallowing). He also has a very high arched palate which may be part of his swallowing difficulties. He has bi-lateral choroidal coloboma (which means a hole in the back of both of his eyes) and strabismus and nystagmus (which means his eyes wobble up, down and sideways). The last time we took him to the eye doctor, she said he also has some astigmatism. He has a certain degree of ataxia (which means he shakes or trembles a lot especially when tired.)
All of this is because something went wrong about a month before he was born. Maybe he had a stroke. He was born with brain damage in the back part of his brain. He can't walk because he has damage to his vestibular nerve and so he has very little sense of balance. He isn't very strong, tires easily and has very low muscle tone. He also doesn't have a very good temperature regulator, so I can't take him outside if the weather is too cold or too hot. He has asthma, so I am not supposed to take him outside on "ozone action days".
He can't chew, which means everything he eats must be pureed or mashed. According to the dentist, this means his teeth are MORE likely to decay than if he actually chewed, so I have to be very careful to brush his teeth often. If he swallows something too thin, he chokes and some of it goes into his lungs. If he swallows liquids that are too thick, he chokes and stuff goes up his nose. Sometimes things that he has swallowed half way come back up into his nose and then, we think, go back down into his lungs. He has very extensive nasal polyps because of this nasal regurgitation.
All of his life he has had a lot of congestion. No one is quite sure why. He doesn't seem to have any allergies, although he does have asthma because his lungs are so chronically full. His nose is always running and he often has huge amounts of mucus clogging his nose and throat. He had almost constant ear infections as a child. The muscle that is supposed to help his ears drain is either missing or non-functional because of his high palate. We lost track of how many different ear doctors tried to put tubes in his ears. (I can think of 5 off the top of my head) The tubes never lasted long. But his ear drums have been perforated so many times that he seems to have developed permanent holes in them now, so we don't have as many ear infections. This is good because he is resistant to some of the antibiotics and allergic to others because he's been on them so often. Now we try to avoid using antibiotics as much as possible. He usually gets pneumonia about once a year and we give him antibiotics for that.
About 6 years ago he had a very bad bout of pneumonia and had to be hospitalized. At that time we met Dr. Mutlu. He has been caring for Sam's lungs ever since. He discovered that Sam also has Central Sleep Apnea which causes his Co2 levels to rise. Sam is in compensated respiratory acidosis. This means his body is working overtime to compensate for the extra Co2 in his blood. If the Co2 rises too much, he dies. So bringing down the Co2 has become a central focus of our lives the last 6 years.
We tried for about a year and a half to get him to wear the bi-pap machine, but finally gave up because I wasn't getting any sleep and started to see snakes in the corner of the room! Instead, I keep a close watch on his blood oxygen level with a pulse oximeter. I try to keep it between 87 and 95. If it gets too low, I have an oxygen condenser at home and I can give him oxygen. It never gets too high naturally, but sometimes it can get too high with the oxygen condenser. If it gets too high, the sleep apnea gets worse and his Co2 levels rise.
He has always seemed to sleep best between the hours of about 4 am and 11 am. I used to dress him in his sleep and take him to the car to get him to school or program. He was always late. I would feed him in the car when he woke up. Dr. Mutlu said this should stop. It is vital that Sam sleep whenever he can. When he sleeps deeply, he breathes deeply and this is the best way to bring Co2 levels down. So we let him sleep. He often takes a nap in the afternoon as well. This means that he has been unable to attend Esperanza very often. When we have a very good day, I bring him to visit for a few hours from about noon to when they close at 2:15.
In addition to letting him sleep and preparing all his meals carefully so he won't choke or regurgitate, there are also his breathing treatments. I give him chest PT with a chest vibrator 2 or 3 times a day. This takes 30-45 minutes each time. I also give him a nasal irrigation twice a day and nebulizer 4 times a day with medications prescribed by Dr. Mutlu.
I have three recent examples of how necessary all this is. First: in December my husband had surgery for prostate cancer. He came home with a catheter and was very weak. I spent a great deal of time taking care of him. I skimped on Sam's treatments. Sam got pneumonia. Second: whenever I fail to keep all the food and sleep and treatments in balance, Sam is up all night whimpering. Third: When we went to see Dr. Mutlu on February 22 of this year, Sam's blood gasses were stable! After 6 years of rising blood levels, and all my efforts to slow the rate of rising, we have finally stabilized him! His blood levels are still much higher than normal, but this is a great victory.
So, in summary, a brief list of his many diagnoses would include: profound mental retardation, ataxic cerebral palsy, chronic hypercapnic respiratory failure, bronchiectasis, central sleep apnea, asthma, dysphasia and aphasia. There's probably a several more, but that's all I can think of at the moment. Dr. Mutlu speculates that he has Joubert's Syndrome. His small stature is due to failure to thrive in his first year.
Sam Forsberg is a 29 year old boy with the mental capacity of about an 18 month old. He is about 4 1/2 feet tall and, on a good day, weighs 80 pounds. If he goes too much below 75 pounds he gets sick from being too thin. He has aphasia (which means he can't figure out how to talk) and dysphasia (difficulty swallowing). He also has a very high arched palate which may be part of his swallowing difficulties. He has bi-lateral choroidal coloboma (which means a hole in the back of both of his eyes) and strabismus and nystagmus (which means his eyes wobble up, down and sideways). The last time we took him to the eye doctor, she said he also has some astigmatism. He has a certain degree of ataxia (which means he shakes or trembles a lot especially when tired.)
All of this is because something went wrong about a month before he was born. Maybe he had a stroke. He was born with brain damage in the back part of his brain. He can't walk because he has damage to his vestibular nerve and so he has very little sense of balance. He isn't very strong, tires easily and has very low muscle tone. He also doesn't have a very good temperature regulator, so I can't take him outside if the weather is too cold or too hot. He has asthma, so I am not supposed to take him outside on "ozone action days".
He can't chew, which means everything he eats must be pureed or mashed. According to the dentist, this means his teeth are MORE likely to decay than if he actually chewed, so I have to be very careful to brush his teeth often. If he swallows something too thin, he chokes and some of it goes into his lungs. If he swallows liquids that are too thick, he chokes and stuff goes up his nose. Sometimes things that he has swallowed half way come back up into his nose and then, we think, go back down into his lungs. He has very extensive nasal polyps because of this nasal regurgitation.
All of his life he has had a lot of congestion. No one is quite sure why. He doesn't seem to have any allergies, although he does have asthma because his lungs are so chronically full. His nose is always running and he often has huge amounts of mucus clogging his nose and throat. He had almost constant ear infections as a child. The muscle that is supposed to help his ears drain is either missing or non-functional because of his high palate. We lost track of how many different ear doctors tried to put tubes in his ears. (I can think of 5 off the top of my head) The tubes never lasted long. But his ear drums have been perforated so many times that he seems to have developed permanent holes in them now, so we don't have as many ear infections. This is good because he is resistant to some of the antibiotics and allergic to others because he's been on them so often. Now we try to avoid using antibiotics as much as possible. He usually gets pneumonia about once a year and we give him antibiotics for that.
About 6 years ago he had a very bad bout of pneumonia and had to be hospitalized. At that time we met Dr. Mutlu. He has been caring for Sam's lungs ever since. He discovered that Sam also has Central Sleep Apnea which causes his Co2 levels to rise. Sam is in compensated respiratory acidosis. This means his body is working overtime to compensate for the extra Co2 in his blood. If the Co2 rises too much, he dies. So bringing down the Co2 has become a central focus of our lives the last 6 years.
We tried for about a year and a half to get him to wear the bi-pap machine, but finally gave up because I wasn't getting any sleep and started to see snakes in the corner of the room! Instead, I keep a close watch on his blood oxygen level with a pulse oximeter. I try to keep it between 87 and 95. If it gets too low, I have an oxygen condenser at home and I can give him oxygen. It never gets too high naturally, but sometimes it can get too high with the oxygen condenser. If it gets too high, the sleep apnea gets worse and his Co2 levels rise.
He has always seemed to sleep best between the hours of about 4 am and 11 am. I used to dress him in his sleep and take him to the car to get him to school or program. He was always late. I would feed him in the car when he woke up. Dr. Mutlu said this should stop. It is vital that Sam sleep whenever he can. When he sleeps deeply, he breathes deeply and this is the best way to bring Co2 levels down. So we let him sleep. He often takes a nap in the afternoon as well. This means that he has been unable to attend Esperanza very often. When we have a very good day, I bring him to visit for a few hours from about noon to when they close at 2:15.
In addition to letting him sleep and preparing all his meals carefully so he won't choke or regurgitate, there are also his breathing treatments. I give him chest PT with a chest vibrator 2 or 3 times a day. This takes 30-45 minutes each time. I also give him a nasal irrigation twice a day and nebulizer 4 times a day with medications prescribed by Dr. Mutlu.
I have three recent examples of how necessary all this is. First: in December my husband had surgery for prostate cancer. He came home with a catheter and was very weak. I spent a great deal of time taking care of him. I skimped on Sam's treatments. Sam got pneumonia. Second: whenever I fail to keep all the food and sleep and treatments in balance, Sam is up all night whimpering. Third: When we went to see Dr. Mutlu on February 22 of this year, Sam's blood gasses were stable! After 6 years of rising blood levels, and all my efforts to slow the rate of rising, we have finally stabilized him! His blood levels are still much higher than normal, but this is a great victory.
So, in summary, a brief list of his many diagnoses would include: profound mental retardation, ataxic cerebral palsy, chronic hypercapnic respiratory failure, bronchiectasis, central sleep apnea, asthma, dysphasia and aphasia. There's probably a several more, but that's all I can think of at the moment. Dr. Mutlu speculates that he has Joubert's Syndrome. His small stature is due to failure to thrive in his first year.
Friday, February 18, 2011
Pureed Food Recipies
Sam's a "big boy" and doesn't like to eat baby food. He wants to eat whatever I'm eating. This is a bit of a problem because I like to chew and he can't. He has dyphasia (swallowing problems) on top of that. When he gets too much food in his mouth, or hoards food he can't chew in his palate, it produces an amazing amount of saliva which goes up his nose. When he swallows liquid that's too thick, it clogs his nose and he just about suffocates. We ordered him a milk shake once and I thought we'd lost him. Not going to repeat that experiment. He does like Wendy's Frosty with a spoon. If it's too thin, it comes out his nose when he swallows. Sometimes the food that is just right only goes half way down his throat and a couple of minutes later it comes out his nose. Sigh.
Numerous swallow studies have not really given us a solid picture of what is going on or how much this is related to his ever diminishing lung capacity, but it's a pretty safe bet that something that isn't supposed to be there is getting into his lungs and clogging them up.
So I have to feed him very carefully, but it has to be attractive, nutritious and taste good. Culinary challenge they don't often cover on the food network! One bonus: calories and fat are not an issue with this boy. I'm always trying to keep his weight UP.
Of course calories and fat are a huge issue for his mom who knows how to chew! So my grocery cart is a very peculiar mix of high and low fat stuff.
But over the years I've discovered a lot of things that work for Sam. Some things I can serve to everyone as is (which thrills him) and some things require some last minute adjustment for Sam, but still are essentially the same thing we are eating. Sadly, most of the time he just has to put up with purreed whatever we are eating because I just don't have the time or energy to make it special. But I try to make him food he enjoys.
If I'm having a sandwich for lunch, I put the same stuff in the food processor, meat (or baked tofu or whatever), tomato, pickle (lettuce doesn't work very well). Then I add a goo factor. He likes Kraft Olive Oil reduced fat mayo or that Italian sandwich mix (gardineria?) or ketsup. (I like fancy mustard.) I put in one slice of bread and mix it for 30 seconds. It turns into a kind of sticky glop that holds it's shape. Then I make breadcrumbs (often toasted) of the other slice of bread. I roll tbsp bits of the filling glop in the bread crumbs and shape them into little rectangles. Voila! Finger sandwiches he can eat with me.
Really fluffy pancakes can be eaten just cut up (not pureed) if they have enough syrup on them. Cheese cake is the ideal desert. Cake is not very smart as it crumbles and chokes him, BUT if you add some cream or other liquid it becomes Dulce de Leche and very soggy. Perfect for Sam to consume with a spoon. Looks like cake but doesn't crumble! If you take Starbucks Classic Coffee Cake and pour mocha frappicino over it, you get something similar to Tiramisu! (Be sure to ask the Starbucks Barrista to give you the cake on a plate!)
I recently tried a Butternut Squash Soup with variations that was a huge success. I got the recipe from someone named Gabster Roolz on Cooks.com. Here's my variation:
1 chopped sweet onion
4 cloves garlic
tsp dried basil (or thyme)
Some fresh ginger (about 1/2 a thumb's worth)
Evoo
1 cubed butternut squash
1 C chicken stock
3 C water
1 bay leaf
pepper
2 medium sweet potatoes
1 pt heavy whipping cream (NOT Whipped Cream)
You don't have to chop the garlic and ginger very much since it will all get pureed. Just peel them and chop coarsely. Saute onion, garlic, ginger and basil in the evoo (extra virgin olive oil). Add squash, stock, water, bay leaf, pepper and sweet potato. Boil 20 minutes. REMOVE BAY LEAF. Puree the rest. At the last minute add the cream. The whipping cream adds a lovely bulk to this soup and makes it exactly the right texture for proper swallowing. BIG hit.
The chef Simply Ming says that heavy whipping cream is different from heavy cream because they add something to it to make it whip up better. I don't know but I did love the way the heavy whipping cream bulked up the puree and made it gorgeous. Of course, I suppose I should have the soup without the cream and just add it to Sam's portion...
Here's another thing, I've been reading labels and Carnation Breakfast Essentials has pretty much the same nutrition as Ensure or Boost. It also tastes a LOT better and is MUCH cheaper. You have to add a bit of Thicken or Thick-it to make it the right consistency, but it's still cheaper. Sam consumes 3 or 4 nutrition drinks a day so this is really good news.
Numerous swallow studies have not really given us a solid picture of what is going on or how much this is related to his ever diminishing lung capacity, but it's a pretty safe bet that something that isn't supposed to be there is getting into his lungs and clogging them up.
So I have to feed him very carefully, but it has to be attractive, nutritious and taste good. Culinary challenge they don't often cover on the food network! One bonus: calories and fat are not an issue with this boy. I'm always trying to keep his weight UP.
Of course calories and fat are a huge issue for his mom who knows how to chew! So my grocery cart is a very peculiar mix of high and low fat stuff.
But over the years I've discovered a lot of things that work for Sam. Some things I can serve to everyone as is (which thrills him) and some things require some last minute adjustment for Sam, but still are essentially the same thing we are eating. Sadly, most of the time he just has to put up with purreed whatever we are eating because I just don't have the time or energy to make it special. But I try to make him food he enjoys.
If I'm having a sandwich for lunch, I put the same stuff in the food processor, meat (or baked tofu or whatever), tomato, pickle (lettuce doesn't work very well). Then I add a goo factor. He likes Kraft Olive Oil reduced fat mayo or that Italian sandwich mix (gardineria?) or ketsup. (I like fancy mustard.) I put in one slice of bread and mix it for 30 seconds. It turns into a kind of sticky glop that holds it's shape. Then I make breadcrumbs (often toasted) of the other slice of bread. I roll tbsp bits of the filling glop in the bread crumbs and shape them into little rectangles. Voila! Finger sandwiches he can eat with me.
Really fluffy pancakes can be eaten just cut up (not pureed) if they have enough syrup on them. Cheese cake is the ideal desert. Cake is not very smart as it crumbles and chokes him, BUT if you add some cream or other liquid it becomes Dulce de Leche and very soggy. Perfect for Sam to consume with a spoon. Looks like cake but doesn't crumble! If you take Starbucks Classic Coffee Cake and pour mocha frappicino over it, you get something similar to Tiramisu! (Be sure to ask the Starbucks Barrista to give you the cake on a plate!)
I recently tried a Butternut Squash Soup with variations that was a huge success. I got the recipe from someone named Gabster Roolz on Cooks.com. Here's my variation:
1 chopped sweet onion
4 cloves garlic
tsp dried basil (or thyme)
Some fresh ginger (about 1/2 a thumb's worth)
Evoo
1 cubed butternut squash
1 C chicken stock
3 C water
1 bay leaf
pepper
2 medium sweet potatoes
1 pt heavy whipping cream (NOT Whipped Cream)
You don't have to chop the garlic and ginger very much since it will all get pureed. Just peel them and chop coarsely. Saute onion, garlic, ginger and basil in the evoo (extra virgin olive oil). Add squash, stock, water, bay leaf, pepper and sweet potato. Boil 20 minutes. REMOVE BAY LEAF. Puree the rest. At the last minute add the cream. The whipping cream adds a lovely bulk to this soup and makes it exactly the right texture for proper swallowing. BIG hit.
The chef Simply Ming says that heavy whipping cream is different from heavy cream because they add something to it to make it whip up better. I don't know but I did love the way the heavy whipping cream bulked up the puree and made it gorgeous. Of course, I suppose I should have the soup without the cream and just add it to Sam's portion...
Here's another thing, I've been reading labels and Carnation Breakfast Essentials has pretty much the same nutrition as Ensure or Boost. It also tastes a LOT better and is MUCH cheaper. You have to add a bit of Thicken or Thick-it to make it the right consistency, but it's still cheaper. Sam consumes 3 or 4 nutrition drinks a day so this is really good news.
Wednesday, December 15, 2010
Prostate Surgery
The really important thing to understand, when you are offered DaVinci Prostate surgery, is that when they talk about how simple and easy and almost fun it is - they are talking about the SURGEON'S experience. THEY have a great time. Doing this surgery is more fun (for them) than playing Donkey Kong. What the DON'T tell you is that they blow your stomach up with CO2 so they can see your insides better and THEN they paralyze your bowels so you can't get rid of it. Recovery is really, really painful. Then (while your manly man iswhimpering in pain) they tell you that the catheter they have already put inside you will cause bladder cramps which may be mild or excruciating. "Just expect that". (Query: Will Midol help? I went out and purchased some of those menstrual cramp pads that warm up. Bladder is in the same region as the uterus, maybe the same stuff I used for menstrual cramps will help. I tried getting him to do childbirth breathing when the pain was really intense, but he couldn't focus.)
I brought Charley home late last night. He was very nervous about coming home. The pain has been so intense that, if a CIA operative had walked into the room, he would have gladly confessed to killing Lincoln, Kennedy, MLK AND Lennon.
The down side is that this at-home "hospital ward" has no shifts and only one nurse - me. The upside is that I don't get distracted and I give pain meds on time. (When I got to the hospital last night at 7:30, I asked around and discovered the last time he'd had meds was 11 am - he was very fretful and not thinking straight because of the pain.) So Charley is doing much better at home because I'm making him take his pain meds and stool softeners. Except for bullying him regarding meds, I'm letting him do whatever he feels like doing. He is going up and down stairs to get what he wants, managing his own catheter and getting himself dressed. He is also finding out what things hurt and what things he can do. Sam is better, too. He didn't get enough treatments the last two days because I was running to and from the hospital and he didn't really like having his parents missing. Those two ladies were not great substitutes as far as he was concerned. (Personally, I think they were close relatives of angels.) They kept watching the WRONG shows on HIS tv. He was polite and charming to them, but once they left he let me know that he wasn't very happy. A mother's place is in the home, waiting on him.
So I'm actually doing ok, too. It is too cold to go outside anyway and we're just focused on healing and knitting. It was absolutely great to have him home again and I slept really well. It's cozy and intimate and we're all three really aware of how important we are to each other.
I'm going to put in a PeaPod order later today, so we're okay food wise. So really we need prayers and peace. You could add my hearing aides to your prayer list: I have lost them (They HAVE to be here in the house someplace, I just got distracted) And praise: yesterday I hit a really big pot hole which blew out my tire and bent the rim, but I'm okay and I'm driving Charley's car until we can focus on fixing that. I hit the pot hole right next to a shell gas station and they patched it up enough for me to get home. There are TWO tire places in our alley! So I will be able to get it fixed without driving it again!
I didn't manage to get all the Christmas presents in the mail yet, but the last few are all boxed up and I'll get to it asap.
Tuesday, November 16, 2010
Parenting a Child with Cognitive Issues
I was just watching part of a movie called "A Child is Waiting". I didn't see much of it because my child was waiting for me to change the channel. But I did hear this angry parent instructing his autistic child's caregiver to "just give him everything he wants and make him happy" because he is has a cognitive level of a five year old.
I just have a few things to say about that attitude.
First of all, if your child has the cognitive level of a five year old, I envy you. You can talk to your child and get an answer.
But seriously, if your child is "stuck" at 5 years old that means that he or she is going to be 5 for a very, very long time. So you probably want to look into what are the best parenting techniques for a 5 year old. As far as I know, "giving them everything they want" is light years removed from "making them happy"! Practically no one enjoys being around an over-indulged 5 year old! An over-indulged 5 year old in the body of a 50 year old is a big problem.
5 year olds need boundaries, security and new challenges. They need to know that they can make mistakes and someone will still think they are terrific. They need to know how to obey and cooperate and help to feel important.
But really, people with cognitive disabilities are never "stuck" at any age. That's just someone's short hand method of describing a person's limitations. Who wants to be described by their limitations? Raise your hands. What? No one?
I thought not.
People continue to change throughout their lives. It's nice if there's somebody around to notice. Sam, for example, has the "cognitive level of an 18 month old" whatever that means. But he has been at that level for about 28 years. In that time there have been so many changes and delightful discoveries. He has met and loved so many people and grieved their loss. He has been depressed and elated and everything in between. He is curious about everything and loves to investigate. He is a precious valued member of whatever community he enters. And he needs me to take care of and challenge him.
I need him. I think everyone needs to be needed and Sam thrives in an environment where he knows he is needed. He is part of a family and he is part of a community and he is wise and funny and precious.
Which brings me to what the caregiver in the movie said in response. "The child does not know he is a tragedy. Maybe the tragedy is in you." Some people with cognitive disabilities are smart enough to know they are not like "other" people, but that doesn't mean they are tragedies. "Normal" is kind of a myth anyway. We are so much more than what we know. Getting an advanced degree in college and a high paying job are not guarantees of a happy life.
Tragedy is a society that has upside down values. We should celebrate the people we love and delight in discovering their unique abilities. That doesn't mean life will be easy. Most lives are not. That's something we can call "normal".
I just have a few things to say about that attitude.
First of all, if your child has the cognitive level of a five year old, I envy you. You can talk to your child and get an answer.
But seriously, if your child is "stuck" at 5 years old that means that he or she is going to be 5 for a very, very long time. So you probably want to look into what are the best parenting techniques for a 5 year old. As far as I know, "giving them everything they want" is light years removed from "making them happy"! Practically no one enjoys being around an over-indulged 5 year old! An over-indulged 5 year old in the body of a 50 year old is a big problem.
5 year olds need boundaries, security and new challenges. They need to know that they can make mistakes and someone will still think they are terrific. They need to know how to obey and cooperate and help to feel important.
But really, people with cognitive disabilities are never "stuck" at any age. That's just someone's short hand method of describing a person's limitations. Who wants to be described by their limitations? Raise your hands. What? No one?
I thought not.
People continue to change throughout their lives. It's nice if there's somebody around to notice. Sam, for example, has the "cognitive level of an 18 month old" whatever that means. But he has been at that level for about 28 years. In that time there have been so many changes and delightful discoveries. He has met and loved so many people and grieved their loss. He has been depressed and elated and everything in between. He is curious about everything and loves to investigate. He is a precious valued member of whatever community he enters. And he needs me to take care of and challenge him.
I need him. I think everyone needs to be needed and Sam thrives in an environment where he knows he is needed. He is part of a family and he is part of a community and he is wise and funny and precious.
Which brings me to what the caregiver in the movie said in response. "The child does not know he is a tragedy. Maybe the tragedy is in you." Some people with cognitive disabilities are smart enough to know they are not like "other" people, but that doesn't mean they are tragedies. "Normal" is kind of a myth anyway. We are so much more than what we know. Getting an advanced degree in college and a high paying job are not guarantees of a happy life.
Tragedy is a society that has upside down values. We should celebrate the people we love and delight in discovering their unique abilities. That doesn't mean life will be easy. Most lives are not. That's something we can call "normal".
Thursday, May 27, 2010
Exceptional Parents
There is a great magazine (or anyway was) called Exceptional Parent for the parents of children with developmental disabilities. I haven't seen it in awhile, I guess because Sam isn't really a child anymore. But the idea has stuck with me. Exceptional children require exceptional parents. Sometimes I have risen to that challenge and sometimes I have not. It has troubled me lately that I am on the "not" side of the equation. We are coming up on 60 and retirement and I am TIRED! But Sam's needs keep growing, even though he doesn't. When Charley retires from teaching we will still need income and we are actively thinking about what we might do. I keep asking myself who I am and what am I good at. The answer is always that I am Sam's mom and I am good at being Sam's mom and also a lot of craft stuff.
So fine. My career, so to speak, has effectively been being Sam's mom. I should think of it as my career.
At one time I was a pretty great Executive Assistant to several guys. Now my title is Personal Assistant to Sam. (for which the State of Illinois pays me significantly less than the other guys I was Executive or Personal Assistant to... including the church job!)
Nevertheless. I have been keeping a log of my day and started to explore time management for caregivers. I've taken a lot of time management classes in my life as an Executive Assistant. They often bugged me because they advocated delegation as a great method of time management. When you are the "delegatee" that doesn't help much. Now that I am a stay at home Executive, there has to be a different sort of time management that will work for me.
So I am taking all the stuff I learned and all the realities of my crazy life and trying to come up with a new system. I call it the "worry book". I just keep a spiral notebook and write down all the things I am worried about not getting done. Housework, bills, Sam Care, phone calls, sweaters for the grandkids, grocery shopping. Then on the next page I put tomorrow's date and start thinking about what is most important to get done tomorrow. I have discovered that I think best in the late afternoon or just after dinner. Doing this in the groggy morning when I have to get Charley and (Hopefully Sam) out the door is just not effective.
I have three columns. Time, Task and Actual. I write down the time I hope to get things done and the things I hope to do them. Then on the next day, I keep track of how the day goes and what time (if ever) I actually accomplish my tasks.
In this way, I'm getting a written record of how my day goes and hopefully I will be able to see some ways of becoming more effective at doing my job.
Comments?
So fine. My career, so to speak, has effectively been being Sam's mom. I should think of it as my career.
At one time I was a pretty great Executive Assistant to several guys. Now my title is Personal Assistant to Sam. (for which the State of Illinois pays me significantly less than the other guys I was Executive or Personal Assistant to... including the church job!)
Nevertheless. I have been keeping a log of my day and started to explore time management for caregivers. I've taken a lot of time management classes in my life as an Executive Assistant. They often bugged me because they advocated delegation as a great method of time management. When you are the "delegatee" that doesn't help much. Now that I am a stay at home Executive, there has to be a different sort of time management that will work for me.
So I am taking all the stuff I learned and all the realities of my crazy life and trying to come up with a new system. I call it the "worry book". I just keep a spiral notebook and write down all the things I am worried about not getting done. Housework, bills, Sam Care, phone calls, sweaters for the grandkids, grocery shopping. Then on the next page I put tomorrow's date and start thinking about what is most important to get done tomorrow. I have discovered that I think best in the late afternoon or just after dinner. Doing this in the groggy morning when I have to get Charley and (Hopefully Sam) out the door is just not effective.
I have three columns. Time, Task and Actual. I write down the time I hope to get things done and the things I hope to do them. Then on the next day, I keep track of how the day goes and what time (if ever) I actually accomplish my tasks.
In this way, I'm getting a written record of how my day goes and hopefully I will be able to see some ways of becoming more effective at doing my job.
Comments?
Tuesday, May 04, 2010
Exciting day
Sam and I went to Starbucks today to see are good friend Eileen. Eileen worked very hard for many hours trying to get Sam to say her name, and he used to say it. But he hasn't said anything in years apart from the occasional "Sushi" request!
Later this evening we went to CVS to pick up some meds. Eileen is the manager of a CVS store. Just outside the CVS, Sam stopped and said, "Eileen"!!!! Inside I was showing him a toy I thought he'd love, but he didn't seem too interested. I said, "Sam don't you want this?" and he said, "No." When we got home I was a bit encumbered with some packages and, of course, Sam. I stood at the back stairs and wondered outloud, "How are we going to manage this." Sam said, "Up."
Of course the really sad part is that he has these moments every now and then. And then they are gone again the next day. But it was really great while it lasted.
It confirms in my mind that he really does know what's going on outside his head, he just doesn't remember how to talk very often. One doctor told me that is very common among stroke victims. His theory was that Sam suffered a stroke just a few weeks before birth. Certainly, Sam has many things in common with people who have had a stroke in the same part of the brain that Sam has damage and treating Sam as though he was a stroke victim has been a very good plan. It's probably the best theory we have about what is wrong with Sam. This inability to speak even though he understands what is said to him is called aphasia. He doesn't understand everything, but he understands a lot. I never know how much, but it seems safest to assume he understands just about everything.
I wish we knew. I wish a lot of stuff.
I went to the Esperanza Community Services Annual Banquet last night. It was great, as usual. Amazing food, great art, saw a lot of people I really love and laughed a lot. Bought a quilt made by my friend Margaret. That's a real treasure!
But there is a real problem with going out in public. People say stuff and I don't know the correct response. For example, several people last night said that old line "I don't know how you do it. You are amazing." I don't know what I'm supposed to say to comments like that. I have tried many responses and rejected even more. Like I have never actually said, "Well, my parents are from the Planet Krypton." Last night, I came up with a new response. I said, "Well, he's just so darn cute. It really makes things easy." I haven't slept in two nights, but he's so cute that I don't mind... much... Well I do mind. A lot. But I don't know what else to do. Oh! Oh! There's a good response: "I'm just too stupified with exhaustion to think of an alternative to doing what I do."
Another response I've been thinking of using is to tell that story of the frog in the boiling pot. You know the one: If you put a frog in a pot of boiling water he jumps right out again. If you put him in a pot of cold water and gradually turn up the heat, he'll just swim around until he's cooked.
If someone hands you a kid with profound and multiple disabilities and tells you the whole litany of problems all in one go, you run for the hills. On the other hand, if someone gives you a beautiful baby boy who just has trouble swallowing, you learn to cope. Then they say, "well he seems to have one or two other problems." And you notice a few more as the weeks and months go by. Each time you say, "Well, that's just one more little thing." After awhile the doctor can say, "well, he seems to have spinal meningitis and he's probably going to die in the next few hours. Oh no. Our mistake, it's just an ear infection." That's a great strategy because you hardly notice the next 42 little new things wrong because you're so happy he made it through the spinal meningitis thing. After that, they keep on adding stuff gradually for 28 years! So when someone comes up to you and says, "Wow! You're swimming around in boiling water and you look just fine." You say, "Well, he just so darn cute."
I don't believe that story about the frog. Who would do such a thing to a poor frog anyway? Or why? Maybe I should go with the one about my parents being from Krypton.
Later this evening we went to CVS to pick up some meds. Eileen is the manager of a CVS store. Just outside the CVS, Sam stopped and said, "Eileen"!!!! Inside I was showing him a toy I thought he'd love, but he didn't seem too interested. I said, "Sam don't you want this?" and he said, "No." When we got home I was a bit encumbered with some packages and, of course, Sam. I stood at the back stairs and wondered outloud, "How are we going to manage this." Sam said, "Up."
Of course the really sad part is that he has these moments every now and then. And then they are gone again the next day. But it was really great while it lasted.
It confirms in my mind that he really does know what's going on outside his head, he just doesn't remember how to talk very often. One doctor told me that is very common among stroke victims. His theory was that Sam suffered a stroke just a few weeks before birth. Certainly, Sam has many things in common with people who have had a stroke in the same part of the brain that Sam has damage and treating Sam as though he was a stroke victim has been a very good plan. It's probably the best theory we have about what is wrong with Sam. This inability to speak even though he understands what is said to him is called aphasia. He doesn't understand everything, but he understands a lot. I never know how much, but it seems safest to assume he understands just about everything.
I wish we knew. I wish a lot of stuff.
I went to the Esperanza Community Services Annual Banquet last night. It was great, as usual. Amazing food, great art, saw a lot of people I really love and laughed a lot. Bought a quilt made by my friend Margaret. That's a real treasure!
But there is a real problem with going out in public. People say stuff and I don't know the correct response. For example, several people last night said that old line "I don't know how you do it. You are amazing." I don't know what I'm supposed to say to comments like that. I have tried many responses and rejected even more. Like I have never actually said, "Well, my parents are from the Planet Krypton." Last night, I came up with a new response. I said, "Well, he's just so darn cute. It really makes things easy." I haven't slept in two nights, but he's so cute that I don't mind... much... Well I do mind. A lot. But I don't know what else to do. Oh! Oh! There's a good response: "I'm just too stupified with exhaustion to think of an alternative to doing what I do."
Another response I've been thinking of using is to tell that story of the frog in the boiling pot. You know the one: If you put a frog in a pot of boiling water he jumps right out again. If you put him in a pot of cold water and gradually turn up the heat, he'll just swim around until he's cooked.
If someone hands you a kid with profound and multiple disabilities and tells you the whole litany of problems all in one go, you run for the hills. On the other hand, if someone gives you a beautiful baby boy who just has trouble swallowing, you learn to cope. Then they say, "well he seems to have one or two other problems." And you notice a few more as the weeks and months go by. Each time you say, "Well, that's just one more little thing." After awhile the doctor can say, "well, he seems to have spinal meningitis and he's probably going to die in the next few hours. Oh no. Our mistake, it's just an ear infection." That's a great strategy because you hardly notice the next 42 little new things wrong because you're so happy he made it through the spinal meningitis thing. After that, they keep on adding stuff gradually for 28 years! So when someone comes up to you and says, "Wow! You're swimming around in boiling water and you look just fine." You say, "Well, he just so darn cute."
I don't believe that story about the frog. Who would do such a thing to a poor frog anyway? Or why? Maybe I should go with the one about my parents being from Krypton.
Sunday, March 14, 2010
Control Issues
I just don't get it. I did everything right. All I wanted to do was go to church and sing in the choir. So yesterday I spent the whole day focused on doing everything possible to make sure Sam got a good night's sleep. I changed the clocks forward first thing in the morning hoping to "psych" us all into the time change. I fed him regularly. I made sure to pay attention to him so he didn't feel ignored. I did his 45 minute treatments three times and I made sure his medications were correctly balanced. I even changed the furnace filter because it was looking a little gray on the theory that clean air helps him breathe better. (It's just a theory. The allergist says he's not allergic to anything. His breathing problems are because of the way his head is shaped and because of the way his brain works.)
I bragged to a friend that I had finally reached acceptance of the fact that my number one priority is managing Sam's lungs. If I do the treatments correctly and get him to the chiropractor twice a month, he is fine. Even the apnea is reduced. If I let the schedule get out of sync, he is miserable. And so am I. It's a very plain fact. My life is ruled by this routine.
How nice. How safe and predictable. I am secure and in control of my life. Keep it simple and keep it sane. That's my motto. Stress and failure occur when I rebel, peace and success are the result of faithfulness.
Wrong.
In spite of doing everything right, Sam and I were up until 3 am. He was groaning in sinus pain and trying to be brave. I was tender and sympathetic and trying not to hit him over the head or give him whiskey. I WANT TO SING IN THE CHOIR!!! Can't he get that?
How deeply spiritual I am not in the middle of the night. On Friday I did the Stations of the Cross and Taize and then Luis gave a very lovely bi-lingual talk. I sang. I read really good scripture verses. I got to see so many of the people I love. Rosie and I actually talked about how important it is for choir members to worship as they sing. It makes a big difference if we worship instead of perform. I don't do either. I just love to sing with other people. Well, maybe that's worship on a very primitive level. I only get to do this twice a month on a good month. I miss those two Sundays often because of Sam.
Two weeks ago I gave a talk at another church. One of the major themes of my talk was we are not in control. Why do bad things happen to good people? Because bad things happen to all of us. God does not cause them to happen. They are not part of God's divine plan. The Bible is full of stories about bad things happening for no reason or because of an enemy. Whether the enemy is a person or an event or Satan, bad things happen and people in the Bible turn to God and ask for help. Joseph says to his brothers, "You meant it for evil, but God meant it for good." Paul says to the Romans, "All things work together for good." In other words, God answers prayer and comes to us in our distress and redeems the situation. Sometimes. God redeems us always. Eventually.
Last week I got to go to SPRED church. We all three made it and Charley played with that choir. It is a wonderful sound. I do worship when I go to SPRED church and especially when I hear Charley playing lovely music. The message from Fr. Jim was something like "Jesus says to you today where you are standing right now is holy ground. Let the fire of my divine presence grow within you. Nurture it." I'm home this morning. Where I stand is holy ground. I have a Bible and some really good tea and Sam's asleep. I can go upstairs and turn on some music and nurture the divine in me. That is always a possibility.
I spend soooo much time alone I'm becoming a Desert Mother and not by choice.
I have often said that I don't have any choice or control over the bad things that come to me. BUT I do have a choice about how I will respond to them. That's the part where God comes in. God is apparently not going to intervene and make Sam healthy. But God can help me appreciate my time with him and love my life and manage the difficulties, if I ask. Although I wouldn't say no to a healing...
But in spite of all my wisdom and 28 years of learning the same lesson over and over and over again, this morning I'm just grumpy. I didn't get enough sleep last night, I was scared and unsure what to do for most of it and this morning I don't get to sing with the choir. Life's not fair.
Do you know that the divorce rate among families who have a child with disabilities is somewhere around 98%? The fact that I make it to church at all is due to the fact that we remain a two parent household after all these years. There's a miracle. Charley is playing his saxophone this morning in our old church. I hope he gets a lot of love and gratitude. I hope he comes home feeling good and refreshed and ready for another week at work.
I hope I get to go to church next week. AND SING!
I bragged to a friend that I had finally reached acceptance of the fact that my number one priority is managing Sam's lungs. If I do the treatments correctly and get him to the chiropractor twice a month, he is fine. Even the apnea is reduced. If I let the schedule get out of sync, he is miserable. And so am I. It's a very plain fact. My life is ruled by this routine.
How nice. How safe and predictable. I am secure and in control of my life. Keep it simple and keep it sane. That's my motto. Stress and failure occur when I rebel, peace and success are the result of faithfulness.
Wrong.
In spite of doing everything right, Sam and I were up until 3 am. He was groaning in sinus pain and trying to be brave. I was tender and sympathetic and trying not to hit him over the head or give him whiskey. I WANT TO SING IN THE CHOIR!!! Can't he get that?
How deeply spiritual I am not in the middle of the night. On Friday I did the Stations of the Cross and Taize and then Luis gave a very lovely bi-lingual talk. I sang. I read really good scripture verses. I got to see so many of the people I love. Rosie and I actually talked about how important it is for choir members to worship as they sing. It makes a big difference if we worship instead of perform. I don't do either. I just love to sing with other people. Well, maybe that's worship on a very primitive level. I only get to do this twice a month on a good month. I miss those two Sundays often because of Sam.
Two weeks ago I gave a talk at another church. One of the major themes of my talk was we are not in control. Why do bad things happen to good people? Because bad things happen to all of us. God does not cause them to happen. They are not part of God's divine plan. The Bible is full of stories about bad things happening for no reason or because of an enemy. Whether the enemy is a person or an event or Satan, bad things happen and people in the Bible turn to God and ask for help. Joseph says to his brothers, "You meant it for evil, but God meant it for good." Paul says to the Romans, "All things work together for good." In other words, God answers prayer and comes to us in our distress and redeems the situation. Sometimes. God redeems us always. Eventually.
Last week I got to go to SPRED church. We all three made it and Charley played with that choir. It is a wonderful sound. I do worship when I go to SPRED church and especially when I hear Charley playing lovely music. The message from Fr. Jim was something like "Jesus says to you today where you are standing right now is holy ground. Let the fire of my divine presence grow within you. Nurture it." I'm home this morning. Where I stand is holy ground. I have a Bible and some really good tea and Sam's asleep. I can go upstairs and turn on some music and nurture the divine in me. That is always a possibility.
I spend soooo much time alone I'm becoming a Desert Mother and not by choice.
I have often said that I don't have any choice or control over the bad things that come to me. BUT I do have a choice about how I will respond to them. That's the part where God comes in. God is apparently not going to intervene and make Sam healthy. But God can help me appreciate my time with him and love my life and manage the difficulties, if I ask. Although I wouldn't say no to a healing...
But in spite of all my wisdom and 28 years of learning the same lesson over and over and over again, this morning I'm just grumpy. I didn't get enough sleep last night, I was scared and unsure what to do for most of it and this morning I don't get to sing with the choir. Life's not fair.
Do you know that the divorce rate among families who have a child with disabilities is somewhere around 98%? The fact that I make it to church at all is due to the fact that we remain a two parent household after all these years. There's a miracle. Charley is playing his saxophone this morning in our old church. I hope he gets a lot of love and gratitude. I hope he comes home feeling good and refreshed and ready for another week at work.
I hope I get to go to church next week. AND SING!
Sunday, February 28, 2010
Macbeth Poem
Hi to all my new friends at the St. Mark Lutheran Church in Worth, Il!!!
Here's the poem, as requested. I wrote it when Sam was about 2 1/2 years old.
Child Victor
Born: Like Caesar
Natural child
Torn in unnatural manner
From natural mother
Into cold, unnatural sterility.
Purple with rage,
You tore needles from your flesh
Until they pinned you down.
In that world of hoses down throats and bright lights
And rock music
YOU
Were a giant.
"He will never see,
Never walk, never talk,
He fails to thrive.
Profoundly retarded, profoundly disabled
And probably
A Dwarf."
You laugh.
And seeing me at the far end of the hall,
Cry, "Mama!"
As you slowly inch your way down your own
Olympic course,
And finally,
Reach your goal.
I lift you up.
With four gold medals glowing in our four eyes
We two alone, are buffeted
By crowds of angels
Cheering.
"He will never..."
That lies like truth.
Never: 'Till Burnham Wood do come to Dunsinane
In two short years,
I have seen you do what no Doctor
Born of woman
Believed you could do.
So lead on MacDuff and Damned be he who first cries
"Hold enough!"
By Jeanne Forsberg with help from Shakespeare.
Here's the poem, as requested. I wrote it when Sam was about 2 1/2 years old.
Child Victor
Born: Like Caesar
Natural child
Torn in unnatural manner
From natural mother
Into cold, unnatural sterility.
Purple with rage,
You tore needles from your flesh
Until they pinned you down.
In that world of hoses down throats and bright lights
And rock music
YOU
Were a giant.
"He will never see,
Never walk, never talk,
He fails to thrive.
Profoundly retarded, profoundly disabled
And probably
A Dwarf."
You laugh.
And seeing me at the far end of the hall,
Cry, "Mama!"
As you slowly inch your way down your own
Olympic course,
And finally,
Reach your goal.
I lift you up.
With four gold medals glowing in our four eyes
We two alone, are buffeted
By crowds of angels
Cheering.
"He will never..."
That lies like truth.
Never: 'Till Burnham Wood do come to Dunsinane
In two short years,
I have seen you do what no Doctor
Born of woman
Believed you could do.
So lead on MacDuff and Damned be he who first cries
"Hold enough!"
By Jeanne Forsberg with help from Shakespeare.
Sunday, December 27, 2009
If you aren't busy being born, you are busy dying
For over a year now, I've been focused on the fact that Sam is dying. If the sleep apnea doesn't get him, the bronchiecstasis will. He's a little weaker today than he was a year ago. He is missing more and more days at Esperanza because we just can't get it together get him strong enough to go.
A couple of weeks ago I started thinking that this terror of his death has me "stuck". I am missing out on the joy of today because of the terror of some future event. He might go another 50 years or he might die tomorrow. But hold on, that is also true of ME. That's... NORMAL! Well, gosh.
In the meantime, what IS extraordinary is that I love my job. I get to take care of Sam. I get to love Sam. I get to wake him up and see his eyes crinkle up with joy when he sees me.
I live with a secret. I look fairly common place, but in my heart is a source of joy and pain that is absolutely profound. The same thing that brings me my greatest joy is the thing that is the source of my deepest fear and pain. I have a son who is full of life and joy and who is sick more often than he is well and who is going to die. Taking care of him is the greatest honor of my life, my highest achievement and it's not going to make me famous or solve world hunger or stop war. (Sorry, Dad.)
Caregiving transforms me. Caregiving is my spiritual practice. Caregiving is Zen.
I rented "How to Cook Your Life" and watched it last night. I love it. Edward Espe Brown is so sincere and transparent. He recites a poem from the last letter his mom wrote before she died. It's by Donald Babcock and first appeared in the New Yorker on October 4, 1947 (V.23, No. 33, pp 38-39)
A couple of weeks ago I started thinking that this terror of his death has me "stuck". I am missing out on the joy of today because of the terror of some future event. He might go another 50 years or he might die tomorrow. But hold on, that is also true of ME. That's... NORMAL! Well, gosh.
In the meantime, what IS extraordinary is that I love my job. I get to take care of Sam. I get to love Sam. I get to wake him up and see his eyes crinkle up with joy when he sees me.
I live with a secret. I look fairly common place, but in my heart is a source of joy and pain that is absolutely profound. The same thing that brings me my greatest joy is the thing that is the source of my deepest fear and pain. I have a son who is full of life and joy and who is sick more often than he is well and who is going to die. Taking care of him is the greatest honor of my life, my highest achievement and it's not going to make me famous or solve world hunger or stop war. (Sorry, Dad.)
Caregiving transforms me. Caregiving is my spiritual practice. Caregiving is Zen.
I rented "How to Cook Your Life" and watched it last night. I love it. Edward Espe Brown is so sincere and transparent. He recites a poem from the last letter his mom wrote before she died. It's by Donald Babcock and first appeared in the New Yorker on October 4, 1947 (V.23, No. 33, pp 38-39)
The Little DuckMaybe I resonate with this poem because I spent so much of my youth cuddling in the gentle heaves of the mighty Pacific, past the breakers, and feeling rocked by the womb of the world. But I do resonate with it. This poem came to me last night when I needed it. I am the primary caregiver to a philosopher who is just like this duck. I can learn from him how to repose in the infinity which is now and ease into the the boundlessness of today. That is religion. That is something I can do. Today just might be the best day of the rest of my life, and today is beautiful. I get to go feed Sam.
Now we're going to look at something pretty special.
It is a duck riding the ocean a hundred feet beyond the surf.
No, it isn't a gull.
A gull always has a raucous touch about him.
This is some sort of duck, and he cuddles in the swells.
He isn't cold, and he is thinking things over.
There is a big heaving in the Atlantic,
And he is part of it.
He looks a bit like a mandarin, or the Lord Buddha meditating under the Bo tree.
But he has hardly enough above the eyes to be a philosopher.
He has poise, however, which is what philosophers must have.
He can rest while the Atlantic heaves, because he rests in the Atlantic.
Probably he doesn't know how large the ocean is.
And neither do you.
But he realizes it.
And what does he do, I ask you. He sits down in it.
He reposes in the immediate as if it were infinity - which it is.
That is religion, and the duck has it.
He has made himself a part of the boundless, by easing into it just where it touches him.
Friday, October 16, 2009
What Have I Accomplished?
Yesterday my therapist and I were discussing my diagnosis of PTSD. This is a bit of a misnomer. I've never been in a war zone or been attached by dogs or raped or anything like that. I actually suffer from CHRONIC Traumatic Stress Disorder, except there isn't any such thing. There should be. It's the result of being the oldest daughter of a WWII vet who DID have PTSD, which gives me a vulnerability to developing it, combined with 27 years and counting as the mother and primary caregiver of a profoundly sick and disabled son. (In this case, Person First language is inappropriate. Sick and Disabled are the point of that sentence). And then, the final blow, the brutal murder of my PTSD Dad 4 years ago. These things combined have transformed me into someone I am struggling to get to know. Someone who apparently deserves the diagnosis of PTSD.
So we were talking about my life and my guilty feeling that I haven't accomplished much. I'm no Madame Curie and I sort of grew up thinking I should/could be. She (my therapist) said that I'm too close to my life to be able to stand away from it and say, "WOW. That's a lot of work." All I can see is that I'm getting more and more tired and frightened and that there are days when I really don't want to leave the house. I just want to stay home, take care of Sam and do something creative. And, the way my life is constructed, I can do that. Which makes me grateful but I wonder if I'm really pulling my own weight. Maybe I'm so far from being Madame Curie that I'm actually a wimp.
I should mention here that I shared this fear with my husband at dinner and he actually snorted! (A comforting sound) and said, "You are NOT a wimp. No one is Madame Curie." God Bless him. Since he gets up every morning and goes to a very difficult job without complaining, his opinion means a lot.
Another thing that happened yesterday was I got to sit in with Sam's Spred Group at Agape and watch while someone else struggled to keep him clean and keep him from aspirating food and keep him from stealing food from someone else's plate. It's a frantic activity. She's really good at it and I trust that she takes the whole thing very seriously. It was like looking at myself as other people must see us when we eat at a restaurant. It looked really hard. It looked really beautiful because they obviously enjoyed each other. For the first time, I sort of understood why perfect strangers think it is okay to interrupt us in restaurants and say drippy things like "God had sent you a little angel". ("The Stars are God's Daisy Chain" - Madeline Basset) "Angel" is not the first image that comes to mind when you are wiping chocolate milk and snot out of your son's nose.
So I was thinking about this "standing back from my own life" thing. The closest I can come to that right now is the secret thoughts I have and shove away because they are not nice. For example, when I am talking to a new mother. She will talk about how tired she is and how the baby never stops crying and how nasty poopy diapers are. She is afraid the baby might have a little cold or an ear infection. I will give her grandmotherly sympathy and, if appropriate, suggestions. Usually she just needs encouragement and approval. I'm good at giving those.
But here are the thoughts I'm struggling NOT to think: "You WIMP! Your baby will be fine and 6 months from now you will be sleeping soundly." MY baby has grownup poop and pubic hair. Try changing THAT. (grumble, grumble) I have been changing diapers every day for the last 30+ years.
For 27+ years, I have gotten up in the middle of the night to be sure my child is still breathing and often sat beside him and waited too long for the next breath. It is routine for my husband or myself to get him up and do some physical therapy or connect him to some machine to stimulate his breathing.
I have ceaselessly watched my child with an eagle eye to see that he doesn't aspirate too much liquid. I have tried to get his other occasional caregivers to understand the life and death importance of feeding him appropriately. When I drop him off for a few hours at school or Adult Day Care I worry that they think I am over-reacting and will not take my instructions seriously.
I have slept in hospital beds beside him when he is hovering between life and death. I literally pull him back from the brink of death 3 or 4 times every year. I check his oxygen blood levels every night at least once, usually more. I have 3 machines which I use on him 2 or 3 times a day to keep him breathing. I have 3 more I can use if he needs them. I grind up everything he eats and then try to form the pureed food into something that doesn't look pureed because he doesn't like to eat pureed food. I have developed a kind of mental telepathy with him because he is non-verbal. I am the captain of a team of doctors who advise me, but defer to me as the primary care-giver. This is a responsibility I accept gravely and with terror. I just barely have a Bachelor's Degree! But I guess I deserve a doctorate in "Sam".
I worry that the roofers will light a cigarette while I am giving him oxygen and blow up the house. I have told them how dangerous it is over and over again and they say, "Yes, yes." But I still find cigarette butts in the garden under the eaves.
I clean blood and chocolate milk out of my son's ears so routinely that it doesn't even occur to me to call a doctor.
There are so many things that I deal with calmly at home without even thinking of calling the doctor. These are things that would have any other parent calling 911! But I know how to treat them and a trip to the ER is so hard on him. I went to the ER so many times early on. Now its only once every year or even less. This is partly because he is stronger and partly because I know what to do at home. It's much easier to treat him at home where we can all watch Kung Fu Panda and sleep in our own beds.
That ER hiatus may be drawing to a close, however. His health is very slowly deteriorating and there may come a time when frequent ER trips once again become routine. I try not to think about the future very often. If it happens, it will happen when it happens.
He looks so happy and "normal" because I have dedicated my life to keeping him that way. But people don't understand how fragile he is because he doesn't have tubes coming out of him. I have fought against tubes because I want him to be happy. I hope I have made the right decision. When he dies, I will worry that it was because I refused the tubes. But no one ever knows what would have happened if... He looks so happy, doesn't he?
Sam Care is wearing me out and I'm getting older. I see what happens when a mom dies at 82 or something and there is no provision for her child. It's terrible. Yet, here in Illinois, there really isn't any way to plan ahead. I worry about what happens if he doesn't die first. I worry about how I will continue to live without him if he does die first. I can't imagine living without him.
Wow. That is a lot of work. Maybe I am not a wimp.
But there are occasional days when I am too tired or too depressed to do his machines, or only do them once instead of 2 or 3 times. There are days when all he will eat is Ensure and I give up and take him out to IHOP because I know, nutritious or not, at least he will not go to bed hungry.
For 27+ years I have struggled with the question, "Is it really okay to take a break?" "If/When he dies, will it be because I missed a treatment here and there?" People are always telling me it is important to take care of myself. I see the logic of this. Where would Sam be if I got sick or died? Sam himself knows how important I am and worries if I seem to be sick or if I walk away from him in a public place. But the fact remains that every instant I spend on myself is time I didn't spend on him. What is the cost of that?
So we were talking about my life and my guilty feeling that I haven't accomplished much. I'm no Madame Curie and I sort of grew up thinking I should/could be. She (my therapist) said that I'm too close to my life to be able to stand away from it and say, "WOW. That's a lot of work." All I can see is that I'm getting more and more tired and frightened and that there are days when I really don't want to leave the house. I just want to stay home, take care of Sam and do something creative. And, the way my life is constructed, I can do that. Which makes me grateful but I wonder if I'm really pulling my own weight. Maybe I'm so far from being Madame Curie that I'm actually a wimp.
I should mention here that I shared this fear with my husband at dinner and he actually snorted! (A comforting sound) and said, "You are NOT a wimp. No one is Madame Curie." God Bless him. Since he gets up every morning and goes to a very difficult job without complaining, his opinion means a lot.
Another thing that happened yesterday was I got to sit in with Sam's Spred Group at Agape and watch while someone else struggled to keep him clean and keep him from aspirating food and keep him from stealing food from someone else's plate. It's a frantic activity. She's really good at it and I trust that she takes the whole thing very seriously. It was like looking at myself as other people must see us when we eat at a restaurant. It looked really hard. It looked really beautiful because they obviously enjoyed each other. For the first time, I sort of understood why perfect strangers think it is okay to interrupt us in restaurants and say drippy things like "God had sent you a little angel". ("The Stars are God's Daisy Chain" - Madeline Basset) "Angel" is not the first image that comes to mind when you are wiping chocolate milk and snot out of your son's nose.
So I was thinking about this "standing back from my own life" thing. The closest I can come to that right now is the secret thoughts I have and shove away because they are not nice. For example, when I am talking to a new mother. She will talk about how tired she is and how the baby never stops crying and how nasty poopy diapers are. She is afraid the baby might have a little cold or an ear infection. I will give her grandmotherly sympathy and, if appropriate, suggestions. Usually she just needs encouragement and approval. I'm good at giving those.
But here are the thoughts I'm struggling NOT to think: "You WIMP! Your baby will be fine and 6 months from now you will be sleeping soundly." MY baby has grownup poop and pubic hair. Try changing THAT. (grumble, grumble) I have been changing diapers every day for the last 30+ years.
For 27+ years, I have gotten up in the middle of the night to be sure my child is still breathing and often sat beside him and waited too long for the next breath. It is routine for my husband or myself to get him up and do some physical therapy or connect him to some machine to stimulate his breathing.
I have ceaselessly watched my child with an eagle eye to see that he doesn't aspirate too much liquid. I have tried to get his other occasional caregivers to understand the life and death importance of feeding him appropriately. When I drop him off for a few hours at school or Adult Day Care I worry that they think I am over-reacting and will not take my instructions seriously.
I have slept in hospital beds beside him when he is hovering between life and death. I literally pull him back from the brink of death 3 or 4 times every year. I check his oxygen blood levels every night at least once, usually more. I have 3 machines which I use on him 2 or 3 times a day to keep him breathing. I have 3 more I can use if he needs them. I grind up everything he eats and then try to form the pureed food into something that doesn't look pureed because he doesn't like to eat pureed food. I have developed a kind of mental telepathy with him because he is non-verbal. I am the captain of a team of doctors who advise me, but defer to me as the primary care-giver. This is a responsibility I accept gravely and with terror. I just barely have a Bachelor's Degree! But I guess I deserve a doctorate in "Sam".
I worry that the roofers will light a cigarette while I am giving him oxygen and blow up the house. I have told them how dangerous it is over and over again and they say, "Yes, yes." But I still find cigarette butts in the garden under the eaves.
I clean blood and chocolate milk out of my son's ears so routinely that it doesn't even occur to me to call a doctor.
There are so many things that I deal with calmly at home without even thinking of calling the doctor. These are things that would have any other parent calling 911! But I know how to treat them and a trip to the ER is so hard on him. I went to the ER so many times early on. Now its only once every year or even less. This is partly because he is stronger and partly because I know what to do at home. It's much easier to treat him at home where we can all watch Kung Fu Panda and sleep in our own beds.
That ER hiatus may be drawing to a close, however. His health is very slowly deteriorating and there may come a time when frequent ER trips once again become routine. I try not to think about the future very often. If it happens, it will happen when it happens.
He looks so happy and "normal" because I have dedicated my life to keeping him that way. But people don't understand how fragile he is because he doesn't have tubes coming out of him. I have fought against tubes because I want him to be happy. I hope I have made the right decision. When he dies, I will worry that it was because I refused the tubes. But no one ever knows what would have happened if... He looks so happy, doesn't he?
Sam Care is wearing me out and I'm getting older. I see what happens when a mom dies at 82 or something and there is no provision for her child. It's terrible. Yet, here in Illinois, there really isn't any way to plan ahead. I worry about what happens if he doesn't die first. I worry about how I will continue to live without him if he does die first. I can't imagine living without him.
Wow. That is a lot of work. Maybe I am not a wimp.
But there are occasional days when I am too tired or too depressed to do his machines, or only do them once instead of 2 or 3 times. There are days when all he will eat is Ensure and I give up and take him out to IHOP because I know, nutritious or not, at least he will not go to bed hungry.
For 27+ years I have struggled with the question, "Is it really okay to take a break?" "If/When he dies, will it be because I missed a treatment here and there?" People are always telling me it is important to take care of myself. I see the logic of this. Where would Sam be if I got sick or died? Sam himself knows how important I am and worries if I seem to be sick or if I walk away from him in a public place. But the fact remains that every instant I spend on myself is time I didn't spend on him. What is the cost of that?
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