This update is for October 18, 2007
PLEASE NOTE: We threw in the towel in our battle with Time-Warner cable, so we've got new email addresses: Jeff's is manonash@verizon.net Lynn's is lynnswan7@verizon.net (note the number 7 after lynnswan) Over the past few months, we've failed to receive a bunch of emails from friends and many emails we sent got lost. If you wrote expecting a reply but did not receive one, please resend your email.
Dear friends and family,
Today, like most days, I came downstairs around 7 am and found Danny sleeping comfortably, with Misti sitting beside him. Lately, he's been moving a lot at night, stretching his limbs and sliding down in his bed -- his head is kept elevated because he continues to get food and water throughout the night via his feeding tube. So, first thing each day, we pull him up, then turn him and check for any pressure spots. He often moans in slight annoyance at being rudely awakened in this fashion.
Next we place pillows on one side or the other of his body, changing them every two hours to prevent sores.
When Misti leaves for the day and Danny goes back to sleep, I head to the backyard where a couple of amiable squirrels wait for me to set out a pile of nuts and a little pine box with a hinged lid that they lift to get at sunflower seeds, peanuts and, much to Lynn's consternation, raw almonds. Lynn's not the only one who finds the almonds extravagant, but then, we don't indulge ourselves much these days, so why not spoil the squirrels, some of whom eat the nuts out of my hand? Besides, they entertain Danny no end when he's sitting the backyard sun.
A pair of bird feeders and several finch socks full of thistle seeds have made our yard a very popular eatery for hundreds of gregarious sparrows, chickadees, finches, buntings, a quartet of erudite crows and, alas, a few dozen dim-witted pigeons. We've also had occasional sightings of hawks, falcons and owls. And other mammals like raccoons, opossums and the neighbor's cat who is shooed off when she comes in search of a bird for lunch. There used to be plenty of rats before the owls and hawks became regular habitus.
All this wildlife is crammed into a little fenced-in suburban square measuring about 28 by 28 feet. And I could have sworn I found moose tracks the other day--which reminds me of the time Danny was about four and we were driving from Boston to my mom's place in New Hampshire and we excitedly pointed out the "Moose Crossing" sign on the highway to him. And Danny thought a moment and then asked, "How do the moose know to cross there?"
After setting out the backyard breakfast nosh, I go to the kitchen and make Danny's morning drink. Since we stopped giving him the canned "sludge", he's done much better, sleeping throughout the night, with none of the sweats that used to plague him. The canned supplement, like so much food bought and sold in the U.S. these days, is designed for shelf-life first and nutrition second. It's great for keeping patients alive, not so good for keeping them well. The drink we give him these days has about thirty ingredients, including protein powder; complex carbohydrate powder; olive, flax and fish oils for calories and omega-3 fatty acids; enzymes; amino acids and other stuff.
Given all this, and the fact that Danny doesn't consume sugar, wheat, dairy or alcohol, he's probably the healthiest person I know.
Around 9 am each day, while Danny's food drips from the feeding machine into the tube connected to his stomach, I get to some emails and/or bills. If he wakes, I read him the sports section or one of several books we're in the middle of. It's an eclectic reading list these days: biographies of the late great punk-rocker Joe Strummer and Indian master Meher Baba; the Hindu epic "The Ramayana"; short stories by Irish writer Padraic OConnaire; and a book of Islamic children's stories. In the afternoons, Lynn often reads the Harry Potter books to Danny. I think they're on the fifth book by now.
Lynn, who stays up at night with Danny until 1 am or later, comes downstairs about 10 am, kisses her boy (and her man) and consumes her morning fuel: a pot of Bailey's Irish tea, strong enough to subdue a banshee.
Once Lynn has been activated, it's time for the business at hand. Every other day is shower day. We used to face this activity with dread, but we've now got it down to a quick stress-free routine. We set Danny on a nylon sling and use the power lift to raise him and roll him into the bathroom. There, he sits in the sling beneath the stream of water while I shave him and bathe his body, then call for Lynn who comes in to shampoo his hair and wash his face. When he's done, we wheel him to the bed, dry him carefully and roll him off the sling and plastic tablecloth used to keep the bed dry. After applying powders and lotions, Lynn blow-dries his hair while I dry off the lift and bathroom floor.
We let him rest for a bit as he usually wants to sleep after a shower, then we get him dressed and, using a second, thicker sling, we lift him up out of bed again. From there, we'll often go to the tilt table where Danny is strapped down and cranked up into a near- vertical position. He'll stay there for an hour or so, while I sit at his feet to make sure his ankles don't buckle while they bear weight.
Most afternoons we bring Danny out into the yard to soak up some vitamin D in the sunshine while he sleeps, watches the wildlife cavort or listens to us read.
Before or after going outdoors, we set up the therapy table and hoist him onto it for an hour's workout. With me behind him and Lynn at his feet (and often with the assistance of a friend of a friend or two) we do some initial stretching. Then we'll have him sit up on his own, without assistance, for a minute or two while leaning forward. Next I ask him to lean back until he falls against me. To do this he has to push up on his arms, straighten his back and raise his head. A lot of work--he couldn't do it six months ago but now he accomplishes it daily.
We've recently been holding Danny's hands and slowly moving them to touch his nose, mouth, ears and chin, narrating each movement to him. Because of the tone in his limbs (tightness that comes and goes), these movements are sometimes difficult but he's seems to be getting more flexible. Week before last, Lynn asked him to lift his hand by himself and touch his nose. It took a long long time--his hand moved millimeter by millimeter while we cheered him on--until finally he touched. Pretty incredible to behold.
He's still doing the tough math problems, knocking over plastic cones, hitting notes on his keyboard and playing blackjack with friends. Last week Lynn asked Danny who he favored for president, writing "Hilary Clinton", "Barack Obama" and "?" (we told him this last choice meant either someone else or "don't care"). He moved pretty quickly to touch Obama, and repeated the gesture when I reset his hand and asked again.
A few weeks ago he developed a pretty bad rash on his legs that had us worried. Getting him up on the table, I laid the alphabet board on his lap and asked him for a message to ease mom and dad's concern about the rash. He spelled out "I LOVE YOU". I then asked him if he was happy and he touched "YES". The rash has since cleared up.
Most days, after therapy, we lay Danny down on his back and I range his limbs for an hour, slowly bending his legs, arms and hands. When we do this to music, he seems to be more flexible and, I'd have to say, enthusiastic.
Lynn and I will often play music and move his arms as if he were playing guitar or drum solos. In the last month, I've been able to open his right hand more and more. It had always been clenched before.
By around 5 pm, Danny is in his wheelchair, often in front of the television where we watch sports when there's a good game on (these days it's the baseball playoffs). By this time he's ready for his second feeding of the day. Along about 8 pm, we move him back to his bed where he loves watching silent movie comedies (Chaplin, Keaton, Laurel & Hardy) on a computer. Silent movies are good because he'll drift off to sleep undisturbed by noisy dialogue or sound effects. He watches a lot of Meher Baba videos as well.
After getting Danny to bed, Lynn and I drop ourselves in front of the TV, usually to watch a movie. Each night at ten pm, we join hands with Danny to say Meher Baba's "Beloved God" prayer before I head upstairs. I'll read for an hour or so before falling asleep while Lynn spends time with Danny. If he's awake, she'll brush his teeth, massage his feet and sing to him. Sometimes she lies down and falls asleep next to him.
Misti arrives at 11:30 pm and waits until Lynn goes up to bed, then makes Danny's third drink. Throughout the night, Misti turns Danny and moves the pillows. And then at 7 am, it all starts up again.
So that's a typical day here at 2108 Magnolia Avenue. There are other days of course, when we're blessed with visits from Feldenkrais therapists, a Reiki healer, a chiropractor, a massage therapist and a wonderful couple: dentist Ray Padilla and his dental hygienist wife Margaret who cleaned Danny's teeth a few days ago.
Had you told me two years ago that this would be our life, I think I would have panicked, afraid that we'd feel like prisoners in our own home. Had you told me then that Danny would still not be speaking or moving much, I would have been despondent. But two years ago, I couldn't possibly have foreseen the richness of our existence these days. So many people rush about, unsure of their purpose in the world, uncertain of their worth, doubting the worthiness of the pursuits to which they dedicate body and soul. In serving someone I love so much, my life feels fuller and more deeply satisfying than when I was working so hard at my career, trying to assert myself in the madness that is the movie industry. Don't get me wrong, that madness is pretty endemic in most areas of human endeavor, nor do I wish to bite the hand of the movie industry which has made it possible for me dedicate myself to Danny without worrying much over finances. And I'm actually delving back into screenwriting, in all my "spare time".
And while I now and again battle impatience, anxiety and melancholy, the predominant emotions are pride and joy for Danny who projects so much light and love to us on a daily basis and lets us know that yes, indeed, he is "happy".
With love, Jeff
Attached are three photos:
1) Danny's friends Tommy, Brian and Sherif playing music in the wilderness that Billy Goodrum dubbed the "Maguire Bird Sanctuary and Squirrel Hostel".
2) Danny and our friend David Cauble, a chiropractor who has been coming quite a distance on a regular basis to range Danny for over two years now. We were distressed when chest pains recently sent David to the hospital and he had to have a stint placed in his artery, but we're happy to report that he's doing great and is coming to work with Danny today. God bless you, DC.
3) Danny and our niece Katie Adams, taken yesterday, just after Katie returned from an extraordinary business trip to Mumbai, India, where she was working on the design of a billion dollar private residence. (Google "Ambani residence, Mumbai" for details.) She was able to spend some time at Meher Baba's Center a few hundred miles east of Mumbai, and brought back a huge amount of love for Danny and us from our Indian Baba family, which meant more to us than we can say.
PLEASE NOTE: We threw in the towel in our battle with Time-Warner cable, so we've got new email addresses: Jeff's is manonash@verizon.net Lynn's is lynnswan7@verizon.net (note the number 7 after lynnswan) Over the past few months, we've failed to receive a bunch of emails from friends and many emails we sent got lost. If you wrote expecting a reply but did not receive one, please resend your email.
Dear friends and family,
Today, like most days, I came downstairs around 7 am and found Danny sleeping comfortably, with Misti sitting beside him. Lately, he's been moving a lot at night, stretching his limbs and sliding down in his bed -- his head is kept elevated because he continues to get food and water throughout the night via his feeding tube. So, first thing each day, we pull him up, then turn him and check for any pressure spots. He often moans in slight annoyance at being rudely awakened in this fashion.
Next we place pillows on one side or the other of his body, changing them every two hours to prevent sores.
When Misti leaves for the day and Danny goes back to sleep, I head to the backyard where a couple of amiable squirrels wait for me to set out a pile of nuts and a little pine box with a hinged lid that they lift to get at sunflower seeds, peanuts and, much to Lynn's consternation, raw almonds. Lynn's not the only one who finds the almonds extravagant, but then, we don't indulge ourselves much these days, so why not spoil the squirrels, some of whom eat the nuts out of my hand? Besides, they entertain Danny no end when he's sitting the backyard sun.
A pair of bird feeders and several finch socks full of thistle seeds have made our yard a very popular eatery for hundreds of gregarious sparrows, chickadees, finches, buntings, a quartet of erudite crows and, alas, a few dozen dim-witted pigeons. We've also had occasional sightings of hawks, falcons and owls. And other mammals like raccoons, opossums and the neighbor's cat who is shooed off when she comes in search of a bird for lunch. There used to be plenty of rats before the owls and hawks became regular habitus.
All this wildlife is crammed into a little fenced-in suburban square measuring about 28 by 28 feet. And I could have sworn I found moose tracks the other day--which reminds me of the time Danny was about four and we were driving from Boston to my mom's place in New Hampshire and we excitedly pointed out the "Moose Crossing" sign on the highway to him. And Danny thought a moment and then asked, "How do the moose know to cross there?"
After setting out the backyard breakfast nosh, I go to the kitchen and make Danny's morning drink. Since we stopped giving him the canned "sludge", he's done much better, sleeping throughout the night, with none of the sweats that used to plague him. The canned supplement, like so much food bought and sold in the U.S. these days, is designed for shelf-life first and nutrition second. It's great for keeping patients alive, not so good for keeping them well. The drink we give him these days has about thirty ingredients, including protein powder; complex carbohydrate powder; olive, flax and fish oils for calories and omega-3 fatty acids; enzymes; amino acids and other stuff.
Given all this, and the fact that Danny doesn't consume sugar, wheat, dairy or alcohol, he's probably the healthiest person I know.
Around 9 am each day, while Danny's food drips from the feeding machine into the tube connected to his stomach, I get to some emails and/or bills. If he wakes, I read him the sports section or one of several books we're in the middle of. It's an eclectic reading list these days: biographies of the late great punk-rocker Joe Strummer and Indian master Meher Baba; the Hindu epic "The Ramayana"; short stories by Irish writer Padraic OConnaire; and a book of Islamic children's stories. In the afternoons, Lynn often reads the Harry Potter books to Danny. I think they're on the fifth book by now.
Lynn, who stays up at night with Danny until 1 am or later, comes downstairs about 10 am, kisses her boy (and her man) and consumes her morning fuel: a pot of Bailey's Irish tea, strong enough to subdue a banshee.
Once Lynn has been activated, it's time for the business at hand. Every other day is shower day. We used to face this activity with dread, but we've now got it down to a quick stress-free routine. We set Danny on a nylon sling and use the power lift to raise him and roll him into the bathroom. There, he sits in the sling beneath the stream of water while I shave him and bathe his body, then call for Lynn who comes in to shampoo his hair and wash his face. When he's done, we wheel him to the bed, dry him carefully and roll him off the sling and plastic tablecloth used to keep the bed dry. After applying powders and lotions, Lynn blow-dries his hair while I dry off the lift and bathroom floor.
We let him rest for a bit as he usually wants to sleep after a shower, then we get him dressed and, using a second, thicker sling, we lift him up out of bed again. From there, we'll often go to the tilt table where Danny is strapped down and cranked up into a near- vertical position. He'll stay there for an hour or so, while I sit at his feet to make sure his ankles don't buckle while they bear weight.
Most afternoons we bring Danny out into the yard to soak up some vitamin D in the sunshine while he sleeps, watches the wildlife cavort or listens to us read.
Before or after going outdoors, we set up the therapy table and hoist him onto it for an hour's workout. With me behind him and Lynn at his feet (and often with the assistance of a friend of a friend or two) we do some initial stretching. Then we'll have him sit up on his own, without assistance, for a minute or two while leaning forward. Next I ask him to lean back until he falls against me. To do this he has to push up on his arms, straighten his back and raise his head. A lot of work--he couldn't do it six months ago but now he accomplishes it daily.
We've recently been holding Danny's hands and slowly moving them to touch his nose, mouth, ears and chin, narrating each movement to him. Because of the tone in his limbs (tightness that comes and goes), these movements are sometimes difficult but he's seems to be getting more flexible. Week before last, Lynn asked him to lift his hand by himself and touch his nose. It took a long long time--his hand moved millimeter by millimeter while we cheered him on--until finally he touched. Pretty incredible to behold.
He's still doing the tough math problems, knocking over plastic cones, hitting notes on his keyboard and playing blackjack with friends. Last week Lynn asked Danny who he favored for president, writing "Hilary Clinton", "Barack Obama" and "?" (we told him this last choice meant either someone else or "don't care"). He moved pretty quickly to touch Obama, and repeated the gesture when I reset his hand and asked again.
A few weeks ago he developed a pretty bad rash on his legs that had us worried. Getting him up on the table, I laid the alphabet board on his lap and asked him for a message to ease mom and dad's concern about the rash. He spelled out "I LOVE YOU". I then asked him if he was happy and he touched "YES". The rash has since cleared up.
Most days, after therapy, we lay Danny down on his back and I range his limbs for an hour, slowly bending his legs, arms and hands. When we do this to music, he seems to be more flexible and, I'd have to say, enthusiastic.
Lynn and I will often play music and move his arms as if he were playing guitar or drum solos. In the last month, I've been able to open his right hand more and more. It had always been clenched before.
By around 5 pm, Danny is in his wheelchair, often in front of the television where we watch sports when there's a good game on (these days it's the baseball playoffs). By this time he's ready for his second feeding of the day. Along about 8 pm, we move him back to his bed where he loves watching silent movie comedies (Chaplin, Keaton, Laurel & Hardy) on a computer. Silent movies are good because he'll drift off to sleep undisturbed by noisy dialogue or sound effects. He watches a lot of Meher Baba videos as well.
After getting Danny to bed, Lynn and I drop ourselves in front of the TV, usually to watch a movie. Each night at ten pm, we join hands with Danny to say Meher Baba's "Beloved God" prayer before I head upstairs. I'll read for an hour or so before falling asleep while Lynn spends time with Danny. If he's awake, she'll brush his teeth, massage his feet and sing to him. Sometimes she lies down and falls asleep next to him.
Misti arrives at 11:30 pm and waits until Lynn goes up to bed, then makes Danny's third drink. Throughout the night, Misti turns Danny and moves the pillows. And then at 7 am, it all starts up again.
So that's a typical day here at 2108 Magnolia Avenue. There are other days of course, when we're blessed with visits from Feldenkrais therapists, a Reiki healer, a chiropractor, a massage therapist and a wonderful couple: dentist Ray Padilla and his dental hygienist wife Margaret who cleaned Danny's teeth a few days ago.
Had you told me two years ago that this would be our life, I think I would have panicked, afraid that we'd feel like prisoners in our own home. Had you told me then that Danny would still not be speaking or moving much, I would have been despondent. But two years ago, I couldn't possibly have foreseen the richness of our existence these days. So many people rush about, unsure of their purpose in the world, uncertain of their worth, doubting the worthiness of the pursuits to which they dedicate body and soul. In serving someone I love so much, my life feels fuller and more deeply satisfying than when I was working so hard at my career, trying to assert myself in the madness that is the movie industry. Don't get me wrong, that madness is pretty endemic in most areas of human endeavor, nor do I wish to bite the hand of the movie industry which has made it possible for me dedicate myself to Danny without worrying much over finances. And I'm actually delving back into screenwriting, in all my "spare time".
And while I now and again battle impatience, anxiety and melancholy, the predominant emotions are pride and joy for Danny who projects so much light and love to us on a daily basis and lets us know that yes, indeed, he is "happy".
With love, Jeff
Attached are three photos:
1) Danny's friends Tommy, Brian and Sherif playing music in the wilderness that Billy Goodrum dubbed the "Maguire Bird Sanctuary and Squirrel Hostel".
2) Danny and our friend David Cauble, a chiropractor who has been coming quite a distance on a regular basis to range Danny for over two years now. We were distressed when chest pains recently sent David to the hospital and he had to have a stint placed in his artery, but we're happy to report that he's doing great and is coming to work with Danny today. God bless you, DC.
3) Danny and our niece Katie Adams, taken yesterday, just after Katie returned from an extraordinary business trip to Mumbai, India, where she was working on the design of a billion dollar private residence. (Google "Ambani residence, Mumbai" for details.) She was able to spend some time at Meher Baba's Center a few hundred miles east of Mumbai, and brought back a huge amount of love for Danny and us from our Indian Baba family, which meant more to us than we can say.
"The finest thing we can experience is the mysterious. It is the fundamental emotion which stands at the cradle of true art and true science. He who does not know it and can no longer wonder, no longer feel amazement, is as good as dead, a snuffed-out candle." - Albert Einstein
"Through darkness to light, through suffering to happiness, through chaos to harmony will be the end of the journey. All suffering has an end. Spiritual happiness has no end. It is perennial." - Meher Baba
"Through darkness to light, through suffering to happiness, through chaos to harmony will be the end of the journey. All suffering has an end. Spiritual happiness has no end. It is perennial." - Meher Baba
