This update is for August 16, 2007
Dear friends and family,
So much to report on since the last update. I'll start with the big event last weekend: Andy and Tricia were married under a beautiful California Live Oak tree, alongside a waterfall, in the Santa Monica Mountains above Malibu. Last fall we had asked Danny if he was going to attend the wedding and he touched "YES" on his board and he was true to his word Saturday.
We drove off in Danny's van at 3:30 pm and didn't get back home until after midnight and Danny did great. He slept now and then but for the most part he was alert, taking it all in.
Andy's stepfather (yours truly) had been sworn in as a Deputy Commissioner of Civil Marriage For A Day (a quirky California thing) and performed the ceremony, hopefully striking the right balance between light-heartedness and solemnity. Tricia's father, Jack Hastings, and her stepmother Janet have become great friends of ours and so the whole event had a relaxed air about it. All the parents and step-parents were present and carried along on the wave of love and good cheer that Tricia and Andy radiated. Tricia was the most beautiful bride I've seen since 1984, when I got married. I'll attach a photo to this email.
While the guests were arriving and settling in, Danny's old bandmates, Sherif, Brian and Tommy, played acoustic guitars. I got choked up when they played one of the mellow songs that Danny and Sherif wrote and performed.
During the ceremony I spoke of how Tricia, who has felt like a member of the family from the first day we met her, had supported us so lovingly in our difficult time. I also said how happy we all were to have Danny there. I explained that while Danny could not communicate in his wheelchair, he could understand everything said to him so everyone should feel free to come over and say hello to him. He was the recipient of lots of love and good wishes and by the time he left had lipstick marks on both cheeks.
Danny was also referenced in several of the toasts that night. Andy made a speech in which he remembered telling Danny back in the ICU that when he made it out of there he would be his best man, and that although Daniel Stevenson (the same Dr. Dan we call when Danny needs medical attention) was subbing for him, Danny was the best man for miles around.
The week before we had asked Danny if he had a message for us to give Andy and Tricia on their wedding day. He spelled out on his board "I LOVE YOU". We took a photo of Danny with the board and, during the wedding toasts, Lynn presented it to the newlyweds as Danny's toast while tears flowed like the evening's wine.
Two days after the wedding, Danny was back on the therapy table with my nephew Eruch and his wife Cory helping. Danny rapidly spelled out "ERUCH IS WONDERFUL", practically tossing himself toward the letters furthest from his reach. He also solved this math problem: (52 x 17) - 906 a) 32 b) -32 c) -22 d) 12
A few weeks back he spelled out "As it was is ever will stay..." We weren't sure what that meant but I found myself thinking of the Christian prayer that goes, "Glory be to the Father and to the Son and to the Holy Spirit, as it was in the beginning, is now, and ever shall be, world without end. Amen." I emailed our friend Bhau about this and he wrote back, "That means God Is, and there is no past and no future, and except God, there is none. It is illusion which creates the dream, and we think that dream life is the life."
On another front, we took Danny to a holistic M.D. in West L.A. named Hans Gruenn who ran a battery of tests and was very pleased by Danny's robust health. Back when we were at CareMeridian we could never get Danny's red blood cell count up and worried that he was anemic, but now he's in good shape. One test showed that, like a great many people, he is indeed allergic to soy. Fortunately, since we switched to whey and egg protein he hasn't had the stomach pain that bugged him for nearly a year.
I want to thank Gordon Santee who, over the past 18 months, has become our nutritional guru. Gordon, who's in his sixties, has set a bunch of world weight-lifting records this year and works at the Lindberg Nutrition store on Artesia Blvd. here in Manhattan Beach. We've found that he's more knowledgeable about nutrition than most doctors, including perhaps Dr. Edwards, our nutritional consultant during the CareMeridian days with whom we've lost contact. Gordon has spent hours determining which supplements would be most helpful and cost-effective for Danny. He's always available for free consultations so if you live in the area and have any nutritional concerns, drop in and ask for him. Just one more member of Team Danny for whom we are so grateful.
One other note: many of you sent us information and links about the man who had an electrode implanted in his brain to jumpstart his speech process. We will be looking into this closely and watching the new study that will involve 12 subjects who are either in comas or minimally-conscious. We've learned to approach this sort of procedure with caution since it's a risky any time the skull is opened up. Also, Danny is much further along than the man who was helped by the electrode and would have more to lose if things went awry. Finally, we've learned through some past setbacks that some procedures and drug treatments may produce a big initial improvement only to pendulum the subject back so he is worse off than before. So we'll look into all the pros and cons and consult carefully with Maggie and Penny before trying anything on Danny. At the same time, we want to thank everyone who sends us information. We're always glad to read about anything that comes along, no matter how experimental and we're always appreciative to know that so many people are thinking of Danny and us.
Two days ago, I again wrote on Danny's board, "Are you happy?" We didn't read the question to him. We just let him look at it and watched as he quickly moved his hand to "YES". That's the most important thing, isn't it?
Much love, Jeff
p.s. Here are two readings I read as part of the wedding ceremony:
"It is a strange but simple secret, known to the wisdom of all ages, that every act of selfless devotion, of sympathy and love, however slight, makes us richer, whereas every striving for possessions and power robs us and makes us poorer. The sages of India taught this, then the wise Greeks, and then Jesus. It has been known and taught by thousands of wise men and poets, whose works have outlived their time, whereas the rich men and kings of their day are forgotten. Your preference may lie with Jesus, or Buddha, or Mohammed, or with Schiller or Spinoza, but in all of them you will find the message that happiness cannot come through possessions or power or knowledge. Happiness comes through love alone." Herman Hesse (one of Andy's favorite authors) The quote was slightly altered by me for the occasion.
And:
"Married life, when inspired by lofty idealism, can become a medium through which two souls offer their united love and service to the whole family of humanity." - Meher Baba This quote seemed especially appropriate for the joining of two incredibly dedicated teachers who worked in multi-ethnic high schools, Andy in Culver City and Tricia in South Central L.A.
Attached are three photos from the wedding featuring
1) Andy and Tricia
2) Andy, Danny, Lynn and me.
3) Tricia and her bridesmaids, including Danny's cousin Katie on the far left beside Tricia's sister Kristin who was maid-of-honor.
Dear friends and family,
So much to report on since the last update. I'll start with the big event last weekend: Andy and Tricia were married under a beautiful California Live Oak tree, alongside a waterfall, in the Santa Monica Mountains above Malibu. Last fall we had asked Danny if he was going to attend the wedding and he touched "YES" on his board and he was true to his word Saturday.
We drove off in Danny's van at 3:30 pm and didn't get back home until after midnight and Danny did great. He slept now and then but for the most part he was alert, taking it all in.
Andy's stepfather (yours truly) had been sworn in as a Deputy Commissioner of Civil Marriage For A Day (a quirky California thing) and performed the ceremony, hopefully striking the right balance between light-heartedness and solemnity. Tricia's father, Jack Hastings, and her stepmother Janet have become great friends of ours and so the whole event had a relaxed air about it. All the parents and step-parents were present and carried along on the wave of love and good cheer that Tricia and Andy radiated. Tricia was the most beautiful bride I've seen since 1984, when I got married. I'll attach a photo to this email.
While the guests were arriving and settling in, Danny's old bandmates, Sherif, Brian and Tommy, played acoustic guitars. I got choked up when they played one of the mellow songs that Danny and Sherif wrote and performed.
During the ceremony I spoke of how Tricia, who has felt like a member of the family from the first day we met her, had supported us so lovingly in our difficult time. I also said how happy we all were to have Danny there. I explained that while Danny could not communicate in his wheelchair, he could understand everything said to him so everyone should feel free to come over and say hello to him. He was the recipient of lots of love and good wishes and by the time he left had lipstick marks on both cheeks.
Danny was also referenced in several of the toasts that night. Andy made a speech in which he remembered telling Danny back in the ICU that when he made it out of there he would be his best man, and that although Daniel Stevenson (the same Dr. Dan we call when Danny needs medical attention) was subbing for him, Danny was the best man for miles around.
The week before we had asked Danny if he had a message for us to give Andy and Tricia on their wedding day. He spelled out on his board "I LOVE YOU". We took a photo of Danny with the board and, during the wedding toasts, Lynn presented it to the newlyweds as Danny's toast while tears flowed like the evening's wine.
Two days after the wedding, Danny was back on the therapy table with my nephew Eruch and his wife Cory helping. Danny rapidly spelled out "ERUCH IS WONDERFUL", practically tossing himself toward the letters furthest from his reach. He also solved this math problem: (52 x 17) - 906 a) 32 b) -32 c) -22 d) 12
A few weeks back he spelled out "As it was is ever will stay..." We weren't sure what that meant but I found myself thinking of the Christian prayer that goes, "Glory be to the Father and to the Son and to the Holy Spirit, as it was in the beginning, is now, and ever shall be, world without end. Amen." I emailed our friend Bhau about this and he wrote back, "That means God Is, and there is no past and no future, and except God, there is none. It is illusion which creates the dream, and we think that dream life is the life."
On another front, we took Danny to a holistic M.D. in West L.A. named Hans Gruenn who ran a battery of tests and was very pleased by Danny's robust health. Back when we were at CareMeridian we could never get Danny's red blood cell count up and worried that he was anemic, but now he's in good shape. One test showed that, like a great many people, he is indeed allergic to soy. Fortunately, since we switched to whey and egg protein he hasn't had the stomach pain that bugged him for nearly a year.
I want to thank Gordon Santee who, over the past 18 months, has become our nutritional guru. Gordon, who's in his sixties, has set a bunch of world weight-lifting records this year and works at the Lindberg Nutrition store on Artesia Blvd. here in Manhattan Beach. We've found that he's more knowledgeable about nutrition than most doctors, including perhaps Dr. Edwards, our nutritional consultant during the CareMeridian days with whom we've lost contact. Gordon has spent hours determining which supplements would be most helpful and cost-effective for Danny. He's always available for free consultations so if you live in the area and have any nutritional concerns, drop in and ask for him. Just one more member of Team Danny for whom we are so grateful.
One other note: many of you sent us information and links about the man who had an electrode implanted in his brain to jumpstart his speech process. We will be looking into this closely and watching the new study that will involve 12 subjects who are either in comas or minimally-conscious. We've learned to approach this sort of procedure with caution since it's a risky any time the skull is opened up. Also, Danny is much further along than the man who was helped by the electrode and would have more to lose if things went awry. Finally, we've learned through some past setbacks that some procedures and drug treatments may produce a big initial improvement only to pendulum the subject back so he is worse off than before. So we'll look into all the pros and cons and consult carefully with Maggie and Penny before trying anything on Danny. At the same time, we want to thank everyone who sends us information. We're always glad to read about anything that comes along, no matter how experimental and we're always appreciative to know that so many people are thinking of Danny and us.
Two days ago, I again wrote on Danny's board, "Are you happy?" We didn't read the question to him. We just let him look at it and watched as he quickly moved his hand to "YES". That's the most important thing, isn't it?
Much love, Jeff
p.s. Here are two readings I read as part of the wedding ceremony:
"It is a strange but simple secret, known to the wisdom of all ages, that every act of selfless devotion, of sympathy and love, however slight, makes us richer, whereas every striving for possessions and power robs us and makes us poorer. The sages of India taught this, then the wise Greeks, and then Jesus. It has been known and taught by thousands of wise men and poets, whose works have outlived their time, whereas the rich men and kings of their day are forgotten. Your preference may lie with Jesus, or Buddha, or Mohammed, or with Schiller or Spinoza, but in all of them you will find the message that happiness cannot come through possessions or power or knowledge. Happiness comes through love alone." Herman Hesse (one of Andy's favorite authors) The quote was slightly altered by me for the occasion.
And:
"Married life, when inspired by lofty idealism, can become a medium through which two souls offer their united love and service to the whole family of humanity." - Meher Baba This quote seemed especially appropriate for the joining of two incredibly dedicated teachers who worked in multi-ethnic high schools, Andy in Culver City and Tricia in South Central L.A.
Attached are three photos from the wedding featuring
1) Andy and Tricia
2) Andy, Danny, Lynn and me.
3) Tricia and her bridesmaids, including Danny's cousin Katie on the far left beside Tricia's sister Kristin who was maid-of-honor.
