"Suddenness Wonderment"

Photo above by: http://www.flickr.com/photos/quietdelusions/





When Daniel was about ten, I bought an item of jewelry on Ebay from China. I thought I might keep it, or perhaps give it to someone as a gift. If it were genuine it would certainly have been a very good buy. The ad was clearly written by someone in China who had limited experience in speaking English, a lot like my facility in Russian. In the Ebay ad the seller said that with every so many dollar purchase, he would include "Suddenness Wonderment". I was intrigued. I wanted the jewelry item, but I would love to receive some "suddenness wonderment" whatever it was. The kids and I discussed for awhile what suddenness wonderment could be. I think Daniel thought it should be a marvelous computer game of some kind! I had almost forgotten about it when the small package with such interesting labels finally came in the mail. I opened the package, and it was a rather nice ring. It had been a good buy, and was in a lovely wooden custom made box. I looked inside for the suddenness wonderment. I am not sure what it was or if the man actually included it in the package.
Daniel and I, and now the other kids and I, often joke about the quest for suddenness wonderment, whatever it is. I can tell you after contemplating this question on and off for years now, that no piece of jewelry, no car, no pastry, no thing, can give us the ever elusive suddenness wonderment. However, I believe I caught a glimpse of it once watching the first egg hatch when Daniel's rooster Ross and his hen, had chicks and we aided them by placing some of their eggs in an incubator. I believe I had it when I heard Daniel's voice in the past couple of years, waking me from a sound sleep. I believe I have felt it when I watched a tornadic thunderstorm earlier in the year. Suddenness wonderment, I think, is a thing which comes from God, and is not something human beings alone can orchestrate very well. Even the talent shown when we hear a musical performance which leaves us in awe, is talent given by God. Whatever true suddenness wonderment is, I wish you luck in finding some, and in keeping it.
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Update: One of my children e-mailed me upon seeing this blog entry to tell me that "suddenness wonderment" is a phrase derived from "Chinglish". "Chinglish" results when a person who has composed a grammatically correct entry for the internet in Chinese, places it in an internet translator. The basic idea may well come across, but certain words and phrases may be misused or even created. His thinking is that the seller of the jewels meant to say, "Great surprize" rather than "Suddenness Wonderment". I think I am sticking with the Suddenness Wonderment. I could use all the positive phrases possible, even if the phrase does have computerized origins.

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Stacy Marie

Simon Brint

These are scenes from Somerset England, where Simon Brint lived


Simon Brint was a British comedic actor, musician, and the composer for the music for a number of British well known television series. Being American, I was less familiar with his comedic works, but I have been very aware of his varied music. He lived in Somerset, England, and created music for television from a studio located in Islington, in the London area. He was a good friend of Lenny Henry, the star of BBC's "Chef" series, and many others. Simon was also the composer who wrote all the music, the opening music as well as the entire score of Daniel's favorite "Monarch of the Glen" television series. Simon's death was announced about June 20, 2011, by his friend Lenny Henry, and confirmed by his representative Maureen Vincent. For one so prolific in his music and his comedy, very little is written about him personally, and formal obituaries have been missing from most places one might expect to see them. In keeping with Simon's apparent wish for privacy, I will simply extend our family's condolences to his family and friends. We also encourage those who manage Simon's estate, and BBC to consider re-releasing the ever popular musical score to "The Monarch of the Glen" series. He also composed music for Daniel's ever favorite "Fry and Laurie". Daniel knew all of the songs from the series.

Simon's recorded works, such as the "Monarch of the Glen" album should be marketed again and should be enjoyed.




These are samples of some of Simon Brint's work:
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Simon's "Composer" website remains up, and you can listen to a broader range of music he has penned, than I have provided here.

http://www.simonbrint.com


His musical works will be missed. A giant gap in the field of musical scores now exists, as the man was truly a genius. The music in Heaven must really be something. John Barry and Simon Brint are composing it now.

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UPDATE:

Finally, there is a fitting and loving obituary from the UK National News with no specific writer given. They suggest that Simon's passing was a suicide.

An excerpt of the obituary follows:

Simon was born in High Ham, Somerset. His father, Stephen, was from a large working-class family, and had lied about his age to join the army. His mother, Anne Tracey Watts, was the daughter of a high court judge and a former English scholar at St Anne’s College, Oxford. They met in Austria after the second world war, where they were both involved in repatriating former PoWs. When the family moved from south Wales to Kent, Simon, aged 15, decided to stay on alone in Wales, and moved into a B&B near his school. Ostensibly this was to allow him to complete his O-levels, but his band at the time, a very stylish R&B outfit called the Blue Imperials, were also doing very well. A year later, he followed the family to Hythe, where he and his friend, Doug Chandler, persuaded the headteacher at Harvey grammar to excuse them from PE because they were both “physical weaklings with towering intellects” and would be better used preparing for school concerts.

They used their time to visit record shops and to float in and out of various musical projects, most successfully combining a bizarre cover version of Ennio Morricone’s theme from For a Few Dollars More with Granny Takes a Trip by the Purple Gang to create Granny Takes a Few Dollars More. Simon went on to study English literature at Reading University, where he cut an eccentric figure on a Bernini bicycle fitted with a small engine (he never learned to drive). He became the social secretary’s chief arbiter of taste when deciding which bands to bring to the university.

Graduating in 1972, he drifted happily, working in the studio of the artist Anthony Benjamin; playing and recording with the singer and tightrope walker Hermine Demoriane; dressing elephants as mammoths for the 1981 film Quest for Fire; and prop-making – on one occasion, when delivering a prop for Ken Campbell’s 1979 production of The Hitchhiker’s Guide to the Galaxy at the ICA, he was stopped by a policeman who asked what he had in his bag – “the secret of life,” he replied. One of his first film compositions, a series of tape loops, was for a documentary about modern surrealist artists, Chance, History, Art (1980). He also co-wrote, with his longterm collaborator Simon Wallace, the music for the Oscar-winning short A Shocking Accident (1982).

In his personal life, Simon was an exquisite minimalist, and lived in spaces that were always painted several barely perceptibly different shades of grey. But although everything looked clean and empty and ordered, all the cupboards were bursting with stuff, absolutely chock-full of multitrack tapes, gizmos and instruments and millions of bits of recording equipment – perhaps that is a metaphor for the man. But he did have rigorous taste, especially in music – the minute he detected anything mediocre in the emotional integrity of what he was listening to, he became disaffected. Tom Waits was loved, and then suddenly dumped for “trying too hard”.

He was selective with his friendship, too, but if you became his friend, he was very loyal, very good company, very amusing. We did lots of tours together. There is usually a scramble to sit next to the most interesting and open person on a tour bus – and Simon was always that man. He was so civilised and convivial, knew things I never knew, and would introduce me to things I’d never heard or seen: Pina Bausch, Gillian Welch, the Holy Modal Rounders. And he could be deliciously cruel about stuff he didn’t like. That wince that said ,”Oh really, it just won’t do”, and then the trademark flick of his collar.

In 2004, with his old friend David Campbell (the social secretary from his days at Reading), and under the umbrella of Action for Music, Simon started to help unacknowledged musicians in Kenya record their music and get a return for their work. He had an extraordinary ear for talent, and a lot of the bands he chose to help then are the leading musicians playing in Kenya today. In parallel, he worked on Makutano Junction – a TV soap reaching 12 million east African viewers and the region’s biggest show – both as a composer, and a mentor to composers. This was all done from a sea container under an avocado tree in Nairobi that he had converted into a studio.

In 2003, Simon married Amanda Cockerton, and they moved back to Somerset. My daughter, Simon’s goddaughter, once remarked: “Everything thing about Simon is grey, except Amanda.” He was the gentlest, kindest man, with extraordinary taste and a sublime, quirky talent that he was never really confident of. He is survived by Amanda, and four brothers.

• Simon Tracey Brint, composer and comedian, born 26 September 1950; died 29 May 2011
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UPDATE:   May 12, 2013

Simon Brint is very much missed by his brothers, his other family, and those who simply saw the genius of his music.  My very best wishes to the brother who contacted me regarding this post.

Morning Visit

This morning I got up around five am, checked e-mail, spoke to my husband, and around six, I apparently fell back to sleep. As I slept I had the following dream. Stephanie and Adam were away, but Daniel was next to me sitting in a wheelchair talking normally. We were both watching Matthew do some type of sport. We were following Matthew and watching him over lots of green grassed hilly fields. Daniel conveyed several points in the dream. One was that the way things are, his being away from us in flesh, had to be. Another was that he will always be with us while we finish our journey here. Another was that he will always find a way to let us know that he is. Then, he told me that if he had been resuscitated that day, then he would have been in a wheelchair, and he said he would not have liked to have had to have me push him around all the time throughout life. I said I would have taken him here any way I could have gotten him. We laughed and I kissed him on the cheek,and then the dream was over. I woke up groggy, but feeling as if Daniel did come to our home on Earth to touch base with me.
This morning when I checked the statistics and keywords used on internet searches in the past 24 hours which arrived at this blog, someone has run a nickname I had for Daniel, which no one but the family knows and is not on this blog. The kids all say they did not search this name. I wonder ?
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This is an eight year old gospel singer, Rhema Marvanne, whose mother resides in Heaven.

A Chance Meeting

I have always been really blessed by having really good friends. I have not always cultivated large numbers of friends, but I have always had dear and very loyal and devoted friends. Although I think I have been shaped by my parents, and my devotion to God, I think that many times, I made the right decisions and chose the best directions because I had friends who could clearly set decisions out for me. There have been dear friends I kept from highschool, dear friends who remain from college days, and friends I made when our children were small. It is said that as we age, we often don't find the same level of closeness with new friends that we did when we were young, but I don't know that this really HAS to be true. Perhaps we are simply less open to new friendships as we move through life.
Yesterday, I took Matt into the city for a planned trip to Barnes and Noble and to lunch. (I really try to know what's going on with all of the kids, and lunch by themselves is often a great way to find out.) When we were nearly finished, I saw a dear friend of mine from across the restaurant. She joined us, and we talked for a couple of hours. For purposes of this blog I will call her Carole. Carole and I met some years ago, when my daughter and I happened to go to her pre-moving yard sale, deep in the country, but fairly near our original farm. Carole had one of those rare yard sales where solidly everything was really lovely quality and in good taste. That day I regretted my habit of not carrying very much cash. Stephanie, Adam, and I returned to the sale several times that weekend. We learned that Carole was an accomplished architect who had travelled a great deal, but that now she was pretty devoted to raising her children, who were in college, as Adam and Stephanie were. I believe that week that she met all of our kids. It was one of those rare times where I met someone who shared my sense of humor and my views on most things, although Carole was decidedly more hip than I. She embraced modern technology and modern culture more than I. I had also thought she was perhaps younger than I, but she inspires me, as we are about the same age. Carole and I made friends just in time for her to move out of state on business. In 2008, she and her family moved back. She was one of the friends who listened so well and was so supportive when Daniel passed suddenly. In a sense, running into her in Daniel's favorite restaurant was a gift from both God, and also Daniel.....and perhaps even my Dad. It was a reminder that all of our friendships and relationships are connected through a thread with God, and that we are not left out here on this mission, on islands, although it may seem so, at times.
Even Matthew enjoyed Carole's stories of places she had visited recently, and of TSA, and things people in airports had said to her. She approaches travel with such openness, whereas I approach it will trepidation, as something I must do to get where I am going, not just a journey in itself. God is good to me in that He provides examples like Carole, who show me more of the direction in which I should go.

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This is one of my favorite contemporary Christian songwriters Mark Shultz, singing a song with excellent harmony help by Ginny Owens. Daniel heard this song a fair bit in our home.

Have You Seen Lauren Spierer ?

This is Robert and Charlene Spierer, Lauren's parents.
Photo taken by: Peter Stevenson,




LAUREN SPIERER IS KNOWN TO HAVE LONG QT SYNDROME and is a 20 year old college student in Bloomington, Indiana. Diminutive Lauren is 4 feet 11 inches tall, and weighs only 100 pounds. She has been missing since early Friday morning on June 2. She was last seen at 4:30 am. Lauren is originally from Edgemont, NY, where her family still lives.
Anyone with information should call"

Bloomington Police Department at (812) 339-4477.

For more information: This is the Spierer Family Search Website:

http://www.findlauren.com/

Sometimes We Win...Sometimes There Are Miracles

Hermitage High School....The site of this miracle



My other children would think this blog can be a negative place, as we so often focus on the children and teens lost to different varieties of sudden cardiac death. I am really pleased to bring some good news from our home state of Virginia.

This week, a student at Hermitage High School in the Richmond, Virginia area, Kathryn Hardy, had no prior known cardiac issues when she entered the school last Tuesday and experienced a cardiac arrest. Kathryn entered the school that morning, and was found face down in a stairway by a physical education teacher. Unlike many Virginia high schools, Hermitage had two school nurses AND and AED. They were able to provide CPR and AED assistance in order to resuscitate Kathryn before the ambulance arrived. Kathryn was able to receive an implanted pacemaker at St. Mary's Hospital in Richmond, shortly thereafter.
Interestingly, like many sudden cardiac arrests in children and teens, Kathryn appeared to have a seizure, but when the nurses realized she was in a full arrest, they began CPR and sent for the AED. Kathryn responded to a SECOND jolt from the AED which according to the Richmond Times Dispatch, was delivered at the ten minute mark from the actual arrest. Kathryn has no memory of the actual experience, yet returned to the school looking healthy and happy this week to thank everyone who was involved in saving her life.
I could not be more pleased that Kathryn is ok and will be fine. From each one of these events there is much to be learned. Kathryn is fine despite the fact that her loss of consciousness, and cardiac arrest continued longer than we would normally like to see, and responded only to a second jolt from the defibrillator. She also experienced a seizure, just as I believe Daniel did, simaltaneously with his cardiac arrest. This should cause many physicians to take a second look at children they believe have seizures, and who may have a normal EEG. Perhaps some childhood seizures are a rehearsal for a serious arrhythmia, more often than we think.
We have lost so many children worldwide from sudden cardiac death or from sudden unexplained death in childhood. It's so good to hear about one that was called back to her family, with good CPR and an AED. I send prayers and good wishes to their family. I am sure they know how lucky they really are.

High Hopes For Medical Informatics

computer mainframes


One of the things that has been so frustrating in the long term about what happened to Daniel is that it appears not to be as rare as was once believed. Although we have no clearly defined indications of Long QT Syndrome, pathologists who analyzed the autopsy data, our family history of older members with arrhythmic disorders, and the exact occurances in the moments prior to Daniel's passing, have decided upon this diagnosis as a diagnosis of exclusion. After all, Long QT Syndrome is a functional disorder, not necessarily a structural one. This means not only that we have to make sense of, and live with the loss of our own youngest son, but we hear continually of other children who passed suddenly either of Long QT, Sudden Cardiac Death Syndrome, undiagnosed Wolff-Parkinson-White Syndrome, Brugada Syndrome, Dilated Cardiomyopathy, Viral Myocarditis, Sudden Unexplained Death Syndrome, Near Miss SIDS, Viral Cardiomyopathy, Spontaneous Ventricular Tachycardia, Torsade des Pointes, R on T phenomenon, Commotio Cordis, Sudden Arrhythmic Death Syndrome, Coxsackie B myocarditis, and others. The problem is, we are told that these are rare, and yet many of us know at least several families in which a child, young adult, or young parent have suddenly expired, and the family is told that the autopsy is inconclusive or one of these disorders is suspected. There are groups who are tallying the number of children, or teens or young adults who are victims of sudden cardiac death but there is no real consistency. Some statistics include babies, others do not. Some statistics include children over 12, others do not. There are children who die suddenly who are never autopsied who never become part of any of the sudden cardiac death statistics. In addition, where autopsies on children who died suddenly ARE done, there is often surprizing inconsistency. Some include toxicology screens, and others do not. Some include genetic studies looking for Long QT markers and others do not.
It is my hope that soon, medical informatics can help somewhat in this regard. Medical Informatics started badly. The Nazis made medical informatics a priority. They conducted experiments in which the LD50 for human beings was determined. (The LD50 is a determination of the lowest dose of a substance that would cause the death of 50% of the test subjects) The Nazis also used an extensive punch card system which aided them in a medical eugenics program. Since medical knowledge by the Nazis was used to advance a frightening agenda, we can see how many of us dislike the formation of medical databases of any kind and any location. If information on medical histories and genetics are misused, the public worries that a prospective employer could decide that their family history makes them a poor choice for a career position, or that their insurance company may decide that they do not wish to insure someone with a potentially expensive future medical problem as determined by family history. I do understand the reluctance here. However, there may be an advantage here. If we could enter all of the information for each child believed to have experienced a sudden death of uncertain etiology (cause), with all of the particulars, would we be able to data mine and obtain additional directions for study ? For example, if we learned perhaps that children who had prenatal arrhythmias, which disappeared upon birth and cord clamping, experienced sudden cardiac death as teens 30% more often than teens without prenatal arrhythmias, then we could alter current recommendations. Right now, babies with resolving prenatal arrhythmias receive no follow up whatsoever. If we had data which suggested they should, then perhaps we could formulate new guidelines. Daniel was one of those babies. We were told again and again that additional follow up after birth was unnecessary. Well maybe not ! Data mining through a medical informatics database could help us notice a wide range of associations and perhaps commonalities between the children who passed from Earth from these sudden death syndromes, and then perhaps we could intervene sufficiently to save more of them, perhaps even their own siblings, or nieces and nephews yet to be born. Perhaps expanded use of medical informatics is a good idea. Perhaps we could also do a better job of assessing the true incidence of sudden death in children and teens and identifying groups at risk who are as yet unidentified.
In the 1960s Hashimoto's thyroiditis was felt to be a rare disorder in which the body periodically attacked the thyroid gland, ultimately destroying it. By the 1990s, and certainly by 2000, it was recongized to be one of the chief thyroid diseases in North America. It wasn't rare at all ! Perhaps sudden cardiac death is not as rare as you and I have been told either.

Allison Krauss and John Waite "Missing You"
Yes, John Waite was the original artist.

The Timed Release Grief Time Bomb

I pride myself on this blog being as honest a place as possible. It's important that in taking the time to share a windows view of how we go on, how we have survived following Daniel's passing, that we look at the pitfalls as well as the triumphs. In total, I think we have done as well as anyone could when our youngest family member was called to Heaven two and a half years ago, with no warning. I had thought that our entire remaining family was doing well for a number of reasons. First, we have been gentle and nurturing with them. We have been understanding. We have each been busy and have found outlets for our energies individually and constructively. We share a common and a living faith. They all seemed to be doing well and moving forward in their lives, and mentioning Daniel appropriately with laughter and happiness, when something is mentioned that reminds us of him. Lastly, James coming to us through adoption was a reminder that life on Earth must go on, and we must swim through the life which remains here and begin new chapters in our lives.
Last night we learned we have some chinks in the armor. What started at dinner on a hot humid evening, as a family meeting where my husband reinforced some of our family and house rules. Things are changing here. As the college graduates begin to get jobs, and the college attendee balances a new job and college, the chores are not being done. The reasonable rents we require from the working kids are not all being paid. There is also some back biting and bickering too. As James makes progress in adapting to our family, our "normal kids" have backslid, and we are seeing much younger behaviors much of which we did not see when they were teenagers. My husband began setting out the law and his observations. Some of the adult kids responded by talking back. The interaction ended with his losing his temper, which probably scared James and certainly scared the cat. It's also a departure for my husband, who is normally pretty even tempered. In short, everyone overreacted, leaving me to wonder what is going on with my formerly healthy family. It did not take long to realize that this is about grief. The kids have moved headlong into the world with the knowledge that life is short and limited. They are coping by being busy and by living lives busy enough for themselves, AND in a sense, for Daniel too. A changing economy and challenges in the workplace do not always help. They resent being reminded that even rational chores still need to be done......WHEREVER they live. Secondly, there IS apparently some resentment of James. He IS special to us. He did become a family member and he carved out his own slot, not Daniel's. They may resent that he is a valued family member, and as the only "child" under 18 here now, he does get some special considerations. Third, last night I realized something after my husband cried afterward. I have had the luxury in the past two and a half years of exploring my sorrow and my grief in terms of journaling, this blog, and my activities with grieving families. He has continued to earn a living and has not had such outlets, even though he has denied needing them. We do go to therapy, but it is therapy designed to support and encourage the placement of James in our home and to anticipate and understand difficulties which ordinarily arise. My husband is apparently not only struggling with missing Daniel, but also with the idea that three of his children have grown and that he can't really talk to them dictatorially as he might have when they were younger. Certainly, he must convey that this is our home, and that we are not a place to be used as a flop house, while being disconnected from the rest of the family who lives here. They have responsibilities. On the other hand, it must be acknowledged that they have grown up. Sadly, I think my husband feels like he missed a part of their growing up. He is apparently dealing with Daniel's loss and feeling that his children grew up and became adults while he wasn't looking. How we can both feel and be fairly young, and have twenty-something children is not only unfathomable to him, but sometimes also to me. It seems that grief is something large, that we incur, and we must "pay through" it somehow. For each person, the "bill" is different. For me, it has been a combination of tears, dreams, and good works with families who have lost children to similar issues. It may not be the same for my husband. How he "pays through" his own grief will be different for him, and for each member of our family. There is also anger, and it is not necessarily directed at each other. There may be anger that they remain here to live a life while Daniel was somehow spared. Other times, they may feel guilty for surviving their serious chronic illnesses, while Daniel succumbed to something that was completely unknown to us. Sometimes shifting gears in this life is so difficult So, we have some work to do here. I'll let you know how it goes.

Remembering Another Family's Son Lost to a Sudden and Unclear Death

Andrew Helgeson




Today we remember another family who lost a son suddenly.


Andrew Helgeson


Andrew died at home on the night of May 25, 2005, at age 18, one week before his high school graduation. Andrew was a star lacrosse goalie, 1st Team All-County, a scholar with a full academic scholarship, a newspaper staffer and yearbook editor. He was the recipient of many academic and athletic awards.


At 6’4”, 230 lbs., he was the picture of health, with no symptoms.
Andrew had no health problems and the cause of the arrhythmia is still unknown. Andrew was a lacrosse star at Blair in Maryland and was named Most Valuable Player, Outstanding Senior and 1st Team All-Montgomery County goalie. He was awarded Blair’s All-Around Scholar-Athlete Award for 2005. He was recruited by many college programs and chose to continue his lacrosse career at Fairleigh Dickinson University, where he was awarded a full academic scholarship. Andrew was also the Yearbook Sports Editor and worked on the award-winning Silver Chips newspaper. He performed in school theater productions and independent dance productions. He was a mentor to younger teammates, tutored students in math and physics and served as a soccer referee for 3rd graders. Andrew amassed over 360 hours of community service in his time at Blair. Above all of the activities that he participated in outside of the classroom, Andrew loved working as a camp counselor for six and seven year-olds.



This is a poen written by Andrew Helgeson


"I am" by Andrew
12  January  2004

I am a curious, cautious guy.
I wonder what life will bring.
I hear the sunrise.
I see tomorrow’s destiny.
I am a curious, cautious guy.
I pretend not to care.
I feel fear about what is yet to come.
I touch my crystal ball.
I worry about what I may miss.
I am a curious, cautious guy.
I understand actions have consequences.
I say I will make is fine later.
I dream that I will be successful.
I try to make the wrongs right.
I hope I will end up content.
I am a curious, cautious guy.




For more information: http://www.andrewhelgeson.org/



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Daniel's Favorite Restaurant: PANERA

In 2005,when our family sold the first farm we built, and then were building another, we had to set up small barns for animals on the new farm,while the builder worked on building our new home. So that we had water, some access to comforts, a place to nap, shower, and eat while we were there caring for animals and waiting for various contractors, we placed a recreational vehicle there. Daniel very much enjoyed watching DVDs, and sitting in the RV. Most kids really do like RVs and some form of camping. Often, when we were finished the days chores, we would travel to where we were staying temporarily, and we would eat at Panera, which is clearly Daniel's favorite restaurant. For those of you who have never been, it's a cafe with exceptional sandwiches, salads, and soups, which bakes a variety of breads daily. There is also an attached bakery where varietal crusty breads, bagels, rolls, muffins, and desserts can be purchased to go. They also sell some of their fantastic salad dressings, and they cater your occasion if you wish. The entire place is a cafe which makes its own breads and whose menu is at least partially inspired by simple Italian sandwiches and soups, with an innovative American flair. They are committed to a creative and ever changing seasonal healthy menu, and their treatments of old favorites are tweaked by their own chefs. Add to this a broad menu of drinks, free wifi for your internet needs, and you're all set. There are multiple Panera locations, all over the US and they are all decorated a bit differently. The one nearest us, donates their leftover bread to the local foodbank. Ours plays classical music in the morning, and jazz in the afternoon and evening.
Of course, anywhere which had free and fast wifi caught Daniel's attention. He also loved the food there. His favorite menu item there was "You Pick Two" which allows the customer to pick two of any menu items, soups, salads or sandwiches and receive half of each.. His preferences were a half a bowl of broccoli cheddar soup, with a half a sandwich called Bacon Turkey Bravo, with a piece of baguette, and a Dr. Pepper. He would find a quiet corner with a comfortable chair there, and a table, and plug in his computer. Then someone would watch the computer while he ordered. Then he would work online while eating his soup and baguette. Eventually, he would part from the computer long enough to eat his half Bacon Turkey Bravo sandwich and sip his drink. We used to come in once a week, often with all the kids, during the construction of the new farm. A lot of the staff there became fond of Daniel, who would do both schoolwork and creative endeavors on his computer while he was there. After the house on the farm was complete, Panera became a birthday and celebration location for us. It also helped that Panera branches exist in both of the cities we occasionally visit.
When Daniel passed, I remember going there the week after in an insensible attempt to live normally and to see if he were sitting there, with a computer, intensely working while casually eating soup. The first thing the staff asked us was, "Where is Daniel ?" I was not up to comforting the people who cried when they heard what had happened.
We still go to Panera when we eat out. When they take the order and ask for the name for the order, we always say "Daniel" and we sense that somehow, he enjoys the meal with us. I hope that somewhere in Heaven, there is a Panera where Daniel takes a break, watches us and does his work there on whatever computer God issues.We really miss you Daniel, but we will never stop remembering and doing the things we did together that we so enjoyed.


Song performed by Jim Brickman and Roch Voisine

Interesting Information on Long QT Syndrome

The informative and well written piece which follows was obtained from:

http://www.txai.org/edu/irregular/ventricular_tachyarrhythmias.htm


It is wholly the educational work of The Texas Arrhythmia Institute,in Houston.


Long QT syndrome (LQTS) has created great interest because of its unique and dramatic manifestation. This familial disorder was recognized more than 100 years ago. In 1856 a deaf girl was reported to have collapsed and died while being publicly admonished at school. Previously two of her brothers had died suddenly during under similar stressful situations.
In 1975 A. Jervell and F. Lange-Nielson provided the first complete description of LQTS, a syndrome of deafness and sudden cardiac death and associated with a characteristic ECG abnormality (prolonged Q-T interval). The cardiac arrest in these victims, mostly children and teenagers is due to ventricular tachyarrhythmia. Most episodes of arrhythmias are usually self-terminating, even when they provoke a transient loss of consciousness (syncope). However, when the episodes are prolonged, circulatory failure due to arrhythmia may result in sudden death.
LQTS was previously classified into a non-familial sporadic form and two hereditary types, with deafness (Jervell and Lange-Nielson syndrome, autosomal recessive) and without deafness (Romano Ward syndrome, autosomal dominant). In 1991 M. T. Keating et al. demonstrated linkage between LQTS and chromosome 11. Subsequent genetic studies showed that different LQTS syndromes were due to mutations of different genes (at least 5) localized on chromosomes 3,4,7 & 11. These genes are responsible for the synthesis (encoding) of membrane channel proteins that play a pivotal role in the cellular metabolism and regulation of the electric activity of cardiac cells. LQTSs have thus been recognized as cardiac membrane channel diseases ("channelopathies") that invite syncope and SCD due to ventricular arrhythmias.
The two criteria for diagnosis of LQTS are unexplained transient loss of consciousness and an abnormal ECG. Ventricular arrhythmias and syncope are often provoked by increases in heart rate in response to exercise or emotion. Because such responses involve changes in the autonomic neural (non-voluntary) regulation of the heart, it was believed that LQTS resulted from some imbalance in sympathetic innervation of the heart. However nerve deafness and other possible neural abnormalities associated with LQTSs remain to be elucidated.
The incidence of fully expressed LQTS is probably rare, although variations of the syndrome may remain unrecognized and actually be frequent. Cases have been reported in every continent and in every race. Four factors are associated with an increased risk of SCD: deafness, history of syncope, males before puberty and episodes of sustained females menarche, and sustained (>30sec) and/or very irregular ("polymorphic", torsade de pointes) ventricular tachycardia.
There may be channel gene mutations which by themselves do not seriously affect cardiac cell electric activity, but that may render the heart susceptible to drugs that prolong the QT interval of the ECG. These drugs include commonly prescribed agents such as antiarrhythmic drugs, certain antibiotics (antifungals), psychotropic drugs, or diuretics causing wasting of potassium in the urine.
Ideally, drug treatments should be guided by new genetic and electrophysiologic insights into the different LQTS's. Until recently, anti-adrenergic therapy (beta-blockers) has been the major treatment for LQTS. However based on current information, new targeted treatments may now be considered. The underlying mechanisms of LQT3 are an increase in sodium current, whereas LQT1 and LQT2 arise from deficient potassium currents. These changes in membrane currents can be influenced with specific drugs that selectively block excess sodium currents (sodium channel blockers) or activate potassium currents (potassium channel openers).
In some patients with life-threatening arrhythmias, an implanted cardioverter defibrillator (ICD) may be an appropriate therapy.
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Daniel, This song is performed by a man who lived in Louisa County, where you spent a couple of your last days. He learned to play guitar in Charlottesville.   Although the song is really about baby loss, so much of it covers how we feel about having lost you from Earth.   I love you, Bug.

Do Children Ever Survive a Sudden Cardiac Arrest ?

The vast majority of children and teens who experience a full cardiac arrest, do die. However, they do not ALL die, if they receive competent CPR and defibrillation from an AED (Automatic Emergency Defibrillator.) It therefore makes good sense to certify all parents, all coaches, all teachers in CPR. All health care providers in most US states and Canada are required to be anyway. It also makes sense to have an AED in every school, every government building, and present at every soccer, lacrosse, baseball, basketball, practice and game, as well as at track and field events. Even when an AED is present, at say perhaps a school, the ideal time for its use is a narrow window, and depending upon the size of the facility, it may be brought to the scene too late.
Daniel had the benefit of rapid discovery and rapid CPR, and we administered epinephrine, and later an additional dose, but there was no AED in our home. There was no reason to ever buy one, or request one, although now of course, I wish we had found a way. Still, the window in which an AED is helpful is short. By the time we heard his fall, unlicked the bathroom door, pushed the door gently to move his body which was obstructing the doors opening, time was passing. Then since he was on his face, he needed to be turned over, his head tilted back and assessed for breath sounds, vomitus cleared, and breaths given, and then pulselessness detected, All these things take time, although his body should have responded to the care he received.
When an adult comes across a child in cardiac arrest, we often do not know the cause. It could be a metabolic disorder, an influenza, a respiratory arrest which led to a cardiac arrest, an anaphylactic (severe allergic reaction), or a severe asthma attack. We can't know what happened simply by looking. When a child drops to the floor with a sudden cardiac arrhythmia, we know even less. A well child who has been active that day, has dropped and is unresponsive, breathless and pulseless. According to data tabulated by the Parent Heart Watch, 100-150 children from 3-35 die of a sudden cardiac death annually. This does not include those who were successfully resuscitated and treated thereafter. The Heart Rhythm Society reported in 2004, 14,000 infants and children deaths from a sudden cardiac death or unclear causation sudden death syndrome. This is not as rare as others might have us believe.
Yes, some children survive, but not as many as we would like. I will make an effort to profile some of the survivors of Sudden Cardiac Death as well as those who we remember for passing as a result of it. There is no one state, national or world group keeping complete and comprehensive records of causes of sudden cardiac arrests in adults or in children. In fact, whether an autopsy is even done in many municipalities is a question of money available, coroner's request, and even family preference. There are simply so many more causes of death in youth for this to be a significant focus yet for public heath. I wonder how many children will die before this receives broader attention ?

"Aflockalypse" Continued

Daniel would have been concerned concerning this years losses of flocks of birds which have occured in a number of parts of the world. I posted on this subject once before when the Arkansas "aflockalypse" occured.
This time, the losses are of 200 Magellan penguins on the shore between Montevideo and La Paloma in Uruguay.Other animals were found dead there as well.


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600 Dead Penguins Present Uruguay Authorities with a Mystery

Published June 08, 2011

Fox News Based on data from the Associated Press


Authorities in Uruguay say that about 600 dead penguins have washed up on the Atlantic coast since Saturday. Experts are trying to determine what has killed the animals.

A navy statement Tuesday says the latest batch is 200 dead Magellan penguins discovered on the shore at La Paloma about 125 miles (200 kilometers) east of Montevideo.

A marine animal rescue group previously reported that the carcasses of 400 Magellan penguins washed up around the resort town of Piriapolis, along with dead turtles, dolphins and albatrosses.

The resort is about halfway between Montevideo and La Paloma.

Experts say it is common for dead penguins to appear in the area at this time of year, but the extent of the die-off appears to be unusual.


Read more: http://latino.foxnews.com/latino/news/2011/06/08/cause-sought-for-600-dead-penguins-1958907953/#ixzz1OoYPADus



RACHAEL LAMPA


Note: Rachael Lampa, now 26, has a large body of exceptional work, and will release a new album at the end of September, 2011. In March 2010, she and singer/songwriter Brendan McCarthy were married.

Let's Review

We know that many children who experience a sudden cardiac death secondary to a heart rhythm disturbance (also known as an arrhythmia), are without symptoms. Many times, their first symptoms are their last. However, Daniel would want us to review symptoms that may allow some families to detect these issues and to have their children with them longer, or even through adulthood and old age.

Remember that some children and teens who die of sudden cardiac death, have inconclusive or "clean" autopsies. No conclusive structural issues are found, and a sudden arrhythmic disorder becomes a diagnosis of exclusion, or of family history. Some children who die of sudden cardiac death had a viral infection a few weeks prior to their sudden death. Some children have an enlarged heart detected only following sudden death. Sometimes they are found to have cardiomyopathy, (an enlargement or thickening of the heart) or other times dilated cardiomyopathy, although Daniel did not have either.

The children who should be evaluated for potential arrhythmic disorders by a cardiologist  are:

1. Any child with unexplained fainting or "seizures" with a normal or inconclusive EEG.
(Sometimes these are not seizures, but short cardiac arrests which appear to cause seizures when the brain receives insufficient oxygen.)

2. A child with exercise induced asthma is at higher risk for sudden cardiac death than those without. (Daniel had some degree of exercise induced asthma, and saw an allergist)

3. Some physicians think that the siblings of children with SIDS or Near Miss SIDSs should
have EKGs as a precaution. (Daniel had one brother, with Near Miss SIDS at age six weeks)

4. A child with other relatives with arrhythmic disorders or who experienced sudden death before age 60 may also be at risk. (Much older people in our family have had arrhythmias,on both maternal and paternal sides.)


Remember that many children who die of sudden cardiac death were indeed athletic, and not sedentary. The patients who have Long QT syndrome, Wolff-Parkinson-White Syndrome, and Brugada Syndrome may not be those you might expect.

Remember that a heart rhythm disorder can occur in someone with "squeaky clean" coronary arteries. Daniel's were squeaky clean. Coronary artery disease does not cause all arrhythmias.


Lastly, make sure that everyone you love knows it. There are plenty of ways to teach your children, without cross words. Remember that every time that someone you love leaves the room, that you might never see them alive again. Treat everyone well.

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This is a simulation, but this is almost identical to many cardiac arrests. Daniel's probable arrhythmia,his arrest and his passing, may have been just this rapid. In Daniel's case, people with Long QT syndrome may experience an "R on T phenomenon (shown in the clip) then centricular tachycardia, (also shown) and progress to "Torsade des Pointes", (a twisting of the points). Torsade is almost impossible to convert to a life sustaining rhythm especially out of a hospital.
Even though we heard Daniel collapse in the bathroom, by the time we got through the locked door, and moved him away from it, and turned him over, and assessed for breath sounds, valuable time had elapsed. Even though he got CPR quickly, and then epinephrine, what we did may all have been just too late for the rapid progression of his presumed arrhythmia.








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Today's post is dedicated to Andrew Gold. Rest in Peace

Karla Bonoff, below, worked with Andrew Gold, in a group called Bryndle. Now, both Kenny Edwards and Andrew Gold, both of Bryndle and also of individual artist fame, are gone from Earth.

Back to Daniel's Farm

Daniel really loved this place. One of the reasons I did not get a chance to travel as much as I wanted to with him, is that he loved the farm and the animals so much, he did not want to leave much. He enjoyed people visiting, and if you could get him OFF the farm, he would enjoy where you would go, but he loved coming home to the farm. He was a "Day Trip" man. I used to try to get him to go to more places, but he tended to get carsick as I did when I was younger. Oddly, if I drive it doesn't seem to be a problem for me, and I think Daniel would probably have grown to be the same.
You may recall that last year, our few Rhode Island Red chickens and rooster began hatching eggs. The rooster is the one Daniel personally selected and brought home two days before his passing. The rooster (or competing hen ?) killed the first two, and in order to save the chicks, we took each of the eggs from them and placed them into a commercial incubator. We had nearly a hundred percent hatch rate, and as a consequence, we were left with about a hundred chicks, half male and half female. Although we plan to sell some, this leave us in dire need of housing for them. In Virginia, chickens need lots of ventilation, and it helps if you can structure something which can be moved around for cleaning. This week I began to think that a large fenced dog kennel, in a protected edge of forest area, with perches and a doghouse styled home, for inclement weather might be a good idea for some of them. Nice looking dog kennels are quite expensive and so I began looking in livestock sale newspapers and dog breeder newspapers for a used one.They apparently sell very quickly. Finally, I went on Craigslist and found one that had just gone up for sale. A man bought one for his dog who had puppies and now that the puppies have all found homes, he was selling it. Adam and I drove a couple of hours away to see it. Then we bought it, disassembled it for transport in the truck, and brought it home. Now we are in the process of identifying the private clearing near the woods where we will place it,and then we must prepare the area. From working on this yesterday I have tick bites, mosquito bites, chigger bites, and some poison ivy from the place where we bought the kennel. We will need several "housing clusters" for these animals, who already supply all our eggs and eggs for some of our neighbors. Since we have plenty of roosters, I will sell them to good homes at the farmers market, the next time I can get up and get all the way there by 7 am ! Most people really appreciate beautiful and healthy Rhode Island Red roosters. They also watch over their hens quite well.
This morning as I slept I was dreaming about visiting an Hispanic family somewhere, and they were speaking to me in Spanish. Then, someone patted my left foot as I was sleeping, and this was unrelated to the dream. I woke up to see what was going on. My husband was asleep, and the cat was in another room. I am left wondering if Daniel or Dad patted my foot, and woke me from a deep REM sleep. Thus far, I do not know what this means. I am also getting the phrase "water damage"in dream. Again, you may think I am a bereaved mother grasping at straws or you may think I am paying attention to things told to me by people I love who have passed. It's your choice.
Tonight at dinner when I saw my daughter and told her about the 4:30am "foot tapping", Stephanie reminded me that Daniel used to pat someone's feet while they were dosing or sleeping so as not to startle them. I do so hope it was Daniel. I love and miss him so.









After all, to the well-organized mind, death is but the next great adventure. ~J.K. Rowling

Sudden Cardiac Death: Not Only Boys

Today we remember Madison McCarthy

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Madison McCarthy, at age 5, asked to be excused from the lunchroom to use the restroom.
She was found in the bathroom, just as Daniel was, in cardiac arrest. Madison died on September 21, 2001. She and Daniel would be about the same age.Madison is thought to have died from Long QT Syndrome.


Sadly, there are many more. I hope she and Daniel talk to each other. They came to Earth approximately the same year.

What Is Commotio Cordis ?

This diagram will help to clarify the "risk window" in commotio cordis




What would be seen on 12lead EKG in impact which causes commotio cordis





Even a mild blow to the chest in sports or in play can precipitate commotio cordis




I realize that it's a difficult concept to grasp that a child or teen can be well one moment, without apparent illness and then in full cardiac arrest in another moment. It's a concept I have had trouble with, even when it happened here. I am still working on understanding this emotionally even two and a half years after our son Daniel's sudden passing.
In Daniel's case, the apparent cardiac arrest was spontaneous and without a specific identified causative factor. He appears simply to have experienced a heart rhythm disturbance which was incompatible with life. In Daniel's case, CPR and epinephrine injections were given by me, and ultimately and AED was used by the Sheriffs, but with no result whatsoever. A helicopter Medical ICU arrived soon after, and also could not restart Daniel's heart. It is theorized that Daniel's heart rhythm tripped into a probable "Torsade des Pointes" or twisting of the points, in which the electrical conduction system of the heart continues aimlessly without pumping, and almost always results in death, even when attended to immediately with CPR.

Daniel did not experience Commotio Cordis. There was no apparent soft or severe blow to the chest. Commotio cordis is a phenomenon in which the heart rhythm is significantly disrupted sufficiently to cause cardiac arrest, usually during sports, when an object hits or taps and area in the vicinity of the chest. Commotio cordis usually afflicts children or younger teens, the median age of 15, often boys. Being hit with a puck or ball, even lightly has caused a cardiac arrest, and interestingly, even when a chest protector was worn. Very simply put,during a normal heartbeat as traced by a normal EKG, the "P wave" represents the sinoatrial or SA node exerting an impulse to trigger a heartbeat. Then a "QRS complex) traces the beat through the remainder of the heart. Then and very importantly, the "T wave" traces the repolarization, rest period and readying for the beat to begin again. It is essential that the T wave occurs without interferences of any kind. To experience an "R on T phenomenon" is to experience a beat or tap in the chest or heart area during the T wave or "Essential repolarization" of the heart. This disruption of the cardiac rest period will cause a potentially lethal arrhythmia and potentially a cardiac standstill or arrest. Survival, even with rapidly administered CPR or with an AED handy, is only between about 30-35%. This is potentially possible not only in human beings but has been demonstrated in other mammals. This occurs more often during physical activity as a rapid heart makes the person more valuable, and seems to afflict more teens than adults, although this possible in all human beings.
I did give some consideration to commotio cordis is Daniel but only insofar as he had vomited just as, or just prior to experiencing cardiac arrest. Theoretically, vomiting reflexively during the T wave, could actually result in a de facto R on T phenomenon, insofar as it could disrupt the T wave and cause an arrest. The cause of Daniel's cardiac arrest though was a momentary consideration because the procedure to restart his heart would have been the same in that situation, regardless of the original cause.
I have described and discussed commotio cordis above because it has been in the news several times this year when young men from across the country have died following the familiar scenario. Also, I am getting a fair number of questions in the Hayden Walton case.
Hayden Walton, aged 13, experienced an apparent commotio cordis while playing baseball at the beginning of June. He apparently stepped forward to catch a bunt and received no more than a tap to the chest from the baseball. He made two steps afterward, and collapsed into a cardiac arrest. I would imagine that CPR was administered by either coaches, parents who were EMTs, physicians, nurses or CPR certified parents, but as is the case with so many of these situations, once a cardiac arrest secondary to commotio cordis occurs, restarting the heart can be difficult. According to news sources, both of Hayden's parents were present at the baseball game which ultimately took his life.
Once again, my family and I send prayers and condolences to any family who has experienced the loss of a child to commotio cordis or to any cardiac rhythm disturbance.
This may not be as rare an occurance as many of us believe. Although Daniel is believed to have passed as a result of a heart rhythm disturbance, it was not commotio cordis. Some of the kids who have died following commotio cordis are:

Thomas Adams age 16 New Jersey died January, 2011 baseball

Andrew Cohn age 15 Florida died June, 2010 baseball

Jaxon Logan age 18 Alaska died 2004 hockey

Louis Acompora age 14 died March 2000 lacrosse

Robbie Levine age 9 died Sept. 2005 baseball

George Boiardi age 21 (est.) died March 2004 lacrosse

Benoit Lebreaux age 36 Montreal P.Q, died June 2003 karate

Justin Saccone age 15 Ohio died Sept. 2003 baseball



and many others, about 200 since 1994, but this is believed to be unreported or reported as a death from other causes. At least now, commotio cordis deaths are being tallied.

More information on commotio cordis can be obtained by:

http://www.la12.org/

Another Cardiac Related Death of a Child

Photo immediately above found in UK Daily Mail


This particular death just occured, and was caused by apparent commotio cordis, the cessation of the heart beat when a strike occurs during the vulnerable period of the heartbeat resulting in arrest. No detail is included as to whether an AED was attempted or how quickly this child received CPR.
Of course, many Long QT deaths, or even commotio cordis deaths received CPR, and still did not pull through. My condolences,once again, go out to another family who is without their beloved son, for the remaining of their own time on Earth.

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Wednesday, June 1, 2011

13-year-old killed by pitch in Arizona Little League game Associated Press

By Cameron Smith

Tragedy struck in Winslow, Ariz. on Wednesday morning when a 13-year-old Little Leaguer died hours after being struck by a pitch in the middle of a game.
haydenwaltondeath

According to the Associated Press as well as a variety of Arizona outlets including ABC 15 News, Hayden Walton was struck by a pitch in the chest when he turned to bunt during a game on Tuesday night. The pitch reportedly struck the middle schooler in the chest, directly over his heart. That stopped his heart entirely; a condition medically referred to as commotio cordis, according to ABC 15.

"He took an inside pitch right in the chest," Winslow Little League official Jamey Jones told the AP. "After that he took two steps to first base and collapsed."

Walton was almost immediately transported to the nearest hospital, but he never recovered and was pronounced dead on Wednesday morning. The Winslow Little League suspended all games until Friday as a result and the incident was kept under wraps while those closest with the Walton family grieved for the loss of a young member of the Winslow community. Understandably, the Walton parents -- who also have a young daughter -- have been unwilling to speak to the press because of their shock and grief.

That sense of tragedy has been shared by members of Little League's national branch, where Steve Keener, the president and CEO of Little League Baseball and Softball, released a statement offering up condolences for all those connected with the tragedy.

"Words cannot adequately express our sorrow on the passing of Hayden," Keener told the AP. "Our thoughts and prayers go out to Hayden's family, all the players and volunteers of the Winslow Little League, his classmates, and his friends, at this difficult time.

"The loss of a child is incomprehensible."

While Hayden Walton loved playing sports, he was also considered a rising pillar of the community for performing a variety of good deeds. He was a Boy Scout and, notably, mowed lawns and pitched in on odd jobs like taking out the trash for older widowed women who lived in his neighborhood.

As of Friday night, no news about when or where Walton would be buried had been released. In the meantime, the Winslow community will continue to grieve over what can only be considered an overpowering and shocking loss.

"It's a hard thing to handle for everyone," Walton family spokesman Dale Thomas told the AP. "When you're touched by something of this magnitude, it sends shock waves throughout the community."
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