WHAT I LEARNED FROM DANIEL : THE BLOG ~~ Our loving, brilliant, and remarkable,twelve and a half year old son died suddenly, and without clear cause, the day after Thanksgiving, 2008. This blog is a window into how my husband, our children, and I learn what happened to him, and how we survive his passing from Earth. It is also a chronicle of the blessings that envelope us now. How we survive is documented both here in snapshot, and in our book, "What I Learned from Daniel".
As a diligent homeschooling family, when the kids were younger, we made a trip to a nuclear generation plant in Virginia. It was an impressive educational program which had been geared for high school students. Our oldest children at the time had not yet done a unit on nuclear studies, and for Daniel it was little more than a change of scenery with interesting architecture. I was glad we went though, because after 9-11, all tours and educational classes at those locations ceased for security reasons. What I did garner from the tour and classes myself though, is that this particular facility which had been recently built, was of a design which they indicated "required constant human intervention to sustain the nuclear reaction" rather than human attention necessary to curb it. The people running the educational department at least, were convinced of the safety and great value of what they were doing. Even though we are very much out in the country, a large portion of of our electricity in our location is generated by nuclear power. This has provided us with relatively low cost electricity in our rural environs. We did spend the first year in this particular farm off grid, and let me tell you, that generating and managing your own electricity for a family of six is costly, difficult and really did require an electrical engineer to manage. I have therefore been quite appreciative of the nuclear station quite some distance away. When the Great Earthquake of Eastern Japan occured recently, and impacted containment of multiple operational reactors at Fukashima Daiichi,I was concerned for the people there. When I learned there were not only multiple reactors, but two pools containing spent nuclear rods which were also potentially melting, I was concerned that too many reactors, and too many spent rods were being stored in the same location. When TEPCO began to cool the rods using seawater, I asked what they would do with all that radioactively contaminated seawater they were creating. My husband thought it might evaporate. I thought seawater might not. When I learned that one of the reactors uses a mixed fuel containing plutonium, I was also concerned. Local farming and potential for thyroid cancers and leukemia will exist there for many of the people exposed to more than simple background radiation. The Japanese as a whole, are concerned detail oriented people, and their preparations for earthquakes and other disasters are legendary. Today, Fukashima Daiichi and Fukashima Daiini remain in a state of partial meltdown liberating Iodine 131, 137, and radioactive Cesium. There is no end in sight to the challenges being generated by these quake and tsunami damaged reactors. I am left wondering that if the Japanese, who are generally detail oriented and careful people, cannot manage and contain this nuclear plant, then how rational is letting the rest of the world try to produce nuclear power ? I know that NO power generation is without human and environmental risks, but the risk on return ratio this week is certainly looking concerning.
As you know, when Daniel walked into the bathroom, the morning after Thanksgiving, collapsed and experienced a respiratory and cardiac arrest. I had no idea why. The autopsy that occured afterward at a major university medical center, also did not. As a parent, as a registered nurse, and as a college instructor, I cannot help but try to ascertain what happened, and try to figure out how I failed him. Because Daniel would want me to, I have gone on, and I am doing what he and Dad would want in terms of living a life, but I can't stop looking back, and trying to discern what happened, which I am afraid I do periodically.
We know that the pathologists who completed and subsequently reviewed Daniel's autopsy believe that he died of Long QT syndrome or similar syndrome. They arrived at this as a diagnosis of exclusion. Nothing else life threatening was found, and since arrhythmic syndromes are functional and not necessarily structual issues, sometimes they present with nothing other than sudden cardiac arrest and a relatively clean autopsy. (Clean meaning nothing found that should have caused death, although all autopsies have "incidental findings", irregularities which may deviate slightly from textbook normal, but are not felt to have been causative or even contributory to sudden death.) I still find it hard to believe that Daniel, who could go from 0-60 mph running on the farm when he wanted, had this issue. I just believe that there should have been some indication of periodic arrhythmia. After all, I detected paroxysmal atrial fibrillation in my oldest son, and it was treated. How could I have missed whatever this was ?
HHNK or even DKA did cross my mind almost immediately when I began CPR on Daniel. As the parent of a juvenile diabetic daughter, I have always lived in fear that autoimmune diabetes would afflict at least one of my other children. (Incidentally, I detected her juvenile diabetes myself and took her to an endocrinologist early in its course.) The truth is that although another sibling of a Type I sometimes contracts Type I diabetes,during childhood or teens, it is unusual. I did periodically check blood sugars on them, especially during growth spurts, if they had influenza, or sometimes in summer when they seem to drink more fluids than usual. I have never found an elevation other than in our known diabetic child. Daniel did not show symptoms of DKA (Diabetic Ketoacidosis) prior to his passing.
Lets suppose for a moment that Daniel experienced HHNK. HHNK stands for Hyperglycemic, Hyperosmolar Non-Ketotic Syndrome. It occurs in Type II diabetics, normally adults. However, there are increasing episodic cases of children now. Because we have a family history of Type I diabetes in my daughter, we are at higher risk for other endocrine and blood sugar regulatory disorders, and so Type II, a different illness of glucose regulatory failure, is still possible. The patient with HHNK is a Type II diabetic, occasionally non-diagnosed, who has a high blood sugar,(often greater than 600), no discernible acetone on his breath (no ketone bodies), nausea, extreme dehydration, and neurological issues which may lead to coma, convulsions and death. In Daniel's case, no immediate blood sugar was drawn upon his death, and we were told that one would not be accurate pending the autopsy. I now know that his bloodsugar at time of death could have been ascertained by obtaining a small amount of vitreous humor from the eye, but this also, was never done. I have spoken with three endocrinologists and all three believe that Daniel could not have spent two weeks at home with me, homeschooling and vacationing, had HHNK and that I would not have known it. I am not so sure. How many of us would determine that a child almost 13 might have dilute urine ? How many of us really would know how much water our child drinks ? How invasive are we really with our children, unless we detect something not being quite right? I was lucky in detecting problems with our other children. This time, whatever it was, I was not.
I have the assurance of people who should know that he did not die from HHNK. Do I believe them ? I don't know. Something called Daniel from us, that beautiful still, backlit morning, and as much as I know he always belonged to God, and he is God's to call, I still want and need to know how. I need to know not only what I missed, but the implications for our other children, and potentially for grandchildren someday.
UPDATE: The pathologists who did Daniel's autopsy still feel that Daniel's passing was secondary to a spontaneous cardiac rhythm disturbance of unknown etiology"(cause) This is a presumed and theoretical cause of death, and a diagnosis of exclusion.
In Russian "Love Like A Dream"
Lara Fabian and Igor Krutoy
Daniel when he was on Earth, was actually much more intelligent than I. Following his passing,his departure leaves a mouthpiece still flapping, without the brain engaged. While he was here, we discussed a lot of things which likely bordered the realm of science fiction or even science fantasy. Let me see if I can explain one of our conversations. Some years ago we discussed the possibility that technology on Earth would improve to such a degree that life, and the social fabric on Earth would change. For example, if perhaps a secondary storage device which could interface with the human brain were developed, then I, for example, would have access to a great deal of tangible information. This might not simply improve my writing, but my thoughts, my conclusions, my goals and my objectives. If this concept were to be repeated many times,with different people, the world over, then changes would occur on Earth. In a time in which we have not yet assessed and fully digested the sociological long term implications of simply the internet and its use, the boosting of our own brain's libraries could change a great deal. Education would be impacted. Jobs would be impacted. Social fabric would be altered. Others have also speculated that as artificial intelligence and simulated learning of computers change exponentially, that it may only be 34 years before a computer exists which is superior intellectually to human beings. Along the same lines of Daniel's and my discussion is a concept called "Technological Singularity", which is being discussed often today in universities and other places. Technological Singularity is simply put, a radical change in our civilization which occurs as a result of our use and reliance on technology. In this conceptual concern we artificially amplify human intelligence using the crutches of computers and informational storage. This leads us to develop assistive medical devices which prolong life and improve our length of working lives. These technological advances could conceivably result in changes which would ultimately broaden the perspectives and thinking of human beings. As we speak, geniuses and think tanks are wondering when we will reach a point at which technological singularity operates as a crutch which prevents human beings from developing as integrated biological entities, and alters our normal development as human beings and as a race.Some have called this the "Rapture for Nerds". My thought on this is that it already has. Computers being used as widely as they are, and even in places where they are, frankly unnecessary, have changed a couple of generations. Cursive writing is no longer being taught in some American schools, as computer keyboarding is accomodated in ever younger grades. Spellchecker has resulted in many otherwise intelligent young people, being quite incapable of spelling conventionally. Some students, without a computer, simply can't self occupy, plan, organize, or live. It has impacted social skills, dating, and job searches, and not necessarily in healthy ways. Increased tolerance for simply incorrect spelling and grammar is seen, in schools as, "simply the price for teaching computer competency". We already have some people in the world who use media to make decisions for them, and who are incapable of considering and concluding using data available. Some of our youth is decidedly less capable of reasoning with their brains alone, than WWII counterparts were. Some people fear that computers will ultimately reach a point where they can "out think us" and that independent and creative thought, as we have known it, in prior generations will cease". I don't know if it will, but so far, it has. Perhaps it's not quite science fiction after all.
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This young man is Jake Barnett, a rather bright 12 year old young man who reminds me of Daniel, a bit.
Sometimes I don't know what is simply life, simple synchronicity, or a direct and intended message from Daniel. In the past week, my son Matthew was home for Spring Break from his college. He and I went out on the one nice Spring day we had this week. We went out to buy something he needed and I took him out to lunch. We left the farm mid-morning, and we found ourselves on an empty stretch of interstate highway. A few minutes leter, a silver sportscar appeared from almost nowhere, passing me, and pulling in front of us in the right lane. Their license plate said, "(heart) you more". I hadn't processed what a painted heart in front of the personalized plate "you more" meant, when Matthew said, "Mom, isn't that what Daniel always used to say ?" I had almost forgotten. Whenever I said, "I love you" or "I love you SO much", he would always respond, "I love you MORE". With that, the silver sportscar shifted again, and sped out of site, despite my momentary effort to keep up.
"Valentine" Written by: Jim Brickman and Jack Kugell Performed by: Jim Brickman (piano) Martina McBride, vocals. Producer: Dan Shea
Daniel's favorite picture of Stephanie and I, taken when she was a teen.
The task of writing this blog is a special one. It began as a way of staying sane, and setting out my own feelings following the unexpected loss of Daniel, which followed the expected passing of my father, by only 31 days. Over time, it has evolved into a way in which I feel that our family does some good in the world by honestly sharing our feelings and thoughts concerning the many aspects of continuing as a family, after the loss of a dear member of it. Perhaps by calling attention to sudden death without clear cause, and validating other families thoughts and feelings on it, we can do something of value here, in the time we have remaining on Earth. In writing the blog, I do notice topics for which our readers have been searching for information. I noticed today that someone inquired as to whether we had a blog page on moving after the death of a child. I would like to weigh in on our view on this.
Your child, or your father, mother, husband, sister, or brother who have passed, are tied by love, to you. Everything else on Earth fades eventually, but love endures always. They are tied to people and although they may love certain homes, gardens or other places, and have been happy there, they are less tied to places, and more to the people they love, who still inhabit the Earth. If you wish to move, then most psychologists, social workers, psychiatrists, and even psychics, recommend that you not do so, for at least a year after the passing of your loved one. Remaining in the same place, if possible, can be helpful, they feel, in the grieving process, and I talk a lot about grieving. Grief is not something to be abbreviated, circumvented, abridged, amended, or otherwise surgically or otherwise altered. Grief must occur, and we must go through every warm tear of it. Everyone grieves differently, and the time it takes to do this, varies between each individual and circumstance. There is no right, or no wrong way to grieve. When we change where we lived with the person with whom we are grieving, too soon, we may short change ourselves in the chance to fully experience each joyful experience we had with them, and each loss that follows it.
So in short, remain at least a year in the place you lost your child, if possible. Remember that he will follow you, when you move, whether or not you have a room for him or not. You may wish to take some things of his with you, to a new place, if you wish. If you want to move, or really need to move, then you should, for any tangible reason other than for the purpose of avoiding grief.
This was not our choice. We chose to remain in the farmhouse we built, where Daniel died. Yes, we feel his being. We see his animals, his dogs, chickens and the trees he planted. We watch the pine tree grow that he planted and decorated outdoors each Christmas, I think, for the animals. We found some peace in completing the farm, outbuildings, and task we had set when he was here on Earth with us. We did redo and repaint his bedroom, giving him a smaller basement room decorated the way he would have liked, to store his favorite things, as if somehow he visits on sabbatical from Heaven. Sometimes we lie on his bed, and look at the remembrances. His two older professional artist siblings painted realistic looking clouds and sky on his ceiling, and often, they appear to drift as you watch. His considerable DVD and CD collection sits on blond bookcases which cover a large wall, below them, his books, and of course, pictures of him are there as well. He would laugh if he saw it now, and say, "Wow Mom, a really comfortable and clean shrine !" He might say that, but he would love it. He finally got a chance to move down to one of the basement bedrooms as he had always wanted, even though it followed his departure from Earth. We use the room as a place to watch his television, watch his favorite dvds, look at pictures of him. We use it as a place to recharge and remember, and for us, it is a happy place.
The lead vocal is actually done by Christine Dente, found on an album by all of these ladies.
The following article is interesting for those of us who lost a healthy child suddenly. However, Daniel's DNA was checked for these markers, and he did not have them. Our other children do not have lengthened QT intervals any time they have been checked, although one had a potassium dependent atrial fibrillation, as my father had.
Mutation Causes Specific Arrhythmia and Sudden Cardiac Death
on February 5, 2003
An international team of researchers has demonstrated a genetic basis for a fatal form of inherited cardiac arrhythmia that usually strikes young, seemingly healthy people. Basing their research on a French family with a form (Type 4) of inherited Long QT Syndrome (LQTS) and experiments in mice, the researchers found the mutation in a specific gene encoding ankyrin-B, a protein within heart muscle cells. Their discovery identifies what appears to be a novel mechanism for cardiac arrhythmia.
From the Duke University Medical Center : Mutation Causes Specific Arrhythmia and Sudden Cardiac Death
DURHAM, N.C. — An international team led by researchers from Duke University Medical Center and the Howard Hughes Medical Institute (HHMI) have demonstrated a genetic basis for a fatal form of inherited cardiac arrhythmia that usually strikes young, seemingly healthy people.
The results of the study were published in the Feb. 6, 2003 issue of the journal Nature.
Basing their research on a French family with a form (Type 4) of inherited Long QT Syndrome (LQTS) and experiments in mice, the researchers found the mutation in a specific gene encoding ankyrin-B, a protein within heart muscle cells. Their discovery identifies what appears to be a novel mechanism for cardiac arrhythmia.
Normally, ankyrin-B acts as a biochemical symphony conductor, ensuring that microscopic pores in heart muscle cells known as ion channels open and close in a coordinated fashion. These channels allow such chemicals as calcium, potassium, sodium and chloride to pass in and out of the cell with each heartbeat, thereby regulating the electrical activity of the heart.
“We have found a brand new mechanism for cardiac arrhythmias based on the coordination of these different ion channels,” said HHMI investigator and Duke cell biologist Vann Bennett, M.D., senior member of the research team. “It appears now that the arrhythmia arises, not due to some malfunction of the ion channels themselves, but a failure to ensure that multiple ion channels open at the right place and at the right time. Scientists have been looking for ion channel mutations, but they have not been able to find them.”
The QT interval is a measurement taken by electrocardiogram that represents the period of time from electrical stimulation of the heart’s pumping chambers to their recharging for the next heartbeat. In normal people, this interval ranges from 0.38 to 0.44 seconds. However, for people with LQTS, this period of recharging can be delayed up to 0.5 seconds, which put these patients at high risk for arrhythmias.
This constant back-and-forth electrical stimulation and recharging is controlled by different ions passing in and out of the cell, which alternately changes the cell’s polarization. About one-third of patients with the disorder never experience symptoms, but those who do can experience loss of consciousness, abnormal heartbeats or sudden death.
LQTS is a dominant genetic disorder, meaning that each child of a parent with the disorder has a 50-50 chance of getting the disease.
In 1995, the researchers identified a large family in France with a preponderance of members with LQTS. A specific mutation, known as E1425G, was found to be associated with LQTS in 22 of 24 of the family members and with abnormal heart rhythms in 23 out of 24 members. The mutation was not present in more than 400 control samples.
The researchers then examined effects of this mutation on the important ion channels that regulate calcium levels in heart cells using their ankyrin-B mutant mouse model of LQTS.
“We found that two normal copies of the ankyrin-B gene are necessary for normal calcium signaling, and that the E1425G mutation leads to a loss of function,” said Peter Mohler, Ph.D., HHMI post-doctoral fellow at Duke and first author of the paper. “So, ankyrin-B is the first identified protein implicated in a congenital LQTS that is not an ion channel.”
The team performed further comparisons between humans with LQTS and mice with the E1425G mutation of ankyrin-B, and found striking similarities in cardiac performance, including reduced heart rate, a high degree of heart rate variability and other heart rate disturbances that could not be linked to electrolyte or structural defects of the hearts. They also found similar loss of function in ion channels other than calcium.
“Sudden death in humans with this mutation usually occurred after physical exertion or extreme emotional stress,” Mohler said. “One of the members of the French family died suddenly at the age of 37 while running up a hill. So we wanted to see if this same effect would be present in the mouse models.”
To simulate these circumstances, the researchers exercised the mice and then injected them with epinephrine, one of the so-called “fight-or-flight” hormones that stimulate the heart.
“Of the 14 mice with the mutation, two became unresponsive seconds after exercise, and eight died following exercise combined with the injection,” Mohler said. “The effect was dramatic. None of the mice without the mutation showed any adverse effects from the exercise or the epinephrine.”
Bennett believes that the insights gained in these experiments could also have important implications for disorders of other organs, especially those that like the heart, have excitable membranes responsible for proper organ function. These organs include the nervous system, the lining of the lungs and the kidneys, and beta cells in the pancreas that are responsible for release of insulin.
The research was supported by the National Institutes of Health, the Muscular Dystrophy Association, the Canadian Institutes of Health, the Institut National de la Sante et de la Recherche Medicale, and the Programme Hospitalier de Recherche Clinique.
Other members of the team are: Jean-Jacques Schott, Karine Haurogne, Florence Kyndt and Denis Escander, Laboratoire de Physiopathologie et de Pharmacologie Cellulaires et Moleculaires, Hotel-Dieu, France; Herve Le Marec, Hospital G&R Laennec, Nantes, France; Keith Dilly, Silvia Guatimosim, William H. duBell, Long-Sheng Song, Terry Rogers and W.J. Lederer, University of Maryland; and from Duke, Anthony Gramolini and Mervat Ali.
I know that you and Dad said in a dream, that I did not have to figure out a memorial to you both, that what I should do with my time remaining on Earth, would gradually become obvious,or at least, clearer. Dad, you have also said, that you would manage "our business in Heaven", which I take to mean our family there, if I will manage our family and interests on Earth. I try to remember this. This blog has been a help to me. You would not believe how many people log on, how many people write me privately, and how you have both touched the ends of the Earth. We routinely are read by people from Indonesia, Russia, Iran, France, Italy, Switzerland,Portugal, Iceland, Germany, New Zealand, China, Japan, Hungary,Poland, Croatia, Israel,Australia, Bosnia-Herzegovina, Ireland, Scotland, England, Wales, Canada, Finland, Sweden, Taiwan, Panama, the Netherlands,the Czech Republic, Serbia, Ukraine,the Phillippines, South Korea, and many others. Daniel, I thought we had discussed everything on Earth while you were here, but we hadn't. We had never discussed that your eyes show central heterochromia. Your eyes are so beautiful, and you are so talented in so many ways. I just told you that you had beautiful eyes. Interestingly, the post on heterochromia, where I show examples and discuss it and its implications, is our most frequently consulted post on our blog. It seems also that grief and loss are felt and are universally understood by everyone in the far reaches of this blue planet. For now, I am trying to call attention to the need for screening children with an EKG, possibly periodically through life, in an attempt to detect potential defects in QT interval, or the presence of Wolff-Parkinson-White Syndrome,or other arrthymic syndromes with an eye to catching and treating these children in order to prevent what has parted us. I miss you both so much. Daddy, perhaps if in medicine, we had been better versed in arrhythmia, the arrhythmia you held for 30 years, would not have weakened your heart, and worn in out when it did. I do these things for each of you. Daddy, today as I used the Ladies Room in Lowe's, I remembered something I had not remembered for many years. When I was very small, perhaps 3 or 4, we stopped at a gas station so that I could use the bathroom. We used the one men's small bathroom, and while I did, the door lock jammed from the inside. I was very scared that we could not get out. I remember how calm you were and how you told us we would be fine and we would get out even though the walls were brick and the door was metal. I hold on to that feeling today. I know you are ahead of me with Daniel, and that I will ultimately, get out of this room, and join you both, after my time here and my work, is done. I love you both always, and thanks for watching all the animals there with you for me also !
Daniel never fainted. He never gave us cause to wonder if anything was wrong. It is my hope that by informing others of this series of syndromes, that other sons and daughters may have these syndromes identified and treated,and can spent the rest of your life on Earth with you. Daniel also does not have any of the KNOWN genetic markers for LQTS, (Long QT Syndrome) or other conduction disorders, as identified by Mayo Clinic in lengthy genetic testing, completed on his blood retained from autopsy, only recently.
This is an interesting article from Science Daily.
ScienceDaily (Sep. 18, 2006) — Fainting during childhood, and whether a teen is going through the male or female changes of puberty, are among the factors that predict whether a genetic defect will suddenly stop the teen's heartbeat, according to a study published today in the Journal of the American Medical Association (JAMA). The study also found that treating teens at the highest risk for fatal arrhythmias with widely used blood pressure drugs reduced their risk by 64 percent.
Cardiac arrhythmias are electrical malfunctions that throw the heart out of rhythm, causing many of the 330,000 sudden cardiac deaths each year in the United States. Most fatal arrhythmias occur in aging patients when scar tissue left by a heart attack interferes with the heart's electrical system. As many as 1,000 of the deaths, however, are caused by a genetic disorder called Long QT Syndrome (LQTS), which occurs mostly in teens with otherwise healthy hearts.
The QT interval is part of the heart's electrical signature as recorded by an electrocardiogram (ECG). It represents the time it takes for the heart's lower chambers to "reset" electrically after each heartbeat. In LQTS patients, the QT reset time is prolonged, which makes the heart more susceptible to fatal arrhythmias. The condition may go unnoticed until sports, strong emotions or even loud noises knock the heart out of rhythm, causing loss of pulse and consciousness (syncope). Sudden death often results if the heart is not restarted with a defibrillator.
"LQTS shocks communities across the nation each year as teens die during sporting events," said Arthur Moss, M.D., professor of Medicine in the Department of Medicine at the University of Rochester Medical Center and an author of the JAMA paper. "It runs in families and can remain undiagnosed until the victim's brother or sister dies as well. New research has made clear the factors that accurately predict which kids are at high risk, factors that can be easily be monitored during routine office visits. We have the power to save more children through vigilance."
In 1979, Moss helped to launch the International Long QT Syndrome (LQTS) Registry, a database of families with the LQTS trait. By following generations of sufferers, gene hunters used the registry to track down more than 300 genetic mutations involving seven genes that cause versions of LQTS. By following the outcomes of patients in the registry over many years, researchers are now drawing accurate conclusions about risk.
Study Details
In current study, researchers went back and looked at 2,772 subjects from the LQTS Registry who were alive at age 10 and who were monitored by a physician until age 20. This is the largest LQTS study to date, and it is study the first to look at which risk factors are associated only with life-threatening events in teens, both those that ended in sudden cardiac death, and those where cardiac arrest was stopped by emergency treatment. Researchers found three significant predictors of life-threatening events in these patients: timing of prior fainting spells (syncope), the degree to which the QT interval was prolonged as measured by an ECG, and the patient's sex.
Statistical analysis revealed that children with two or more fainting spells in the two years prior to the study period were about 18 times more likely to experience a life-threatening event than children with no history of fainting spells in the previous ten years. Children with a recent history of a single fainting spell in the two years prior to the study period proved to be at nearly 12 time greater risk.
The second clearly identified risk factor was the length of a child's QTc, which is QT corrected for heart rate, a more accurate measure. Results confirm that patients QTc of greater than or equal to 530 milliseconds in length were twice as likely to experience a life-threatening cardiac event as those with a shorter QTc.
Thirdly, the study found that male children were at four times greater risk than females between the ages of 10 and 12, but there was no significant risk difference between males and females 13 to 20 years of age. One theory is that shifting levels of androgens in males and estrogens in females, the hormones associated with the changes of puberty, may change QTc during adolescence to create different risk levels at different stages. Further research is needed to clarify these complex relationships.
Perhaps most surprisingly, the current analysis found no significant association between the genetic type of LQTS a patient had, and their likelihood of facing a life-threatening event, despite the findings of previous publications to the contrary. The author's argue that clinical factors provide a more accurate representation of disease severity than genotype.
Lastly, researchers found that beta-blocker therapy reduced risk by 64 percent among children with syncope in the two years prior to the study period (those at highest risk). The use of beta-blockers for all LQTS patients, especially the LQT1 and LQT2 subtypes, remains prudent, according to the study authors. In addition, implantable cardioverter defibrillators (ICDs), devices designed to correct arrhythmias, should be considered given that landmark studies have found that the devices can drastically reduce sudden death.
"Between beta-blocker therapy, ICDs and preventive monitoring, we should be able to prevent many of these tragedies," said Jenny B. Hobbs, M.D., first author on the JAMA paper and a recent graduate of the University of Rochester School of Medicine and Dentistry. "Perhaps we can alleviate the suffering of these at-risk families and help to solve a major worldwide health threat with the same line of research."
My family and I send sincere condolences to the people of Japan impacted by this disaster, and to the families who are grieving or are otherwise concerned with their family's location and safety. All of you are in our prayers.
It is exceedingly important for each family to assess the potential natural and man made disasters which may occur in their region, and make plans and contingencies for such emergencies. All of our readers should do this now. I am afraid that in this particular case, multiple preparations made have saved many lives, but could not save all of them.
Please know that no one who has ever lived, is ever really gone. Please know that no matter what they endured, for a short time, that they are safe and calm now, and that their concerns now, are for you.
There is an abundance of children and teens who have died suddenly, and whose autopsies are unclear concerning a cause of death. These are only three of them.
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Another precious Daniel, other than my own, passed in 2008. Daniel Milgram, passed in April, 2008.
Unexplained death no bar to fond memories
By HILLARY DAVIS
Sun Staff Reporter azdailysun.com | May 12, 2008
Daniel Milgram
It's been a month and a day since Daniel Milgram died unexpectedly.
Now, although his loved ones are not certain what took him from them and continue to pursue tests, they are feeling lighter at least knowing what it wasn't — an overdose.
Daniel's sudden death on April 12 devastated his friends and family, their hurt compounded by the uncertainty and mystery surrounding the 17-year-old's death. He died, apparently in his sleep, as he stayed over at a friend's house.
Preliminary toxicology reports show that his death cannot be attributed to drugs or alcohol, which brings comfort to his friends and family who knew him as a spirited, soulful, clean-living boy.
UPLIFTING, GREGARIOUS, LOVING
Daniel had rhythm — when he played the drums, the guitar, the wheel of a bicycle. In the way he danced. In the way he walked. He had grace in the way he reached out to friends and even people who weren't his friends, showing them truth and cheer.
Loved ones described him as uplifting, gregarious, loving, outspoken; a pacifist, a prankster; soulful but playful.
Daniel had curly blond hair that he grew out into a wild golden hedge, but then happily cut off and donated to a wig-making charity. He once bummed a cigarette off of a friend, then ripped it in half. He did not approve of smoking.
His highs were natural, his friends said, and he drew much love from his music.
He played the bass, banjo, mandolin, ukulele, piano and other instruments, in addition to his beloved drums. He was a songwriter and wrote music. He could even dance — a silly, impromptu jig or proper ballroom waltzes.
The night of his death, he went to a gathering at a friend's Cheshire house at about 2:30 a.m., after attending a concert downtown. He called home and left a message on the answering machine.
As he and the other young men in the house prepared to bed down, he stepped into the bedroom his friend, Zachary Davidson, was sleeping in. He leaned over and tucked him into bed.
Zachary described him as absolutely sober.
"He had, like, an inner beauty about him. I can't even describe — there was something about him," Zachary said. "He could always make you feel better."
David Milgram, his father, said the whole autopsy report, including the findings of a standard toxicology test, is not back yet.
"But preliminary indications indicate that there is nothing to do with any drug or alcohol use, and the coroner could not find an anatomical cause of death," David said. "It's a complete mystery."
Daniel's friends point out that he suffered a bad skateboarding fall not long ago, and that he was sensitive to mold. David said he asked the county medical examiner for more extensive testing, and they expect to have more answers in the next few days.
"We're trying to find the truth as best as possible, but so far, from what I've learned from him, the coroner, he's completely stumped," he said.
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Ann Jolly, a mother of Ashley, a son who
died suddenly of sudden arrhythmic death syndrome.
Ashley Jolly
Inspirational Women of the Year Awards: How one mother's heartbreak has helped save countless young lives
By Isla Whitcroft
2nd November 2010
As part of our Inspirational Women of the Year Awards — launched with The Open University — the Mail is telling the stories of some of the people you’ve nominated. ISLA WHITCROFT talks to Anne Jolly, 56, who, after the sudden and unexplained death of her teenage son, set up a charity to prevent other families suffering a similar terrible loss. . .
Terrible loss: Anne's son Ashley was only 16 when he died of Sudden Arrhythmic Death Syndrome. Now she helps other bereaved families
Twelve years on, Anne Jolly can still remember every word of the phone call that shattered her world for ever. She was at work, and her youngest son Philip was on the line, panicked and frightened.
‘It’s Ashley. I can’t wake him. He won’t wake up, Mum.’
‘I knew immediately that Ashley was dead,’ says Anne, then a secretary working part-time hours to fit around her family. ‘I don’t why — call it a mother’s instinct.
‘I raced home in a blind panic and found Ashley lying on his bed, looking peaceful as if he was asleep. But he was clearly dead and probably had been for some hours.
‘The paramedics tried to revive him, but stopped quite quickly. They said they were sorry but there was nothing more they could do.’
Ashley, a sports-mad, fit 16-year-old was gone for ever. Because his death was unexplained, the police were called, the room cordoned off and no one allowed in.
Finally, his body was taken away for a post-mortem, leaving behind him a utterly distraught and shell-shocked father John, mother Anne and brother Philip, then 14.
‘The pain is like a physical one which takes your breath away,’ says Anne. ‘You care for your children, nurture them, protect them and keep them safe from all harm — only to find that you can’t actually keep them safe from death.
‘We sat there in a daze. I was desperately going through what he had eaten the day before, what he had done. How could my son die without warning, without even giving us a chance to save him?’
It was a question that was to haunt Anne for months to come.
‘The post-mortem results stated he had died of an asthma attack,’ says Anne, from Brentwood, Essex.
‘But I just couldn’t accept that. Ashley had never had an asthma attack in his life, his bedclothes were undisturbed and neither his brother, who slept in the same room, nor I had heard a thing. Surely he would have struggled for breath or called out for help.’
The need to find out the truth of what happened became, in Anne’s own words, an obsession.
‘I went on the internet and started to write letters and emails to experts in a variety of fields. I sent a copy of Ashley’s post-mortem to professors in all the London hospitals and eventually one wrote back to say they felt Ashley’s death most fitted the symptoms of a cardiac abnormality.’
___________________
Quinton Sanford
Denver and the west
Coroner: Death of Highlands Ranch runner was "natural"
By Daniel Petty
The Denver Post
Posted: 12/18/2009
Quinton Sanford ran and wrestled for Highlands Ranch High School. (Special to The Denver Post)
A Highlands Ranch High School student who collapsed in September during a school-sponsored run probably died of cardiac arrhythmia, although no clear heart abnormalities were found, the Arapahoe County Coroner said in an autopsy report.
The coroner ruled the death of 15-year-old Quinton F. Sanford natural.
The Dec. 3 report said Sanford's lungs, liver and spleen were congested — the result, likely, of the heart failure. Sanford also suffered from asthma, but the report said his lungs did not show signs of an asthma-related attack. Reactions caused by Sanford's medications were not deemed a factor.
"There was nothing related as to why my baby was taken," said his mother, Jill Sanford. "But we do know that we are proud of our son and the profound impact he's had on so many people's lives. God blessed us with him for almost 16 years, and for that we are grateful."
Sanford was a sophomore member of the wrestling and cross country team who collapsed Sept. 30 while running with his father, Frank Sanford, in an annual fun run along the High Line Canal. His father immediately began giving CPR while a bystanding physician assisted, but Sanford was pronounced dead shortly after arriving at the hospital.
Despite living with a severe form of autism, he was popular in school — known among his many friends as "Q" or "Q-man" — and beamed with optimism, caringness and charm, friends and family have said.
"Q was such a big part of our lives," Jill Sanford said. "We're doing this one day at a time. People are sending us stuff about him everyday, and the outreach we've been blessed with by these (Highlands Ranch) kids has been remarkable."
Daniel Petty: 303-954-1081 or dpetty@denverpost.com
This is an earlier obituary:
LITTLETON — Quinton Sanford never let self-doubt hold him back.
He planned to attend the Air Force Academy and act in a movie alongside Will Smith. He was a member of the Highlands Ranch High School wrestling and cross country teams. Although he was neither the fastest runner nor the strongest wrestler, he didn't let that trouble him. He did it all while living with autism.
Sanford, a 15-year-old sophomore, died Wednesday after collapsing during a run with the cross country team.
An autopsy was inconclusive about cause of death. Additional test results are expected in seven to nine weeks.
On Monday, hundreds of his high school peers were among the mourners at Pax Christi Catholic Church for his funeral. It was a poignant display of how a young man with a heart bigger than his disability had become one of the school's most beloved students.
Sanford transcended the social barriers and cliques that often dominate high school, his family said. He sat with different students in the lunchroom every day and was widely known as "Q" or "Q-man."
His father, Frank Sanford, and mother, Jill, were confounded when he joined the wrestling team his freshman year, especially because he had never liked being touched. He later earned a varsity letter.
"He just liked to belong and be part of a team," said his father. "He loved the kids. He wasn't the most gifted athlete. He just had the biggest heart."
He had a knack for remembering names, and friends and family alike were drawn to his unfettered display of happiness and caring for others.
"Everyone to him was the same," Jill Sanford said. "He wasn't worried about what other people thought."
Outside after the funeral, Sanford's high school friends — many clad in school paraphernalia — quietly joined hands to form two lines flanking the pallbearers that carried the casket of their friend. And when the procession emerged from the church, as if on cue, the sun broke momentarily through the overcast sky.
Quinton Frank Sanford was born Nov. 17, 1993, and is survived by his father, Frank; his mother, Jill; his brother, Mitchell, 14; his sister, Jenne Lee, 11; and grandparents Jim and Jenne Lee Twiford and grandmother Kay Sanford.
This week, a sixteen year old young man named Wes Leonard, who had just made the winning basket in his team's final game of the perfect season, went into cardiac arrest, and was later pronounced dead at a Michigan hospital. Today, the ABC affiliate in Fort Collins, Colorado was telling us about a seventeen year old named Matthew Hammerdorfer who took a blow to the chest during a school rugby game(Commotio cordis). He subsequently experienced a cardiac arrest, and was also later pronounced dead after being airlifted to a hospital.
Coroners claim that these young athletes must have had a congenital predisposition to a heart rhythm disturbance which caused their deaths.(This is not the same as what is commonly known as a "heart attack" or more correctly, a myocardial infarction. A heart attack involves clots and constrictions in the arteries that feed the heart, and cellular death occurs to the organ. "Heart attacks" are the result of coronary artery disease and normally are an issue for adults or older people. Daniel's coronary arteries on autopsy, for example were as "clean as a whistle".) For the purpose of this discussion, we are speaking about spontaneous heart rhythm disturbances which occur in young people, independently of any coronary artery disease.
Of course, I cried when I heard about each, because when I hear about another family's loss, I am immediately transported to the day that Daniel, on a perfect morning the day after Thanksgiving,two years ago, walked into the bathroom, collapsed and died. He was only 12 1/2 years old, and despite immediate CPR, and epinephrine, we never got him back. The medical staff on the Med-Evac helicopter worked for hours before pronouncing him dead on the oak floors in the hallway outside our main bathroom. The devastation of these families will never disappear. The loss of their child from Earth will remain both permanent and in some ways, forever emotionally inexplicable.
When Daniel died, I had to try to make sense of what had happened. I needed to explain this to myself in the language a college professor and critical care RN would understand. I did a great deal of research, and even contacted Dr. Brugada, in Barcelona, for whom one of the often fatal arrhythmic disorders associated with sudden death is named. I learned that in both Italy and Spain, all children, particularly boys, are screened with an EKG, looking for these uncommon, yet potentially deadly undiagnosed potential cardiac rhythm disorders. Apparently, many of these young people who go on to experience sudden arrhythmic death are as asymptomatic as Daniel was. In Italy and Spain, a routine EKG is certainly done before anyone is permitted to play athletics. In the US, health practitioners decline this, because our physicians believe that too few cardiac conduction disorders will be found to justify the expense for all children of 12, or even just all boys. The reality is, is that sudden cardiac death in teens and children is not as rare as many physicians would have us believe. No uniform records of exactly how many child or teen sudden cardiac deaths occur, but they are estimated to be 7,000 a year, in the US. I have met several parents in my own area who have lost children to this very issue, and I am located in a very rural part of Virginia. The fact is, that if we spare even one family from losing a precious child with no notice, then a screening EKG would be worth the hundred dollars paid.
My husband and I, and our three other biological children, will never attend Daniel's high school, or college graduations. He will be absent from our other children's weddings and also from his own. There will be no grandchildren someday visiting us along with a grown Daniel and his wife. His many friends remain devastated. If something could have been done to prevent his loss, then it should have been.
In addition,in the US, there is no standardization of autopsies for children or teens who are afflicted by sudden death. There is broad variation in the amount of work which may be done following sudden death. In fact, if we had not aggressively obtained our own immediate autopsy at a major medical center, doing one at all, was declined by our local medical examiner. Daniel had no prior medical history other than some food allergies as a small child, which according to his allergist, had been outgrown. His death was completely unexpected. An autopsy was a reasonable course of action, and he deserved an automatic investigation into what happened to him. Had we actively pursued and had we not agreed to pay for one in another jurisdiction entirely, one would never have been done. Daniel was failed by a medical system which considers the loss of " a few boys" annually, an acceptable loss. He was failed by an American Academy of Pediatrics which does not consider Sudden Death Arrythmic Disorders an important focus for pediatricians. He was failed again by a system which in my locality would have blocked an autopsy for anyone but a wealthy family. In our case, because no cause of death was found, Daniel's case was made a teaching case, and consequently, we were never billed for the autopsy.
Other things you may wish to research or
read about:
Long QT Syndrome Wolff-Parkinson-White Syndrome Brugada Syndrome SADS (Sudden Arrhythmic Death Syndrome)
This is supplemental information from Dr. Mehmet Oz, a cardiac surgeon, and medical television personality, as reported by his fan base.
#1 Sudden Killer In Children – Death By Sudden Cardiac Arrest
By DrOzFans on April 22, 2010
Doctor Oz did an episode on the number one sudden killer in children- Sudden Cardiac Arrest, which causes the sudden death in children. Cardiac Arrest in children is almost always fatal. What causes these kids to die? What are the warning signs of Sudden Cardiac Arrest? If you have children, you must read this and send it to all of your friends and family members with kids! sudden cardiac arrest
Dr Oz was joined by Dr G, Medical Examiner on Discovery Health, to teach us about sudden cardiac arrest – the number one sudden killer in children. One moment your kid can be full of energy and running around and then suddenly his or her heart can stop beating and stop pumping blood to the brain or other body parts. There are often no symptoms or warnings right before the Sudden Cardiac Arrest attacks. Sudden Cardiac Arrest is not the same thing as a heart attack. There are over a dozen heart disorders that can cause Sudden Cardiac Arrest. Of the 7000 children that go into Sudden Cardiac Arrest each year, only 5% survive. Death is preventable though if you know that your child has a heart condition. These are not kids that look sick or chronically ill.
Sudden Cardiac Arrest Causes:
1. Enlarged Heart
A normal heart for a child is 300 grams, but their heart can get 2 to 4 times as large and as the muscle get enlarged, it can cause your child to die. Overtime, if it is a congenital problem, the muscle wall in the heart will thicken and want more blood supply, which makes the thickened muscle very angry and irritable if it does not get what it needs.
2. Arrhythmic Heart or Electrical Heart Problem
Arrhythmia, or an inconsistent heart beat, is an electrical heart problem that is often genetic, but an autopsy can’t find this problem.
Doctor Oz told the story of a young girl named Sarah who was 12 and turning 13 in a few weeks. Sarah was on her summer vacation and was taking a junior lifeguard course, when she asked her mom if she could play at the waterpark afterwards. Shortly after that, Sarah’s friend called and said that Sarah had collapsed. Sarah ended up dying of Sudden Cardiac Arrest, and her mother is just left with a locket of Sarah’s hair and her old swimsuit.
Sarah had some signs of Sudden Cardiac Arrest, because she told her mom that her chest hurt and she felt a tightness in her chest when she played sports that involved running. Her mother took her to the doctor, but he listened to her heart and just dismissed it.
Dr. Asif Ali did a test on a group of 6th graders and found that by doing some simple tests such as an echocardiogram, he was able to find 7 children with heart conditions, and 2 kids who needed medical intervention.
Sudden Cardiac Arrest Signs & Symptoms
1. Family History
You must be proactive and know the genetic risk factors and family history.
2. Fatigue
3. Heart Palpitations
4. Tightness of the Chest
How to Prevent Death by Sudden Cardiac Arrest
1. Know Symptoms Above
2. AED (Automated External Defibrillator)
Make sure you have an automated external defibrillator at your child’s school. Sarah’s parents got the government in Texas to pass a law making all schools have automated external defibrillators and recently 2 children in Texas were saved with the AED’s.
Also, if anyone in your family under 60 dies, you must have an autopsy done so that you can determine the cause of death, because it can dramatically help future generations and your kids to know their risks.
Please share this information.
___________
Daniel had no clear symptoms. He had no clear heart abnormalities on autopsy. The conclusion that a heart rhythm disturbance was responsible for his sudden death was concluded by pathologists based on
a.) a clean autopsy b.) a failure to respond to immediate CPR and 2 spaced injections of epinephrine. c.) grandparental history of heart rhythm disturbances. (Although most grandparents died at very advanced ages) d.) He had played soccer the day before his death. e.) He had a viral syndrome (flu) about a month before his death, when his grandfather passed, but he was very nearly completely recovered when he experienced sudden cardiac death.
This is an excellent source of additional information:
Most social workers discourage grieving parents from adopting a child, even years after a loss of a biological child. Firstly, children available for adoption come with their own package of grief, sadness, insecurities and will be doing their own work growing up, often for years following their own chronological maturity. Most therapists and most social workers simply feel that a family who has lost a child, will be too embroiled in their own loss, and this might motivate them to expect too much from a child who may always be damaged in some ways, or may at least be damaged in terms of attachment abilities. Some feel that the prospective parents may expect the child to "fit right in" the way their own child was remembered to have. Still others feel that adopting a child after the death of a child, is a strategy of avoiding the complete grief which must eventually come. A few feel the family will be drawn back through their grief again and again as their newest child passes through a stage of growth and inadvertently reminds them of their own loss.
When Daniel was five, we had a child here as a foster child that we had hoped to adopt. The child was here as a foster, to receive medical care and was mentally ill, and ultimately, though it was not our choice, the workers felt that this particular child would be better served by moving on to a family without other children, who had experience with children with serious psychiatric issues, and so he moved on. Daniel, even at five, thought that we should seek another child for the purpose of adoption. We were offered several afterward. Daniel's thinking was that we helped the first child, but had to let him go to a family who could better meet his needs, but that we should be open to providing a family to a child who was in need. We liked Daniel's applied Christianity, but following the fiasco where Daniel had been endangered by the foster child, we did not want to try again, and so for years, even though Daniel often asked us to reconsider, we did not.
When Daniel died suddenly, I heard loud and clearly that we should try to provide a home eventually to a child in need. I didn't really know that anyone would be sent here, but I knew that we should be ready. My husband took a little longer to arrive at the same place, and want to proceed, but soon after, he did. Of course, no rational agency, no competent social worker updates the homestudy of a grieving family, and sends a child right over. A homestudy with such a complication, can take a long time, if done correctly. Our homestudy update included a lot of questioning on why exactly we would consider adoption now.
The reality for us is that grieving will be hard, but that it will never end. Unless Daniel is coming back to us, we must deal with his physical absence from here until our own passings. Yes, there will be a time where grieving is less acute, but it will never end. Adopting will not change that grief, it cannot. No child can substitute or pinch hit for another, whether biological or otherwise. Wanting to adopt came from being grateful to God for four wonderful biological children, and especially for Daniel, who has always been a wonderful joy to all of us, including his siblings. Adopting was about being open to providing a home, security, and the chance for an education to one of the 123,000 children who languish in the US foster care system. Although there are few in our own state, California, Texas and Florida have many available children, mostly over age 11, and many are teenagers. There is risk involved. Many of these children are removed from unbelievably terrible circumstances similar to those in the proverbial Third World,and are left with nightmares,learning disabilities, irrational fears, post traumatic stress disorder, or overt psychiatric diagnoses. Adoption was also about making our own remaining time on Earth as productive as it could be. Daniel was never a fan of waste. If we live forty more years, when what would we have done with it?
I can't completely account for why we were allowed to do what is so rarely permitted. I know that during the interviews we told them that we understood that Daniel was gone, and that we would love him, grieve him and miss him here on Earth forever. We also believed strongly that human life is short, and although after raising four biological children,we did not feel up to raising an available sibling group, we did feel a calling to help just one child. It had not been our idea to adopt someone nine months older than Daniel, but when we were ultimately matched with a child who decided to come to us, whom we call James for the purpose of this blog.The worker who placed James with us, had also lost one of her children. She understood that perhaps our grief and loss of Daniel would place us in a unique position of understanding, in terms of understanding perhaps that Jameses grief at the loss of his own biological family, would be a permanent and long lasting grief as well.I believe that we have learned that in adoption, as in life, that every decision and situation, needs to be made on an individual basis. There can be few effective generalities.
A year after Jameses placement, I can say that he is a kind and decent person. The grief of missing Daniel washes over me quite regularly. James provides another outlet, another chance to love and raise someone, who is quite different than Daniel ever was. Sometimes,when we are doing something that only James would want to do, I can almost hear Daniel laughing loudly, and saying, "Mom, I knew he would give you quite a run for your money !" James is not always what I would consider "grateful", as few children are. He does like us, have a modicum of respect for us, and who knows, perhaps love will grow. In life, whether your child is biological or adopted, there are no guarantees.
I had a strange dream last night, and I am not sure exactly what it means. I dreamt that my husband and I had bought a large family home that had been repossessed and was on large acreage. This is not something we would do, as we have built our own farmhouse and don't have specific plans to leave here. In the dream though, the house we bought had been repossessed from a large homeschooling family with eight children. They left quickly, as evidenced by tons of soft toys, dolls, dollsclothes, books, workbooks and knick-knacks everywhere. Then the home sat empty for a year while the bank had fruitlessly tried to sell it. In the dream, we bought it for very little money, and for cash in a desperately sick US economy. Although a bargain, and not an old home, it needed a great deal of cleaning, some repair, and interior painting. In the dream, our other children were staying with friends and completing activities and school, while Daniel was with us. My husband cleaned the large master bedroom suite first,and Daniel would be staying with us in our room for a couple of days, on a large mattress made up as a bed there, so that the dust and mess would not aggravate any asthma. I got the impression that in the dream, he was about eight years old or so. Everything in the house was locked or had unusual keys. We had not received an actual key to the house, and had been entering through a window. We had waited to call a locksmith because we believed that we would eventually find a cache of spare keys, which we eventually did. In the basement, we also found a Liberty Safe locked tightly. As we cleaned, we decided that we wanted to return all the personal possessions to the family who had lived there before. There was nothing extremely valuable that we knew of, but much of it was the type of thing that would have been important memories for the people who had made them. There were lots of hand knitted and hand crocheted clothes for bears and dolls. We decided to clean and box all the personal stuff, and try to return it all the the prior owners. I was wheezy as I cleaned out everything and put things away. I remember feeling happy because Daniel was with us, and our other children were safe, but I was sad that another family had lost the home they had loved and had had such a high mortgage on. The more I cleaned, the more sorry I felt for them. At that moment workers arrived to help us paint the interior of the house. They came from the area of the house. When I asked them whether they knew where the family had gone,and they said, "Down South". I told them I wanted to return their personal possessions. They told me they had never been heard from again. We resolved to keep their things in the attic for them. I awoke to the knowledge that Daniel is not with us, in the flesh anymore, and certainly would not be around eight years old, even if he were. I was glad that my sorrow concerning a family I had never met was not real. I realized though, that if they were all together and all alive, then they were in fact more fortunate than we are just now, having Daniel away from us. I did enjoy happily tucking Daniel in, as we did when he was about that age. I don't know if the dream acknowledges many financial losses which are occuring to families all over the US, or whether Daniel, in dreams, finds ways of spending time with us both. Oddly, my husband dreamt about him also last night also. In my husband's dream, Daniel was sitting in a high chair talking to us. It's hard to know sometimes, what is a tired brain talking, and what is prophetic in some way. _____
Incidentally, the house pictured above is not the house in the dream, but the picture represents well the "nook and cranny" nature and feel of house that was in my dream. ______
I realized today, quite accidentally, that March 2 was Karen Carpenter's birthday. I met Karen and Richard once, I remember well, on August 5, 1973 or 1974. (I was either fourteen or about to be fourteen) at Allentown Fair, in Allentown, Pennsylvania where they were performing. She looked thin but well at the time and seemed to be drinking Pepsi for energy that day. They really were musical trendsetters, and really should be inducted into the Rock and Roll Hall of Fame.
I still remember where I was when I heard, on the radio, that she had died. I had recently purchased a first home, and was driving from our new house, to a hardware store for hardware in order to hang pictures. It was years before I knew the entire story. She experienced a cardiac arrest in a bathroom and was discovered first by her mother. She did not respond to CPR. How ironic that twenty five years later, I should find my own young son, in cardiac arrest, in a bathroom, who does not respond to CPR. Daniel did not have an eating disorder, but it hammers home the fragility of heart rhythm, and the fragility of our lives on Earth.
In honor of Karen's birthday, I am including a song she did independently, which is not well known, and is clearly a departure. Karen, I wonder if you could do me a favor, and spend some time where you are with my Dad and with Daniel. They both know of you. You are still very much remembered here on Earth,even by those you met, only once. Happy Birthday.
I had a routine endocrinologist's appointment today, with a physician I consider a friend. She is a professor of medicine, and one often sees resident physicians at her practice first, and then, she arrives afterward. She was very kind to me when Daniel passed suddenly, and I will not forget her kindness.
I went today to the same woman doctor, and was seen first by a female resident in psychiatry. This is not unusual, because many patients with hypothyroidism often first present with depression, and so, since a psychiatrist is a physician who assesses both the medical reasons for things as well as the psychologic or mental issues which have contributed to illness, endocrinology is a rational rotation for them. Since my doctor is a recognized expert in her field, working under her is an honor. Still, being interviewed first by a psychiatric resident,took me by surprize.
In the course of the lengthy visit, it was clear from both the psychiatric female resident and my own endocrinologist, that they wondered if I had moved along sufficiently in my grieving of Daniel. I likely did not show this, but I was angry. Unless Daniel is returning, then life for me, my husband and our family is forever changed. My doctor's thinking that "It was two years ago now" doesn't really take into account many things. A family who loses a child, will likely find their new normal, generally after the first year, but they likely will never find the joyous uncomplicated times they had when that child was alive. There will never be innocent days completely immune from triggers that will allow you to recall your precious child or teen, and then also recall a grain of the loss and the ache you have as he is not here. You will likely always remember why, if in fact, you know why, your child is no longer on Earth with you. Part of me will grieve Daniel, and for that matter, my father, as long as I am on Earth and still draw breath myself. My loving and missing them does not make me less able to live life, give and receive love, and be a positive fixture in the world. In fact, it might be part of why I am all those things.
What I did learn is not to level with my physician.From now on, I will discuss the issues which relate directly to thyroid function. Being able to swallow easily, not being excessively cold, hair and nails growing as would be expected etc. Apparently, it makes people/physicians uncomfortable to hear that medically I am functional, but that I still have heartache.I am not depressed but I AM chronically sorrowful. Who would not be? I will save my feelings for those here, and for parents who know only too well, the path we walk. Frankly, I would not wish knowing what the loss of a child is like, on anyone anyway.
