Happy Twenty-Fourth Birthday, Daniel

                 Sometimes it seems as if I am sprinting through this life. I can remember the day you were born as if it were yesterday. I was actually glad to be in the hospital that day, because we were about to have a third day of nearly one hundred degrees.  This year, it is actually cold for what would have been your birthday. This week, had you remained here on Earth, you would be twenty-four years old.  I can barely imagine what life would be like had you been able to stay.  You would be through college, and either working or you would have started a business as one of your brothers and your father has.  You might have had your own home by now, or you might still have been at the farm with us, while you saved money in order to launch a new business.  You departed this world twelve years ago, which means that later this year, we will pass a day in which you have been gone from this Earth longer than you were actually here on it.  The twelve years you were here are very memorable to me and to the rest of the family and we talk about you all the time.  Your nephew is now five, and although he is not like you at five, he is a little spitfire. He is full of energy, and ideas, and he knows all about you.  He is especially fond of your CD and DVD collection, and I really do try to protect them from becoming sticky.  Sometimes, I think that I should give some of your things to him or to your niece, but I believe I will know when that time arrives, for each item.  I do know that you don't need them, and that you want them to be used and appreciated once again.    You remain a big part of our lives just as you did, when you were here.

           
 

                       By now, all of the animals you knew when you were here have passed and are home with you, except for the alpaca Warrior Princess Camellia (whom we still call Cammie) who is still here. Please let the animals with you know that we love and miss them. There is also a precious girl, named Sable who passed recently from here, that you didn't know, but that you would have loved. Please look after her.  I know she will come to find you and my Dad.     

                      I don't know much about your existence now.  I know that you know something about the happenings here on Earth.  I am grateful that you don't have to endure some of the scarier parts of life here on Earth this year.   Please know that this week, and every week, that you are not just loved by the Lord God, and the relatives and ancestors you have with you, but also by your siblings and your parents who love you and miss you more than you know.

       Remember that you are loved, wider than the oceans and deeper than the seas, always.  No matter what happens on this Earth, love endures all things, the temporal and the non-temporal.

Daniel, I Still Have a Gift

            

Wherever you go, you are likely to run into someone who is famous, what you do with that, is up to you, but I recommend you do not follow my lead.

         When Daniel was still here on Earth I remember telling him about a "gift" I appeared to have. It wasn't songwriting, writing books, singing or anything else I once did.  It's a more unusual gift than that.  I have the gift of either offending, insulting, injuring or annoying famous people.  I assure you, it's not deliberate.

                 I can't remember how long I have been this way, but I know I was this way in college.  I remember hanging up the coat of Eric Weissberg (of "Dueling Banjos fame) when he came to a recording studio very late one night to work on a project a friend of mine was producing. It was very late and I was tired.  Eric handed me a very heavy down coat that had tiny feathers protruding from the fabric. I made some joke about it that fell flat, and he groaned at me, as I hang up the coat.

                 I think it was about a year later, that I was invited to the apartment of a close friend in New Jersey, in Plainfield, and he was having a party. He introduced me to a fellow in a wrinkled blue shirt and told me he was a prince from Saudi Arabia. I was younger than my college friends and I didn't want to appear gullible. I also thought that no self respecting prince would go to my friend's red carpeted curried apartment, and so to appear not so taken in, when introduced to the prince, I said, "Nice to meet you. I'm Princess Grace".  The Prince was gracious, but my friends looked at me strangely.   Years later, while pregnant with one of my children, and sitting in a doctor's office, I saw the Prince again, in a picture in an article about him in People Magazine.  So he really was a prince, I thought.

                 Once, while we were moving from a suburban home in Virginia to a rural one, we made a stop at a full service gas station with restaurant just off the interstate. The kids and I were moving boxes of toys and gardening tools that day, and we were all dressed in work clothes. We stopped at the gas station in order to stop for ice cream. Daniel was only about one. I noticed a man, dressed in casual black a couple of tables away, eating a large portion of chicken strips without any sauce staring at us. I am sensitive to the gaze of others and I wondered why this person was watching us so intently as I talked to the kids. He continued to stare, and I started back, as he ate his chicken strips and I ate my small chocolate cone. He looked familiar, but not in a way I could place.  Finally, my son Matt, who was about seven said, "Did we pack my copy of Edward Scissorhands?"    "Yes, I'm sure we did", I responded.  With that, the man in black pulled his black ball cap down over his head a bit farther, and stopped his stare.  It took me a couple of seconds to realize that he was indeed Johnny Depp, though he was thinner and smaller than I had imagined he would be.  The kids had recognized him, but I had not. Apparently our family had been interesting.  Then, he got up and got cash from the ATM, and went out to his rental car with a Louisiana plate, and drove off.  The kids could have told him hello and told him they enjoyed his work, but I was simply noticing that someone was watching my kids.

                Once, when we lived hear Richmond, Virginia, I took the kids to the Borders Books and Music Store.  As I pulled in to the parking space, Tim Kaine who ran for Vice President in the last election, walked across the parking space. I hit the brakes with both feet in order not to strike the man I recognized as the Mayor of Richmond at the time. He realized that I nearly hit him, and he waved an apologized.  I nearly killed or maimed Richmond's mayor, the future governor and Hillary Clinton's presidential running mate, all in one fell swoop.My family and I ran in to him a couple of times afterward in Charlottesville, and if he remembered our near miss, he never said anything.
 
                 Later, when Adam was practicing as a speed skater, in Richmond, Virginia, a young woman was watching him during practice. I said to Adam quietly, "Wow, that woman looks like a smaller version of Oksana Baiul."     She apparently heard me, and scowled.  Later that afternoon, we learned that she was indeed Oksana Baiul. I had done it again!   Adam later left speed skating as a consequence of Crohn's disease.

                I am afraid I have not changed my ways. I spent a couple of hours this week, on and off talking to Zac from the Zac Brown Band, on twitter on it's direct message feature.  It was a great conversation but I really believed that I was talking to someone assigned by Zac's publicist to talk to fans.  Eventually, I think the man became a little annoyed because I didn't believe it was actually him.  Finally, we resolved that I should ask him a test question. I had remembered on an interview that he had a favorite dish to serve at the "Meet and Greet" before certain concerts. I asked it, and he knew at once. Okay, I have to concede that the person I spoke to, probably was Zac Brown.

               I think there is probably only once when I was as gracious to a famous person as I should be, and that is because she seems to be as nice and as gracious as her voice would imply, and that would be Alison Krauss.  But I suppose I still could inadvertently annoy her next time.

               As a writer of now, six books, I do still occasionally make contact with famous people. There is a down side to this. Some of them are very nice people and deserve the accolades they have. Others, are not nice people at all. I am learning that one can admire the work of certain people, and realize quite completely that some of them are pond scum personally !
              

Daniel's Twenty-Second Birthday

    Daniel,
            Tomorrow will be your twenty-second birthday. I can hardly believe that in November, it will have been ten years since your abrupt departure, which so often seems like yesterday. I still remember all of the details about you. What you liked, what you would say, your wisdom, and your favorite games, computers and foods. I clearly remember what your hug felt like. Your nephew, who plays with some of the better items you had when you were small, knows you, by pictures and by our recollections. Sometimes, it's as if you are simply away at college.  Your friends are all adults!  Occasionally, I envy them for being here while you are not, but just as occasionally I sometimes feel sorry for them for having to navigate the trials of life, when you were called Home, and spared so many of them.
             Just as I did on that day when the medical helicopter staff finally ceased CPR, I knew that you would go to find Papa Lawrence, and Jesus, and I told you to go, and not to be afraid, and that I would handle everything from here.  I have done my best to honor that promise to you and to God, who blessed me more than you can imagine by allowing me to be your mother.
             When you first passed, I felt occasional things which led me to believe that you might still be able to hear me occasionally.  I haven't felt any of those in a long time, but I know you have other concerns and important tasks with God.  This week, I was thinking about you and wondering how often you think of me. That song you used to like that was a hit when you and I used to drive to places in Charlottesville when the older kids were in college there, came on the radio. I haven't heard it in years. I'll look it up and place it at the bottom of the page. Something about "A Hundred Years to Live", by Five for Fighting.  I took it to mean that you knew I was thinking about you, and darling, I wish a hundred years is what God had given to you.

           Happy Birthday and All my Love,


                 Mom

Ugo Ethiogu Dies

                   

               It has been announced that famous football (soccer) player Ugo Ethiogu has died of a cardiac arrest during practice at Tottenham in England, last Thursday.  Ethiogu enjoyed a very successful career as a soccer player for both England and for Aston Villa.

                 He was very successful as a soccer player and as a personality and was gaining credibility and great popularity as a coach.

                 Ugo was married to his wife Gemma and they had two children, Obi Jackson, a son, and Jodie, a daughter.

                 Cardiac arrest of the arrhythmic variety afflicts those of any age, and may especially afflict those who hearts are pumping rapidly during exercise during sports.  This is not the first sudden death of an accomplished soccer player. Piermario Morosini died in 2012.

                  We send our prayers to his family and to his children.





This is more detailed information on Ugo Ethiogu than I can possibly tell you.


Information on Piermario Morosino

The Dance With Ondansetron (Zofran)

         

        Zofran is the brand name for a drug whose generic name is Ondansetron.  It is a prescription drug often used for severe nausea and vomiting as often seen in viral illnesses of the stomach or "stomach flu". It may also be used in conjunction with cancer chemotherapies which can produce severe nausea and vomiting.
It is occasionally used to treat hyperemesis gravidarum or the severe abnormal exaggerated upper gastrointestinal response to the hormones of pregnancy.  It is not indicated in the treatment of normal nausea and vomiting in pregnancy.  There are some occasional other uses particularly in the field of addiction and withdrawal. The drug is available as an injectable and also in an orally disintegrating tablet.


              In general, this is a good drug. It can help to prevent the admission of a patient to a hospital for overnight intravenous hydration by quelling the cyclic severe nausea and vomiting of certain viral illnesses. It can help to advance the settling of one's stomach sufficient to allow some fluids taken by mouth and this is a largely positive thing. It can help to make chemotherapy more tolerable for a patient who requires it. It can allow the patient to complete a recommended course rather than to electively abbreviate or terminate it.


              However, there are a subgroup of people who need to be particularly careful prior to using this drug. Ondansetron is noted to have the capacity to lengthen the QT portion of an otherwise normal EKG. In a susceptible subgroup of patients, this can lead to arrhythmia and potential for sudden death. Certainly anyone who experiences a rapid heartbeat or any noted change in heartbeat while taking Ondansetron should return to the hospital emergency room.

              As the parent of a child who died of a sudden arrhythmic disorder which had been unknown to his doctors and to us, why would I mention it ?   Daniel did not use Ondansetron prior to his sudden passing.  However, this may be of issue to those of you who have lost a child or family member and who have other children or family members who may have the same proclivity to arrhythmia, which may be as yet undiagnosed.   Two of Daniel's brothers have in fact, used Ondansetron for a day or so following a stomach flu on two separate years.  We did use the drug knowing that arrhythmia was a potential side effect, but the emergency room physicians ordering the drug made the decision that the benefits outweighed the risks at that particular juncturet of the treatment. Both young adults were well enough to be able to discontinue  the drug after the initial 24 hours of use.


               My reason for letting all of you know about Ondansetron is that even among the population of those who have lost a sibling to a sudden arrhythmic disorder that  there can be an appropriate short term use for the drug. You should also know that a sibling of someone who has died of presumed Long QT Syndrome should not receive this drug in the longer term.

  Make sure that any physician ordering drugs for your family or your children know that you have lost a family member to Long QT Syndrome, if in fact, you have.

              As always, just as my thoughts and memories are always with Daniel, my thoughts are also with the other parents and families who suddenly and inexplicably lost a healthy child to a sudden arrhythmic death of which there is most often, no warning.

While Sweeping and Mopping

          

             Yesterday afternoon I was working with the horses and the alpacas. I was moving alfalfa, sweeping out stalls, rinsing out water buckets as I listened to the radio I tend to keep on in the day for the animals.  Only one station stays on playing calm music and interviews all through the duration of the day.  It's not my favorite station but it goes a long way to keeping animals calm especially when there is bad weather which is amplified by the tin roof.   Yesterday as I swept I listened to the story of a young boy who had a serious cancer at age ten. His mother had moved Heaven and Earth in order to get him into some experimental studies.  From the interview he was a precious boy and for a moment I understood his mother's quest to do almost anything to keep her son alive.  As I listened, swept, mopped and distributed a coat of thin pine shavings to a shiny stall floor, I was hopeful.  Certainly such a promising drug regimen would work on children as well as adults. I expected to hear good news, and so I slowed my work for a moment to listen. I was unprepared for the news that the boy, Joey, had not responded to the drug and had died the day before Thanksgiving.  All at once I recalled that Daniel had departed from us the day after Thanksgiving.   The feeling sat there in my abdomen as if I had been gently kicked by a short horse !    I was especially saddened to hear the interviewer ask the mother if she had regretted continuing treatment when the doctors had given them the option to go home to die and to see his friends.  She had decided to stay the course waiting for her miracle, and this time, it had not paid off.  At first she said she thought she made the right decision, and then even within the same sentence, she changed her mind.  This is a doubt I think she will have all of her life.  Sadly, when we lose a child every choice we ever made will be periodically second guessed.   Why did I not take Daniel to a cardiac electrophysiologist at twelve ?   Because I had no idea he would develop a cardiac electrophysiological issue.  Why did I not let him stay out later a couple of days before his passing ?  It would have been unlikely to have made any difference, and he would have enjoyed it.  Why did I not divert money from other things we did here, and take Daniel to Europe ?    Because, at that particular juncture of his life,  he would rather have stayed here on the farm with his siblings, his animals, and his computer !  Parents who have lost children will always second guess the choices we made with them   I suppose this comes with the territory.  There is something we can do though. When we hear of someone who has lost a child, we can support them in the choices they made.  We only have limited information when we make some of the choices for our children. We don't have a crystal ball. We don't know all that will happen in their future lives or in our own.  We need to work to understand and accept that we made the best choices for our children with all of the information we had at the time. We would have done nothing less for our beloved children.  My prayer yesterday is for Joey's family and particularly his mother.  May she come to know that she did everything she could for him in a difficult situation, and that he knew that.  This is what I wish for all of you who come to Daniel's blog for some crumb of wisdom.


This is a link which would allow you also to listen to the story of Joey Xu

Please see: Remembering Kenji Goto

           Please see my post for today on one of my other blogs:

 Remembering Kenji Goto


     Daniel would applaud the many efforts of this brave humanitarian during his 47 years on this Earth.








  

Found: A Picture of Daniel in a Blond Wooden Frame

       

Even in grief, the happy memories should never end.

           This week I have spent some time taking care of my new infant grandson while his mother has been working, ensuring excellent insurance coverage for his cystic fibrosis.  A great deal of his care is nursing care, rather than simple infant care.  Much of it is also time consuming.  Toward the end of the week while he was sleeping in the afternoon I had a chance to go through some things I've had in boxes.  It is time to either decide to give some of the more lovely momentoes of our children's babyhood to my daughter, or to donate them. We simply can't keep everything, although believe me, sometimes I have tried !   It's time to free up more storage space, at the very least.


           In one box I found a china half moon lamp which sat in my eldest son's nursery during the first year of his life.  I found some pewter banks shaped like a carousel which were baby gifts for one of our children when they were tiny, although I am unsure who gave it to us, or which baby was the lucky recipient. I found all manner of child safe night lights. At the bottom of the box I also found a perfect framed picture of Daniel which oddly was taken at about the same age my daughter's baby is now.  It was almost as if Daniel was wishing to say, "I remember when we were together and you were taking care of me at his age !" This framed picture sat in Daniel's nursery on the dresser in our home in the suburbs,  until we moved to our first farm, and then, for a time, Daniel shared a bedroom with our other son Matt.  Many of the things in his first room were simply never used again, and then so quickly weren't really age appropriate any longer.


            I thought that perhaps in taking care of my grandson that the moments of caring for Daniel as a baby might blur, and I might forget details of Daniel's babyhood.   Strangely, this has not at all been true.  Just as my other children were, each of them are distinctly different individuals. In fact, caring for my daughter's baby has actually helped me to remember Daniel's babyhood in detail as well as the distinct differences between each of my children in babyhood  just a short time in much more detail.


            I am not yet sure what to do with some of the articles I found in the box, but the blond framed picture of Daniel at four months will have to go in a position of honor where I see it from time to time. Daniel, your beautiful flesh suit may not be on Earth now, but it was, and I plan to remember each of those days as best I can, through the remainder of my own days here on Earth.

Unfinished Online Business

Dear Daniel,

           When you passed so suddenly six years ago there were many things I could not do, and in the shock, many things that were not immediately available to my memory.  You loved the internet and had quite a life there. Although I had been a part of setting up those accounts initially, because you had been so young, I not only didn't recall your passwords, but I couldn't remember where the paperwork where I kept them had been.  This was sad because you completely disappeared from your internet haunts and from computer gaming with no explanation to internet friends.  Some time later your brother Matt did inform some of the groups where you and he had been members, but I have always felt that I failed you by not properly managing your internet legacy.

              Today, while getting a jump start on early Spring cleaning, I was working on filing and throwing away a stack of papers I found in a file stuck between furniture in my room and the bed. From the receipts and paperwork most of which I threw away, it had been there for quite some time.  One of the papers I found was the registration confirmation to your e-mail account.   I had long since forgotten your ID and your password was penciled in below it.   You hadn't used this account since November of 2008.  Well, I am assuming that because this is when you ceased to occupy your flesh suit here on Earth.  I don't know why, but I decided to log on and see if your account still exists.  Apparently, following a period of disuse, the id again becomes available.  I decided to reregister all your information as it was,  in case any of your friends ever try to contact you, in future. At least I could tell them what happened.   Everything we had registered before is now entered, except that they needed a longer password that we had used initially, and they needed a cellular phone number. I used the same pseudonym you has used before.

              I don't really know why I did this. Perhaps in some small way, having your e-mail address reactivated means that you never really died.  Maybe you just exist on a plane of thought and energy and can check e-mail telepathically.   Maybe in some way, you are aided by having your e-mail activated.  Maybe you will simply recall how important you were and are here among the family you have still tied to Earth.

             Feel free to shoot me an e-mail.   With an e-mail address, you could review the book I wrote about you.   In all seriousness now, you are, and always will be, truly loved and truly missed.

The Six Year Mark : The Music Cafe Closes

     

                       Tomorrow, Daniel will have been gone from Earth for six years.  He departed on Black Friday, and this year, Thanksgiving falls on the 27th and Black Friday, once again on the 28th, just as it did on the year of his departure.  These subtleties are not lost on me, and I am afraid that I might never cease to notice these.

 

                   Like most families, Daniel and our other children had routines. We had things we liked to do regularly, and we had regular outings.   When our two eldest went to college,  Daniel and his older brother Matthew and I continued to home school.   We also had a number of diversionary activities which kept our lives busy.  Weekly, I would take both boys into town to the library where their own laptops could access the super fast internet connection.  They would do some schoolwork and research there, but I was fairly well aware that most of the several hours a week there was spent internet gaming.  They loved being dropped off there, and I used the several hours to run errands, fill prescriptions, pick up dry cleaning and alterations, and get to the bank.   When I picked them up Daniel especially wanted to go to the music cafe.   The music cafe was a business created by a young man who had graduated from the music school at the university in Richmond.  He found a way to combine his love of music, of business and of food in one endeavor.  The music cafe is a lovely rustic cafe which has a stage. It provides great coffee and tea, breakfast, lunch, and a light dinner.  Several nights a week both local and some big names perform in the fairly intimate venue.  The back of the structure provides music lessons by the owner and other seasoned performers and could actually be used as rehearsal or recording space. One can also buy guitars, guitar strings and other musical goods.

This is the owner and his family.  They were kind to us when Daniel passed.

                 Daniel especially,  used to love to go to this cafe for a soda and a brownie after the library.  Occasionally we would have a meal there.  The owner has a lovely young family who would often be in the cafe from time to time. Of course, now that Daniel is gone, I wish I had taken him there more often and sprung for the meals rather than just allowed this place to be a treat station with music.

                This year I read in the local paper that after eight busy years, the music cafe has closed. It remains intact and up for sale.  Daniel would be most unhappy about this, if he remained here on Earth.   My hope is that even in such a difficult economy someone else decides to take over and keep this point of light and of music open for other families.

                It seems sometimes that as each year passes since Daniel's departure that more and more things he cared about seem to depart or evaporate one by one.  The music cafe was something I had hoped would remain here for a long time.

              Daniel would want me to say,  Happy Thanksgiving.

Update:                    Just shortly after their closing, a new group took over and reopened the music cafe. They have revamped the menu and have a different vision. My hope is that this wonderful place survives and thrives, almost as if Daniel could visit  when on furlough.

Black Friday, Indeed

             

Daniel, when he still occupied the realm of Earth.

         I do quite well living my life most of the time.  It helps to stay busy and to have many interests. I often tell myself that without Daniel that in a sense I need to live and love for us both.  I try to care very lovingly for his remaining animals, many of whom are very old now. I also try to be supportive and loving to his siblings, my other children, whom he loved dearly, but with all the competition and petty conflict which arises between siblings, even in normal families.  I miss my father, as well, but if we have good parents,  all of our lives we are being prepared for the day when our parents will leave the Earth ahead of us.  Of course, we are never prepared when our children do.  Most of the year I do well, and then there is this year.

                        At the end of November, the day after Thanksgiving it will be the infamous Black Friday.  It is the day when Daniel got up in the morning, dressed, tried to get us up bright and early to Christmas shop, and then collapsed and died just moments after we agreed to get up,  and he had completed a joyous breakfast.  Of course, to the rest of you, especially in the US,  Black Friday is the retail holiday, the day after Thanksgiving where many stores balance sheets turn from red solidly into the black profit margin region as the Christmas retail season pushes into full force. It will never be that again for me.  This year will be the first year when Thanksgiving once again falls on the 27th of the month, and then Black Friday falls on November 28th, the actual day of Daniel's passing.  Of course, I am dreading this day, the anniversary of the day in which Daniel's energy evaporated in a witnessed instant from his body, and never returned, despite CPR, despite the use of an AED, or a medical helicopter staffed with some of the best emergency staff that could be assembled.   I can't help but wonder sometimes that if I stood in the bathroom on November 28th this year, six years after Daniel's departure, at the exact moment when his heart beat for the last time, if I might see him, or perhaps a parting in space and time that would provide just one last hug, or a word of wisdom or encouragement from Heaven.

                    I know I am being greedy, but a mother's love and the yearning that accompanies the death of a child, especially one not anticipated, leaves us sometimes thinking this way.  My wanting to hear from him is truly greedy because I think I heard from Daniel earlier this month in a dream.  My daughter's first child, a gorgeous baby son who carries Daniel's middle name as a moniker,  has just been diagnosed with cystic fibrosis, and at only  a few weeks of age, already has pancreatic insufficiency.  I told myself that although this is still classified as a terminal illness, that research and management is far better than it was prior.  I have also told myself that it may be better to have a child for whom you know time may be limited, than to lose a child whom you believed would live to be a grandparent.  It was within this veil of sorrow that in a dream recently I had lunch with Daniel.  He  told me that he knew this child before he was born and that this child's course will be supported not only by God, by Daniel, and by our family who has already passed  We sat eating grilled cheese sandwiches with pickle chips and coca cola.  You would think Heaven stocked better food, but perhaps to Daniel, this was heavenly food.  He sat with me and was barefoot with gray slacks and a white cotton long sleeve t-shirt.

                 And so, we enter the six year anniversary of having lost Daniel, with  new worries, a new sorrow, and a new reason to work hard to remain healthy and to stay on Earth ourselves, in order  to lend a hand to Daniel's beloved sister and her new family.    Life does have to go on and sometimes it will be sorrowful,  whether we wish it to stand still, or not.

This is a bit more encouraging than my post

Owl City featuring Britt Nicole                   "You're Not Alone"

Sudden Arrhythmic Death Takes More Lives than We Recognize

                  One of the things I have so clearly learned from Daniel, is that people can die without a prior medical history, and that sometimes,on autopsy, no actual cause can be found.  In these cases, a pathologist MD provides a presumptive diagnosis as a cause of death.  This was the case in Daniel's death, and it was also the case with the woman above.

                  Sarah Goldberg is a forty year old actress who is probably best known for her story line on "Seventh Heaven". On September 27th she was vacationing at her family's Wisconsin cabin and was working with her computer on her lap. She fell asleep and never woke up.  Her autopsy did not show a clear cause and so her passing falls within the category of those who are felt to be presumptive deaths from an arrhythmic (disturbed heart rhythm) cause.

                   Sarah had planned to study medicine but had a small part in the Julia Robert's film "My Best Friend's Wedding."  She went on to appear in many movies and television programs including Jurassic Park III, Judging Amy, Training Day, CSI, Without a Trace, and  House.   She was also known professionally as Sarah Danielle Madison.

                   She was a graduate of Amherst College and is said to have been a lovely person as well as a stellar athlete. She is highly intelligent and held a degree in Microbiology.  She had many interests while here on Earth and had an interest in alternative medicine.  May she understand all that captured her interests and imagination now.


                 We send our condolences to her family.


                                             

Sarah Goldberg as she will be remembered.

Milestones Daniel Might Have Missed

          

(Photograph: Copyright 2014  Krehbiel Fotographie.)

                We miss Daniel, in the flesh, every day here.  Each day there is something happening he would have especially enjoyed, or sometimes there is a holiday and  we have some type of dinner or food he might enjoy.   However, we know that tomorrow that Daniel will be looking in on his sister Stephanie.   Stephanie, in the photograph above,  is our eldest and Daniel is our youngest child.  They were especially close during Daniel's time on Earth.  Stephanie is a degreed professional artist and photographer.  In the photo above, she is experimenting with photography in a mirror.  It's funny that in a quick glance I am reminded of how my mother looked as a twenty-something in pictures.



                 Tomorrow, we reach one of those milestones that Daniel might have missed.   Stephanie, a juvenile diabetic from young childhood, will be admitted to the hospital to have her first child.  I know that Daniel will be there and will be sharing in the joy of those moments.

Our daughter, nine months pregnant, taken yesterday. (Photo: Copyright 2014 Krehbiel Design)

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                      Prayers and good wishes are appreciated as she enters the home stretch of a high risk pregnancy and delivery.   I'll let you know if I hear echoes of Daniel while I am there.

                   Love to all,

A Miracle for Erik's Family

        

Erik, (on the far left) and his family)     (Photo: Kirk Barron- Appeal-Democrat)

             This week I read the remarkable story of Erik Shieve.   Erik is a sixteen year old high school student who lives in California who was not known to have any medical problems.  On May 24th, 2014,  Erik had just played in a basketball game.  He went to sit down and promptly collapsed.  He was observed to be having a seizure. He was not breathing and did not have a heartbeat.  CPR began at once, but there was no AED at the venue !     Two physicians initiated CPR and  continued to provide it for ten minutes, until he could be transported to a hospital three miles away.

              Most of the time, a sudden cardiac arrest in a teen that does not receive aid from an AED within several minutes, results in a sudden cardiac death.  Erik endured a cardiac arrest with continuous CPR for ten minutes, and by the time he received a shock from a defibrillator, he would, most times, either not have survived, or would have experienced significant brain damage from having endured a sustained arrest for such a duration.  This day however, the miracle we as parents hope for in such circumstances, came.   Eric was not only resuscitated after ten minutes, but was talking coherently when his heart returned to a normal rhythm. He was then transferred to Intensive Care Unit.    The fact that Erik had survived and was talking  was relayed in a wonderful text message for those at the game from which he had departed.  For each minute that defibrillation is delayed, the child, teen, or adult in  sudden cardiac arrest, even with CPR, has a 7-10 % decrease in survival.  I am thrilled for Erik and for his family.  Erik was ultimately transferred from the ICU to another California hospital in order to receive an implantable internal defibrillator.

               I cannot hear stories such as this without my heart skipping its own beat and traveling back to the day, now five and a half years ago, when our beloved Daniel who had played soccer with college aged students the day before, at a family gathering, collapsed in the bathroom and also experienced an apparent cardiac arrest. When my husband and I got through the locked door, there was evidence of a seizure. (When there is a sudden cardiac arrest and a complete and sudden cessation of oxygenated blood to the brain, there is often a brief seizure, often with vomiting, and the patient often falls forward while collapsing.)   I started CPR at once and our daughter called 911 requesting the medical helicopter to the farm and telling them there was a cardiac arrest in a twelve and a half year old boy.   Although I gave two doses of epinephrine in total, we didn't own an AED, why would we have ?    The deputy sheriffs who were first to arrive, had one and tried it repeatedly,as per protocol, but by then we were likely at the fifteen minute mark.  I had done CPR continuously until they arrived and his color was very good, but that day,  there had been no spontaneous return of breathing or of heartbeat.    We did everything we could possibly do. I really did expect that miracle for us !    Daniel got CPR almost immediately. He received two doses of injectable epinephrine (because we had it for those family members who are beesting allergic)    All that was missing was the AED.  That day, the 7-10% per minute decrease in survival piled up too quickly.  Our miracle didn't come.  My being an RN who worked critical care and who had successfully resuscitated more patients that I can quantify,  counted for nothing that day.  I did not have the one piece of equipment that may have made the difference that day.    I still can't quite believe that our healthy, vibrant son Daniel, left us that day.  It often feels as if he is simply away and busy on some pivotal project.

              We do now own an AED..  It is an expensive proposition for a family to have.  The patches and the specialized battery should be changed each year, at a cost of a bit more than a hundred dollars.  The software to the device sometimes needs updating.  Ours has modes which allow it to operate for babies, children and for adults, although not all AEDs are designed to operate in this fashion.  Sadly, it may never be used here again, and was notably absent when the day when it may have been the only thing that would have allowed Daniel to remain with us and finish growing up, ultimately go out into the world.    However, an AED should be at every practice, every sporting event, every school, and every governmental building.  I am sure Erik Shieve's family would agree !

Goodbye, My Friend.

               

                 I have a dear friend who passed  this week unexpectedly, and  rather suddenly.    She had been treated for cancer, and that treatment was going well. She was expected to be cancer free and was working on gaining strength so she could return to living in her own country home.  She died of an unexpected blood clot.

                     Our family and I have been lucky enough to have known her for many years.  She was our rural village's post mistress, until her retirement from it last year..  In our very rural area, mail is not delivered to the farms and rural homes.   We go to the small rural post office where we pick up our mail, sometimes daily, if we are out and traveling in that direction, or sometimes a couple of times a week if we are not expecting anything.   Our friend has been with us through a lot of living.  She has taken delivery of chicks and animal immunizations  for us there, and would call us to come pick them up.  She used to see Daniel every day when I would break from homeschooling to take him for a break in the morning, and we would stop in.  They are a fine family that helps to make this area one of the places that is worth living.    She was the first person to arrive at the celebration of Daniel's life after he passed so suddenly.  She listened to each of our passages as we waited to hear what could have caused the unexpected passing of our beloved boy. She grieved his loss with us. She celebrated with us when our daughter bought her own home.  She cared about people and was always there for them.   Over the years we got to know her wonderful Dad, her children, and her grandchildren.  Without her, this place will be a little less colorful, and a lot less loving.

                 In the last eight weeks, her father and brother had passed and it seems as if God had made arrangements for them and was calling them home.   She loved America and was concerned about many of the changes we have seen in the past number of years. She saw a lot of people and families leave this area during what is now called "The Great Recession".  There was even talk of closing this lovely rural post office and having us all drive even farther to get mail.     I missed her funeral because it occurred before I knew of her passing, however several of my friends, my family and I would have liked to have paid our respects.   I think she knew how much she was treasured though.   I once gave her a Mr. Coffee machine for the post office at Christmas.  She liked costume jewelry, and I gave her some at Christmas and on her birthdays.  My family and I were present for her at her Dad's funeral recently, and I think she appreciated that. He too was a remarkable man.

                 Treasure your friends, your extended family and your family.   The mission to Earth that each of us are sent to, often ends suddenly.  Make sure that the people you care for, know how important they are.  Take them to lunch !

                 My friend, I thank you for being who you are.  I thank you for being the kind woman you always were to everyone.  I thank you for sharing your sense of humor.  I thank you for being the best post mistress we could have had.   I thank you for being a wonderful part of Daniel's life.  You will be remembered, and oh, how you will be missed !

Take a Look

             

         Daniel, I often think about how you would have progressed here on Earth had you remained here, rather than having gone with God at age twelve and a half, now five years ago.   I knew a fair bit about your likes and dislikes then, but it saddens me just a little to think that I might not know what you would like had you remained here. I am your mother for all time, and you are my child for all time, and so, I will never stop caring about the things you like, the causes you choose to work for, the music, and your concerns and your charities here on Earth.  I know how much you enjoyed the Sonic computer games, and "Weird Al" Yankovic's parodies of songs.  I know how much you loved helping animals in need, and delivering food we bought at Sam's Club or Costco to the food bank.  There are more food banks in our county now.  You would have to rotate your attentions and supplies to them now. You would also be surprised at how inflation has increased the price of food.

                  By now you would be eighteen.  Your friend Jordan has a girlfriend now, and I think you probably would too.  So much about you would have changed and likely embraced more of the world around you.   When you were here you weren't a big fan of female singers but I think that as you grew that might have changed.  I know that you were a fan of many genres, particularly if the work itself was well done.   I believe that you are able to see this blog, and for this reason I wanted to offer you a look at a video I discovered yesterday.     This is a Canadian musical artist who obviously has quite a background in dance and choreography from her video.   I remember that you were definitely not a fan of High School Musical, but perhaps the artistry and the writing of this song seems better to you.   As you might guess, I think she is very good.  Her name for musical endeavors is Kiesza.    For everyone else, Kiesa Rae Ellestadt, born in 1989, was a young Canadian Naval Reserve officer who got a scholarship to attend music school in Canada.  She has also attended music school afterward in the US.  An adventurous spirit with a gift for songwriting and poetry, she now works in New York and in London.  I think this young woman is one to watch.

House Majority Leader, Eric Cantor Loses His Seat in Congress

          

Eric will not return to Congress for an eighth term.

         I remember the Summer of 2008 as if it were a month or two ago.   I attended a Republican fundraiser at a large farm in which a number of political dignitaries were in attendance. As a homeschooling family,  I used to bring our children to events such as these, in part because it teaches them things about politics, politeness, and social skills. Too often children see themselves as inhabitants of a parallel universe distinct and separate from political people, when it point of fact they are not.   Since the other kids were in college, Daniel attending this particular event  with me.
        Daniel, who was twelve,  was his usual articulate self, and when he met Eric Cantor, he explained how the bank bailouts as planned, were counter to the way capitalism works.  Eric Cantor was gracious to Daniel and explained that the bank bailouts would have to occur because the damage to the economy could be catastrophic if they did not.   Daniel told him that a bank that made bad business decisions should fail, and then the people employed by those banks would start new smaller banks which took fewer risks, and that capitalism is in fact, self cleaning,  but Congressman Cantor wasn't buying.

          Only a few months later, when Daniel died, so unexpectedly, I did notify Eric Cantor that the child who at 12 1/2 had so articulately spoken politics with him, was gone.  I hoped he would remember him, and perhaps even shed some light on why our local government had refused to pay for an autopsy on a completely unexpected death.  Our family was left procuring one ourselves and agreeing to pay for it.    Eric Cantor's office never responded despite the fact that our family had met him many times and that we had worked to help him be elected in 2000.

                    When Daniel died, so much of the world seemed to go sideways.  An unqualified man was elected to the presidency.   Our new president spent money like water.  He ate lobster in Wyoming and beef in Maine.  One problem after another ensued including a continuing deteriorating economy.  Anyone who questioned the actions of the regime was accused of racism when we were criticizing actions not ethnicity.   "Cash for Clunkers" came and went.   "Shovel Ready Jobs" were coming and never did.   More and more of our friends lost their jobs, and often their homes just after. Our friends who kept their homes found them worth only about half of their initial expenditure. Selling a home in order to take another job in another part of the country sometimes meant walking away and trashing their credit entirely.    Our children graduated from universities with debt from college, and did not find jobs.  A half baked expensive health program fashioned as a precursor to National Health came in. The "Affordable Care Act" wasn't affordable at all.   Some of the people we knew lost their health insurance entirely.  Business after business closed.    The government began buying millions of dollars worth of ammunition for all of its federal agencies, and it became difficult to buy many types if you were the general public.  More and more late night, holiday and weekend actions by the executive branch continued to erode the US Constitution.   There is talk of granting amnesty to illegal aliens when many Americans born here who would take ANY job, still can't find one.  Some of our own people have been looking for work for years.  

                 More food banks appeared and most are regularly empty. More and more middle class families have been depending upon them.  Businesses close, and more Goodwill stores have opened.   Through all this time, we continued to do what we believe genuine patriots do.  We did not demonstrate anywhere, however we wrote constant letters to our Congressman Cantor and to our Senators.  We explained why we were concerned about the debt load of the United States.  We asked that Obamacare not be funded. We don't want our state's Medicaid expanded.   From Senator Mark Warner we received letters back saying that he would do his best to clamp down on guns when our letter had been concerned with our retaining our gun rights, particularly in a rural area.  He and his staff didn't even really read our letter.  Our letters back from Senator Tim Kaine sounded as if they had come from a socialist.   We had hoped Eric Cantor, our Congressman, would work to lead the charge to rescind Obamacare.  We hoped that he would be a part of the group who tried to curtail runaway governmental spending.  This never happened.   As nice a man as Eric Cantor is, he seemed completely out of touch with the wishes of his constituency.

                Today when the Republican Primary took place our family went down to the polling station and we voted for the  professor of economics who is opposing Eric Cantor.   It broke our hearts to vote against the person we had worked for all those years ago.  However, things in the US are going so badly that we need people strong enough to oppose the present regime, not appease it.    This week the present regime paid money and traded five Taliban members in exchange for a man who deserted our troops.  This was unwise, but it was also illegal because proper notifications were not given to Congress.   We have long since moved squarely into impeachment territory, yet we don't have men courageous enough to tackle these problems in our Congress.

            I know that Eric Cantor may well have been the next Speaker of the House.   I know that the votes of my family do make a difference.  I just heard that Eric Cantor lost his eighth bid to be returned to Congress.     I grieve for him and his family.    I also grieve for mine.   I pray that whomever does return to Congress on our behalf has the starch to speak honestly and with fiscal responsibility.     Daniel,  I did my best.

Meet Nancy Capelle

           

Nancy Capelle, EMT, CET

         I usually discuss sudden cardiac arrests as they apply to Sudden Cardiac Arrhythmias, or heart rhythm disturbances.  Today I would like to tell you about another type of cardiac issue which can also cause arrhythmia and sudden death.

               Nancy Capelle was a Connecticut wife and mother who commuted to a job in the corporate world. She loved her job and it meant a good deal to her.  One day, at only forty, while she was home with her two young daughters, she developed some chest pains.  Nancy is an educated woman, and had a history of esophageal spasm, which in itself can be quite uncomfortable, and so she sat at the computer expecting this to pass.  Her chest pain continued to radiate to the back, and to her left arm and to her jaw.  She was a healthy, beautiful woman of forty, who was of normal weight, and who liked to run for recreation with her husband.  She googled her symptoms before eventually calling an ambulance.  Nancy experienced a full cardiac arrest in the ambulance while the ambulance turned out of her driveway.  A diligent paramedic first tried a precordial thump, which was ineffective and then used a hospital grade defibrillator which saved Nancy's life.

               The cause of Nancy's cardiac arrest was not high cholesterol, or a bad diet, or stress, but is something called spontaneous coronary artery dissection  (SCAD)       SCAD afflicts women 80% of the time, and has a 70% mortality rate.  Yes, that's correct. 70% of the time, afflicted patients die.

             Fortunately for everyone, as a result of her experience, Nancy has devoted herself no longer to the corporate world, but to CPR, AED education and to educating others concerning cardiac sudden death of all varieties.  Nancy is now a motivational speaker and the founder of Cardiac Companion LLC.

             If anyone, particularly those in the US Northeast would like to talk to Nancy, for television or radio appearances, or as an excellent organizational or corporate speaker, this is contact information for her.  I think Daniel would wholeheartedly approve of the manner in which she is spending her time !

  

• nancy@cardiaccompanion.com

On Mother's Day

         

        I have explained in the past that Mother's Day, even before Daniel's passing never held any particular fascination for me.  I believe, as my own mother did, that I should be treated with respect and consideration the year round, and not simply honored on one allocated day.  I already have a birthday, and my family values me already.  The meager offerings of a child should therefore be spent on things they need.  Of course, following Daniel's sudden and unexpected departure, Mother's Day became a day of endurance and often, of sorrow.  Since most of our kids are grown or near it, they have each chosen to do something to perhaps soften the difficulty of the day.  I received a private recognition from each of my children.  My husband busied himself doing some chores I needed done here on the farm, and I spent the day doing exactly what I wanted to at home, which entailed organizing my disaster supply room. (Something I really need to be doing as it entails giving some things to my daughter at her home, and both rotating some stock and using other items.)   When I was finished, I spent extra time with the dogs and the horses and the alpacas.   This day, there were no tears. It was calm and I mothered both people and animals.

           My balance was upset very slightly this morning when a friend sent me an article written by a Harvard pediatrician who had lost a son.  I read her thoughts about how difficult a day it is and how she copes.  With that, the tears came. Oddly, what I took from it is that even a Harvard pediatrician can lose her child.   I suppose that in the deepest recesses of my mind I have wondered that if I had stuck to my original plan of being a physician, that I would somehow have detected Daniel's predilection for arrhythmia and sudden death and somehow have interceded.  Perhaps I have wondered that if by being a nurse, I missed the snippet of information that would have allowed me to prevent Daniel's gorgeous light of a life slip through my CPR performing hands on the bathroom floor on that terrible, terrible day five and a half years ago now.  Perhaps a pediatrician losing her child is the nod I need to realize that sometimes terrible things simply happen in this life no matter how much we love someone, and no matter how much we would be willing to do to keep them here on Earth with us.

            I hope your day was pleasant, or at least without palpable sobs.  Most years will be better.
            

Happy Eighteenth Birthday, Daniel

 

  If we had been lucky enough to have Daniel remain on Earth, this week he would have been eighteen years old.  Daniel, we have spent six Christmases without your being here in the flesh and five of your last birthdays without your smiling face. We celebrated these holidays quietly, but we still celebrated them. There are so many things I would like to have done, and had you with me while we were doing them.

Perhaps by now you would have grown in to liking sushi !

          You were so bright at 12 1/2 and had been looking at colleges with an eye to going early. I find it hard to imagine what you might be doing now had you stayed.  Perhaps you would be working on a Ph d by now.
In any event, as you know, we are all still here. We still celebrate your birthdays and the holidays with a cake and a quiet family celebration.  Please know that you are loved and remembered by your people who remain on Earth.  I love you, Bug.

Happy 18th Daniel !

 

A cake of the cosmos is probably the most fitting.

Last evening, I remembered you by making a yellow Bundt cake, and then when it was out of the pan, drizzling it with lots of lemon curd.  Your siblings thoroughly enjoyed it.

Once cooled and thickened, lemon curd makes an excellent topping to cakes and cheesecakes or as a generous glaze to a Bundt cake.  I know you would have loved this.

Daniel would want me to give you a recipe for the British Standard Lemon Curd:
    (No, you really don't need salt)

• 3 oz. (6 Tbs.) unsalted butter, softened at room temperature
• 3/4cup sugar-1 cup depending upon taste
• 2 large eggs
• 2 large egg yolks
• 2/3 cup fresh lemon juice
• 1 tsp. grated lemon zest 

Using a carrot peeler, remove the zest of 3 lemons. . Put the zest in a food processor fitted with the steel blade. Add the sugar and pulse until the zest is very finely minced into the sugar.

Cream the butter and beat in the sugar and lemon mixture. Mix the eggs with a fork and add them to the mixture. one at a time, and then add the lemon juice. . Mix until combined.

Pour the mixture into a 2 quart saucepan and cook over low heat until thickened (about 10 minutes), stirring constantly. The lemon curd will thicken at about 170 degrees F, or just below simmer. Remove from the heat and cool and then refrigerate.   I have done this very carefully using a microwave.   A percentage of the thickening does occur while cooling.

This is an excellent drizzle for shortbread, scones, pound cake, pastry tarts, cheesecake, and is divine on pancakes.

Calories per tablespoon: About 50

    Happy Birthday, Daniel !

I don't believe that Daniel ever heard the music of Sarah Slean, but she has a straight shot to some of the music of Heaven.