Tuesday, December 9, 2014

The Abyss

                  

Sometimes the decor does not describe what we feel inside.

  

               There was a film that Daniel and the other kids used to watch periodically, called the Abyss.  They enjoyed it and we have a copy on DVD somewhere in the house to this day.   However, the abyss to which I am referring, is something a bit different.

                        Each year since Daniel and my father passed, we go into the holidays with hope and positivity. Thanksgiving often has glorious weather in Virginia, often with warm winds, fallen leaves and easy travels.  Of course, Daniel passed suddenly the day after Thanksgiving, at the beginning of the Christmas season.  With the completion of the washing and putting away of the last Thanksgiving platter, our thoughts turn to Christmas, and the weather turns cold, just as it did that one cruel year in which we spent the weekend after Thanksgiving planning a funeral rather than putting up wreaths.  The cold weather which seems to come on precisely that weekend coupled with the fragrances of this time of year has almost a transformative power to take us back to the very moments when Daniel evaporated from Earth.  Thus begins our own annual abyss.   I am not saying that the holidays no longer have joy here, because we find it somehow, to honor him and to honor my father, but during the period of time which stretches from Thanksgiving to Christmas, the abyss is a continually repeating bridge from cataclysmic days and to firmer footing in which we decide that God is indeed in control and that He still intends the rest of us to remain here and live a life as best we can.  It is however, never easy and never carefree, this new normal.  These days become less terrible than the initial ones, but never without the overlay of having suddenly and inexplicably lost Daniel, and my father just before.

                         We are not depressed, however we are ever mindful of the shortness of human days.  Each Christmas we enter the season with fewer friends and relatives than we had before.  This is normal and yet it does not seem so, so many times.

Sometimes the answer to surviving this season emotionally intact is a scaled down Christmas with only what was really important to you, and yours.


                         For many people the Christmas season is an abyss for you too.   Please know that our family is thinking of you and praying for you too.  Please know that although the season can be hard on many of us who know a loss or layered losses at this time, that eventually, we are all reunited and that eventually all will be well.  Until then, enjoy each moment of your life as best you can, and as it benefits those you love. Celebrate in the manner in which was most important to you and to your loved one who isn't with you this holiday season.  Remember that even without them, that Love never ends and that it endures all things, even our separation across the veil.   There is more on the endurance of love in a quite famous and wonderful book, but of course, you know this.



Thursday, November 27, 2014

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.







Friday, November 14, 2014

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"


Friday, October 24, 2014

Who Was Gerald Franz ?

Gerald and Jane Franz       Photo courtesy of John Wesley Smith


                             
I have been away from the computer for several weeks as I have stayed with my daughter helping her with her new baby, her juvenile diabetes, shopping, and care of her animals.  I am home long enough to take care of my horses and other animals and then I flit back again until she is better able to manage.  There is progress, but she needs rest and routine sufficient to control her blood sugars during a time of hormonal turmoil. I will also be starting my new job teaching college again soon.

       Yesterday afternoon,(on October 23rd) while I scrubbed out horse water buckets, mucked stalls, and measured out their grain, Gerald passed from this Earth to the next life.   I had the incredible good fortune to have phoned him two days before, and we had a very lengthy conversation, which I will always cherish.

         Some years ago, I became acquainted with Gerald when he appeared on a friend's blogroll.   He penned a blog called "The Last Robin" which were both musings of his life, and observations.   He was clearly an incredibly gifted writer, and quite a Biblical scholar, and teacher.   His eloquent writings however, were not the reason we became friends.  He periodically commented here on this blog, and was a good friend to me, and I know to others as well.   Who was Gerald Franz ?     To most observers he might have appeared as a widowed older man who spent the last couple of years in a nursing home while writing a poignant blog.   However, I don't think that's who he was.   I think Gerald was a true creature of light.   Most of us come to Earth in infancy as a creature of light who is all at once encased in a small human flesh suit.   Our knowledge of light and all that we know becomes deflected by the complexities of maintaining that suit.  We must eat, then we must endure other functions, and then we must sleep. As we move through life and we grow, we learn to manage sleeping and eating, but by then, the trappings of the world have seduced us.  In youth, our friends, our schools, our families all take us farther from being the creatures of light we were meant to be.  Our worlds give way to anxieties and for thoughts of perhaps not being good enough to stand beside the other "flesh suits".  Then as we venture into adulthood, where there may be losses and events we perceive as failures, we may fall farther and farther from the people we were meant to be on our journey, which is egregiously short.     Gerald did not let a stroke, the loss of his beloved wife, or his leukemia interfere with his being a creature of light.   He had an uncanny memory for the things you had told him.  Even though he recalled scripture better than almost anyone I've known, this did not motivate him to be judgmental.   He was wholly supportive.  He was also bright enough to follow what you were saying and anticipate the extension of what you were saying, along with its implications.

         He chose not to fight his leukemia, but to go home when the time came.  This always leaves nurses in a difficult position.  On the one hand, we must honor the wishes of human beings and be supportive, and on the other, we must wonder whether we have done a good enough job of explaining how far cancer treatments and treatments for leukemia have come, in order that each patient can make the most informed decision for themselves.   I remember Gerald telling me about one of his physicians who some time ago visited him and spent a great deal of time explaining the treatment options for Gerald's cancer.  Gerald listened and no doubt left an indelible print on the doctor.  When Gerald eloquently explained why he was choosing to take the natural course with regard to the illness, the doctor hugged him, no doubt impacted by Gerald's eloquence, bravery, and most of all, his golden faith.

         Gerald believed different things about Heaven than I do, and yet he never corrected my perceptions.  He knew that I am a child on a journey, and also that I might need to believe what I do, in order to make sense of what happened when I lost my youngest son at 12. Perhaps he thought there is still some time for me to grow and learn more.

          Gerald passed at 5:25pm Central Time yesterday, and did not wish a funeral. Today he was buried  with the least amount of fuss, as was consistent with his wishes.

         Should you wish to memorialize this wonderful man, you may consider a gift to his last stop while on Earth, which was:

        Hospice Compassus, 3050 I-70 Drive SE, Columbia, MO 65201.

He conveyed what a wonderful job they did for him, especially with regard to controlling his pain with sufficient skill to allow him to still be clear enough to continue to communicate via phone with his many friends.  I will always be most grateful for the conversation we had, just two days ago.
 
         My favorite recollection of Gerald's was the story of the "Library Cat".  It so epitomized his personality and generous spirit, and it also reminded me of something my own father might have done.


          I will remember this remarkable man and creature of light for many things, for the funny anecdotes, for the sad ones, and for a golden faith.  Gerald believed that those who accepted God would meet again but only upon the resurrection.    Once again, I need to be comforted by knowing that today, he will see God and his beloved bride Janie.  In the time which follows I imagine, or perhaps I hope that my beloved father and my son can meet Gerald and share stellar conversations.  It comforts me to think this.

If you wish to read some of the writings of a creature of light, then these are links to specific posts:


http://thelastrobin.blogspot.com/2012/12/the-library-cat.html

http://thelastrobin.blogspot.com/2012/12/who-do-you-work-for.html

http://thelastrobin.blogspot.com/2014/10/degrees-instead-of-knowledge.html

http://thelastrobin.blogspot.com/2014/10/will-you-please-shine-light-over-here-i.html

http://thelastrobin.blogspot.com/2009/12/no-more-death.html



The entire anthology of this great man can be found at:

http://thelastrobin.blogspot.com


Thank you,  Gerald,  for everything





The number 23 was significant to Gerald because scripturally he believed in symbolized change. I thought this song, written and performed by Sarah Slean was a lovely tribute:


John the 23 rd                                                                        Sarah Slean

Thursday, October 9, 2014

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.

Thursday, October 2, 2014

Daniel Becomes an Uncle

           
Nikolas     (Copyright J. Krehbiel)   In this particular picture, Nikolas resembles Daniel a bit at this age.




         I thought a lot about Daniel in the past couple of weeks.  Within the last couple of weeks, Daniel's only sister, who is a Type I (juvenile) diabetic gave birth to her first child.  It was a challenging pregnancy, labor and birth, and many times I found myself mulling over the unfairness of my having lost Daniel without warning, and then still contending with the known issues of Type I diabetes in my daughter, and Crohn's Disease in one of my other sons.  Both of them are now adults who have completed university.   Daniel's brother Matthew, who was a preemie is now grown,  well and at college.  Of course, life is never purported to be fair.  However, I don't think my daughter at any time was feeling unlucky.  At no time during her pregnancy did she express discontentment at the part Type I diabetes would play in it.  She maintained her blood sugars within the normal range using an insulin pump, as she has done since age 12.  (She got IDDM at age 9 and started the insulin pump at age 12)   Somehow, she was allowed to labor for almost three days and to deliver vaginally as she had wanted.  She and the baby were in the hospital for a bit more than a week afterward and I did private duty nursing for them for the entire time.   (Yes, Nana looks tired.)     I am so incredibly proud of her.  She kept uncommon grace,  focus and strength throughout the entire process.

             I heard echoes of Daniel throughout the experience.  It was a very different experience from my own rapid labor and delivery with Daniel, who was my last child, and yet I was still playing his birth in my mind.   This also occurred at the same major university medical center where Daniel's autopsy was initially performed and so Daniel slipped in an out of my thoughts while we were there.   When I stood in the early hours of the morning with his parents,  as my grandson was born, I imagined that both my father and Daniel were on both sides of me standing there, and there was just enough room in that space for that to have occurred !

             My grandson Nikolas shares Daniel's middle name, which was Nicholas, and although Nikolas is a shiny new soul, I could not help but notice a family resemblance.  The picture I have included of Nikolas could easily have passed as a picture of Daniel taken at birth, with about the same expression.

             Daniel and Dad, I know that if the veil between us is thin, and if you could have been there, you were. Congratulations Daniel, on being an uncle, and Dad, congrats on being a great grandfather. If Heaven lies over top of the Earth, then we really aren't that far from one another, in the bad times, or in the really good ones either.   I thank the rest of you for the thoughts and prayers through this challenging time for my daughter, Daniel's beloved sister.




Monday, September 22, 2014

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)(

              
                      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,

Sunday, August 31, 2014

The Passing of a Fine Physician




                          We first met Dr. Francis Stanford Massie, Sr. when our children were small.  We have a  number of people in our family  with a wide variety of allergies, and the move to Virginia with small children seemed for a time, to make those allergies worse.  We didn't know it at the time, but our choice to see Dr. Massie had been a fine one.

                           Dr. Massie grew up in the rural community of Waynesville, North Carolina.  He had an appreciation for rural life, and for fishing and hiking.  He attended Duke University for his undergraduate degree and for medical school. Afterward, he completed a residency at the University of California at San Francisco in pediatrics and then an additional residency in allergy.  Then, he served two years at the naval hospital in Camp Pendleton. From 1983 on, he became a Clinical Professor first in both Pediatrics and then later in Allergy and Immunology at Virginia Commonwealth University School of Medicine.  He also maintained a solo practice as an allergist/immunologist for many years. He enjoyed playing classical piano and also for a time, played in a jazz band.

                           I remember him as a very scientific and exacting physician. He questioned us very carefully as to what seemed to cause our symptoms. He kept meticulous records. He would get up very early in the morning, in order to complete the most challenging tasks of his day between about 7am-8am.  He also had an excellent memory, and he remembered things we had told him about our large family. He also was extremely punctual and didn't like it if patients were not on time, because he was, and although he kept to a strict schedule, every patient could count on getting the time and attention they needed.

                           I did not know this until later, but Dr. Massie had created the first board approved residency program in  Pediatric Allergy in Virginia at the Medical College of Virginia . Finally, Virginia would have pediatric allergists trained specifically by Dr. Massie.

                           It didn't take long for Dr, Massie to control our children's asthma, beesting allergies,  and to identify Daniel's food allergies. Our  biennial visits for each one of us, were important for our health, but he took pleasure in seeing our children grow and in their becoming more articulate.  I don't think he was thrilled with our choice to homeschool them, at first, but he could not have been more pleased when our children, when they were still young teens attended community college and then went on to do well at their universities.  He was especially interested in the projects of our children who received degrees in sculpture and in illustration.  He had a great appreciation for art and for artistry. Several of our eldest sons works were displayed in his office.

                           In his later years, Dr. Massie closed his solo practice and joined an established allergy practice, but he continued to see his own patients, to encourage families and to educate physicians and other medical professionals. He was also a great encouragement to me professionally.

                          Dr. Massie was the last physician to examine Daniel just weeks before Daniel passed.  So many times it has been a comfort to me that one of the finest physicians I have ever known did a detailed physical (not usually done for a simple allergy follow up visit) and it had been fine. It helped me to see that perhaps I had not "missed something" that we could have detected and taken steps to intervene to keep Daniel here.    Dr, Massie was the physician who ultimately signed Daniel's death certificate. He was also the physician who read us the final copies of Daniel's autopsies and answered the questions we had about them.  We had both not seen anything wrong, and yet Daniel had died of a sudden arrhythmia.   Dr. Massie, and several of his staff members who were known to us, attended Daniel's funeral, and that day, Dr. Massie was not our allergist, he was part of our family, and his love and his sorrow shone through. We did not grieve our great loss alone.

                       I know he was exceptionally proud of both of his sons.   F. Stanford Massie Jr. MD is a professor of Internal Medicine in a major medical school in the South.  Tristan Massie Ph D, is a medical biostatistician at the US Food and Drug Administration.  He loved them deeply and the same was true of their families, his grandchildren. For many years a picture of both sons hung in his office in remembrance of a family trip to Machu Picchu. He also adored his little dogs, and was quite devoted to them.

                       I know that Dr. Massie spent a life abundantly well lived here. He touched the lives of many patients and families and trained many physicians and encouraged many other professionals. We all should be lucky enough to have a physician, at least once who is bright enough and diligent enough to do such a fine job.  And even then, results are never guaranteed and when the worst happens,and there is a loss of a child, he did not distance himself from us. He remained there answering our questions as best he could knowing that we too had done our best in CPR that day.

                     I never really got a chance to tell you, although I did hug you the last time we saw each other.
Thank you for everything.  You used to tell me that I was such a good mother to these children, when in point of fact, sometimes it was your encouragement that provided the courage for me to continue to do the things I needed to do.  You will be greatly missed by so many people, and by so many families.

 I know that Daniel was be waiting in line to welcome you.












Thursday, July 31, 2014

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 !




Tuesday, July 15, 2014

The Sudden Loss of Yet Another Child

This is Kate Livesey.  She even resembles Daniel.


Daniel, our son who died in 2008 of presumed Sudden Arrhythmic Death Syndrome which was thought to likely be caused by something called Long QT Syndrome.   He had a negative autopsy, and a normal physical just weeks before.






               Kate Livesey was an energetic, healthy lovely nine year old girl who dreamed of being a pop star.   When she wasn't enjoying playing sports, she was singing and dancing.   It's hard for me to look into her beautiful little face and not be reminded of Daniel    They even look facially similar to me.    In February of 2014, Kate who was perfectly well, was found slumped in the bathtub in an apparent cardiac arrest.  She was immediately taken to the Royal Manchester Children's Hospital where she was ultimately pronounced dead on February 7th.

              There is so much about this case that breaks my heart.   Like Daniel, Kate was active and well and believed to be healthy.   Kate's mother was known to have an arrhythmia which had been treated, but no one thought it important to evaluate her children for potential Sudden Arrhythmic Death Syndrome.  There were older family members in our family who had been treated for arrhythmia, and although I had asked if their issues had implications for our children, it had been thought not. Both children had a presumed diagnosis of Sudden Arrhythmic Death Syndrome because post autopsy review of organ systems made their cause of death "unascertainable".   Neither child had any signs of structural heart disease.  Both Kate and Daniel had their first and last episode of arrhythmic death syndrome in bathrooms.  Both of them left an older brother named Matthew on Earth.

               My thoughts and prayers go out to the Livesey Family who are only just beginning this journey.
We need to do a better job at identifying children at risk for SADS and screening them in advance.  More research needs to be done in how we can better identify families with children at risk.   Saving even one family from such a cataclysmic loss of a healthy child, is a worthy goal.


To donate in the memory of Kate to her family:

https://www.justgiving.com/Suzanne-Livesey/

 
                                

References for this post:

 http://www.mancunianmatters.co.uk/content/140769762-singing-girl-9-who-dreamed-being-next-cheryl-cole-died-without-warning-muamba


 http://www.dailymail.co.uk/news/article-2691241/Fit-active-nine-year-old-girl-dies-suddenly-struck-heart-condition-Fabrice-Muamba-bath.html