WHAT I LEARNED FROM DANIEL : THE BLOG ~~ Our loving, brilliant, and remarkable,twelve and a half year old son died suddenly, and without clear cause, the day after Thanksgiving, 2008. This blog is a window into how my husband, our children, and I learn what happened to him, and how we survive his passing from Earth. It is also a chronicle of the blessings that envelope us now. How we survive is documented both here in snapshot, and in our book, "What I Learned from Daniel".
I try not to recycle posts, but in all honesty, this post which appeared here December 17, 2011 probably says what I feel about this time of year, better than I could now. Merry Christmas Everyone.
Picture from selfexcited.blogspot.com
We come to Earth as babies, and many of us find a loving mother, often a loving father, grandparents and sometimes even siblings. Uncles and aunts and cousins round out our families, and many of us are lucky enough to be woven into a basket of loving family as we are babies, toddlers and children. We have more connections to the world than we can count, and this is how it is meant to be. Of course, this can change. Fathers can leave or die, mothers can return to work, or pass also. Uncles can move and take cousins with them. Disasters can take entire families as well. Most often we enjoy our extended families and don't begin to lose large numbers of our family constellation until we are in our fifties or our sixties, when God prepares us one family member at a time, to begin the process of realizing that we will return to Him, from where we came.
Please try to remember this holiday season that many people have not had the genuine treasures that we associate with Christmas and the holiday season. I am not talking about presents or material things we have. I am speaking of the real treasures of this life, the love, camaraderie, shared acceptance and joy that can come from spending time together as a family. Not only do many people not have this as children, but it can be hard to create in one's own family when one cannot recall these moments well in adulthood.
Some of us lose entire families when circumstances take us from them, and some of us lose family when they pass to God, one by one. In any event, people are often left here on Earth without the connections to others they had when they were younger. At Christmas, when the hype of happiness, joy, and a glorious special day is all around us, it can be a very difficult day for many people. Please remember this, and take part of your holiday season and share it with someone who might not have the connections to family or to friends that you do. Jesus Christ did not send a blessing to all of us on a proxy date of his birth. He sent us blessings year round. The longer we dwell on Earth the harder it can be for us to see sometimes. And this, is one of the most important things I have learned from Daniel and also from my Dad. Merry Christmas all.
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.
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.
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"
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:
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:
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.
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.
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.
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 waiting in line to welcome you.
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 !
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.
I use strawberries on my cake, and usually I don't configure it like a flag, choosing instead to mix the strawberries and scattered blueberries on top of whipped cream, but I think you get the idea. ( Photo: www.rockingwallpaper.com )
Independence Day which, in the US, is celebrated on the 4th of July, was a favorite holiday when Daniel was still on Earth. We used to cook hotdogs, hamburgers, and chicken breast on the grill and have salad, cole slaw and potato salad with an early afternoon celebration meal. Sometimes, I would make a sponge cake with cream covered with randomly set fresh strawberries and blueberries. This would be a true red, white and blue cake. One year, I placed vanilla ice cream on it and then decorated it with the red and blue fruit and served it at once. That evening, we would let off fireworks on the farm, in a place where we had hosed down the grass to avoid fires from sparks during what is often a dry season here. We also avoided using fireworks in areas where animals might be frightened by fireworks. In the five and a half years since Daniel departed Earth, as much as I sometimes wanted to hold Earth still, as if he could somehow jump back to Earth, time has moved on. His sister graduated from university and has established a career, and bought a home. His eldest brother graduated from the university, has had heart surgery and also been struck by lightning since, and continues to gradually recover. Another brother just graduated from college, and in a really lousy job market has decided to go on to get an additional degree. The son we adopted a year after Daniel's departure continues to be at home and to make slow and steady progress in adapting to life in a family.
This year, we gathered for our normal Independence Day meal. My husband grilled, and the boys made food. Our daughter brought some food she made at her home. This year, I didn't make the sponge cake dessert. Since a number of our animals are beyond normal life expectancy they require pretty attentive care particularly on hot and humid days,. my time before dinner, was taken by caring for them. Many of them were here when Daniel still was. In deference to the animals we decided not to have our annual fireworks here on the farm. Yesterday the thunder and lightning frightened them, and so we decided to give them a rest. Instead, my husband and two of the boys went to our county's fireworks display which was really quite something. My husband recorded it on his iphone for the rest of us to see afterward.
So much in our family, our rural county, our country, and the world has changed since Daniel's departure. Children do indeed grow up, and this is what they are here to do. However, so many of the other changes have not been good ones. Happy Independence Day, Daniel. You are missed and remembered, every moment, every holiday, and through each day as your siblings grow and change. Thank you for coming here, and for being an important part of the frenzied holiday activity while you were. We love you, and we always will.
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 !
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.
It's strange how the days leading up to the loss of Daniel, and the weeks and even months afterward have been captured in my mind in great detail with a great deal of accuracy. I wonder sometimes if this is true of others who experience a life changing incident. I have concluded that it may be true for some, but not all.
When Daniel died so suddenly in late November of 2008, the days which followed turned very cold. I remember shivering at the "Celebration of His Life" and turning the heat on in the house for the first time that season. So much of that time was surreal and like a nightmare. I think I coped by ensuring that I was as busy as possible. If you keep on running, perhaps the grief won't know where to find you, and might not hit you with full force. Since we live forty to fifty miles from anything, we spend a fair amount of time driving anyway. I remember driving and thinking a great deal in the weeks which followed the funeral. Daniel's funeral had been in the beginning of December, and several weeks later, we were nearing a sterile Christmas. Since Daniel had bought presents ahead of time for everyone, I was determined to make this a celebrated Christmas for our other children. I knew it wouldn't be a fantastic one, but I was settling for a salvaged one. For this reason, I was on the road in the car even more than usual, buying presents that had special meaning and this too increased my travels. About a week before Christmas, it once again warmed up outside, which happens here quite often in Virginia. I was returning on a country road from one of the cities which is about fifty miles from us. I slowed, as the traffic up ahead did. The church in that area runs a Christmas festival each year and during the festival, always makes the two lane road rather busy, as it was that evening. As I slowed and watched ahead, I saw a man with long hair riding a bicycle. He was riding much the way a child does, and in a split second, he was hit by a car and knocked into a mailbox. Without thinking much, I pulled into the nearest driveway and went over to him. After all, after doing CPR on my son, and having the medical helicopter come and have been unable to save him, what more could I see that would disturb me ? Another driver who stopped said he had called 911. I sat with the man who was lying in the gravel at the roadside. He was crying a bit like a child, but also in much the way many of us would be given the circumstances. His first concern was that I move the bicycle from the road. The man whose driveway I occupied, moved it and promised to hold onto it for him until he returned to get it, as the man who was hit would be leaving the property in an ambulance. The man who was hit was about thirty. He asked me if I thought his pelvis was broken. I told him that he should sit very still and not move around until he had been assessed at the hospital. I told him that scans would need to be done to rule out any injuries. There were no obvious fractures or obvious injuries. Then, I took his pulse. It was completely regular and only about 78 beats per minute. For a moment, I was just a sliver angry with him. How could he be hit by a car and have a completely regular pulse of only 78 ? My own pulse was likely 90 at the time. Daniel wasn't hit by a car, and he was dead ! Where is the sense in that ? The man started to get upset at the fact that the woman had hit him, although the people who had gathered who included a couple of witnesses thought that he had been the one who at dusk didn't have bicycle lights and was riding on a busy two lane road erratically. I spoke calmly and clearly to him telling him that he was okay, and that he had a slow and regular pulse. He would need to be assessed at the hospital but he was able to feel and move his toes and feet, and at one point moved slightly as he was lying in gravel, and this alone was uncomfortable. Then an ambulance arrived and searched for a place to park. A deputy sheriff arrived at about the same time. When the ambulance took over, neither they or the deputy asked for my name, even though I was a witness. I remember getting back in my car and waiting a long time before the road was clear enough for me to leave. I never heard anything directly about the accident again. I believe the man who was hit to likely have only minor injuries as his pulse remained about the same in the fifteen or twenty minutes I monitored him.
I have often thought it strange that even after such a terrible loss myself, one that changed my life forever, that stopping at the scene of an accident to help was still simply automatic. I didn't even consider driving on ahead, even though there were plenty of people there, and the sheriff's office had been directing traffic at the festival, and most of them in that county are also EMT trained.
It isn't fair that Daniel developed an apparent arrhythmia which took his life with no obvious precipitating factors. It isn't fair that a man in his thirties riding erratically on a bicycle gets hit, and then doesn't even have the expected rise in pulse from the adrenalin we might expect, let alone any clear injuries. I used to tell my kids that life isn't fair, and often we can't really look for it to be. Somehow this was of little consolation at that time.
The following week, I asked a friend of mine who is an EMT what she knew of the man who was hit by the car. She told me that he was treated and released from the Emergency Room. Life certainly does go on, no matter what the losses we might personally endure might be.
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.
This week was filled with the busy whir of multiple graduations. One of Daniel's brothers (our son Matt) graduated from college, as did one of Daniel's friends. It still hurts unexpectedly when a friend or contemporary of Daniel's reaches a milestone here on Earth that Daniel will never reach here. During the reception afterward, we saw many people who had met or knew Daniel. I wonder if I will ever attend a graduation reception without thinking how much Daniel would have enjoyed it. Most of the time I can summon the mettle to tell myself that God has a plan and that Daniel achieves great things in our next life, and also that Daniel was always God's to call. Sometimes the sorrow catches us unexpectedly, especially during life's milestones, particularly those of his siblings. Certainly, if I, a mere human woman, understands how fine a person Daniel was from his time here, then God would know also.
So I persist in this strange world, doing my best and raising our remaining family and our animals as best I can. Daniel's brother who graduated this week will be going to yet another university for an additional degree. With the economy persisting in tatters and jobs as scarce as hen's teeth, this is probably a very good idea.
And so now, a Summer break begins. Appreciate the family you have left with you. Keep them safe this Summer, and enjoy the days we all have remaining. I will try to do the same.
