Thursday, May 16, 2013
Please remember that as I start a new Spring without Daniel here, that there are still families who do not know the whereabouts of their beloved young adult child.
Jonny Dorey, Ian Burnett, and Lauren Spierer remain simply missing without a trace.
Please pray for their families and call the contact numbers in the links below should you know anything about
any of these cases, or have seen one of these people.
In general: (Blog discusses more than one of these young adults being missing)
Wednesday, May 8, 2013
I must admit that I did not contemplate Mother's Day a great deal before losing a child. I didn't need flowers, a dinner, or anything terribly special. I used to enjoy receiving a drawing and a handmade card from my kids, and I still treasure these. I am pretty happy being treated well year round, and so I didn't really feel the need for a fuss on a particular day. After all, I have my birthday.
However, after the loss of a child, Mother's Day becomes much more significant, much for painful, and a day to endure. I can't even watch television without hearing about Shari's Berries, and how Mother's Day would be incomplete without them. Mother's Day is incomplete. It is incomplete because I am the Mother Duck in the song Daniel used to sing and shed a tear to, where one of the little ducks doesn't come back. Of course, in the last verse, all the little ducks come back. Sometimes our lifetimes seem very long before our little duck comes back. Sometimes the days, and the days leading up to them, can be very hard. Today is one of those days.
The little card above was found on the SUDC website. It's a reminder that Mother's Day might be a happy day for many families, but for many of us, who have lost a child in this lifetime, it is a bittersweet day.
I send love, best wishes, and whatever wishes of happy memories I can to my sisters in grief this week.
Take good care of yourselves and of the children you have remaining on this Earth.
A great song for Mother's Day: This Amazing Love
And Daniel, I am not sorrowful this Mother's Day. I carry the joy of the memories of having raised as fantastic a young son as you ! I am so grateful for your having made the trip to Earth to be an important part of this family.
Monday, May 6, 2013
|Cake by: Sweet Treats by Susan: Happy Birthday Cake|
|This was another cake for another Daniel. I think this would be my pick for my birthday !|
Rather than celebrating your birthday in your absence, on the actual day of your birth, I have taken to celebrating your birthday on your birth week. I am aware that it makes others who have not lost a son or a daughter in this life, a little uncomfortable. This is not about them. It is not up to us, or to anyone who is grieving to arrange our lives in a manner which is more palatable to the masses. The loss of a child is a lifelong grief, and a deeply personal we must adapt as we must. We have to find the procedures and rituals which comfort ourselves and our families. We don't really need to please anyone else.
I realize and accept that Daniel's sudden departure is one of the things which makes me who I am, with both good and bad. I also realize that in some way, constructive or otherwise, I will be grieving his passing from Earth before mine, for the rest of my life here. Of course it will seem to center on his birthdays which are in the Spring, and the date of his passing, which is in Autumn, and the entire thing will be exposed raw at Christmas, but this is how it is.
Daniel, I cope by knowing that God had a plan and sent you to Earth to achieve certain things and to understand certain joys while you were here. All parents hope that their child will enjoy the "entire package" of life, and I was not exception. I did not understand that you were to be called home, with no notice, that beautiful backlit morning. I still can't completely believe that this is what happened.
I look at the week in which your seventeenth birthday is occuring. How could this be ? You left Earth at 12 1/2, and on Earth you would have been seventeen. I try hard to imagine what you would look like now. I know that you would have grown and matured, but I also know that your loving heart and commentaries would not have changed. I knew who you were, not only at 12, but I knew your soul and it is ageless.
It never ceases to amaze me how many "Happy Birthday Daniel" cake photographs can be found on the internet, especially at this time of year. Please know that your family on Earth loves you, and never forgets any of our experiences here with you, and we wish you joy and happiness there, this day and always.
A Happy Energetic Song "Amen" By Sarah Slean
Happy Birthday Daniel
Thursday, May 2, 2013
I pay very close attention to the googled phrases which bring readers to this particular blog. Some people want information for school reports on the causes of sudden cardiac death in children and in teens. Others are looking for specific information on some of the people we have profiled periodically who have passed from either Sudden Unexplained Death in Childhood, or from a sudden cardiac death of discernible cause on autopsy. The most fragile of the people who come to this blog are those who have lost a child, often recently. They are lost in the world in those moments and are looking for just a hint of how they can possibly go on. I take helping them, if even in a very small way, as a very important task and as a sacred obligation. This is one of the reasons that I run this blog differently than my other blogs. I am not about snaring lots of members to this blog. It is about sharing thoughts, and comforts to those who desperately need this when they log in here. I know that it is a help to many parents, and that this help is very much a living legacy to Daniel.
Now I will get to answering your very good question. How do you move ahead following the loss of a child ? First off, as you already know that at the moment of your child's departure from Earth that your life, your spouses life, and that child's sibling's lives changed forever, in a total and in an inexplicable way. Things will never return to exactly as they were before the pivotal passing of a child. The child is not just missing from the present, but the entire linear progression to his future, and to yours is gone. It can be hard to feel anything but bewilderment. Secondly, the circumstances surrounding the death of a child will impact the character of the grief you feel, and the length of time it will take to navigate the tallest and rockiest cliffs of that early grief. At first, all parents have guilt mixed with their grief. Sometimes, they believe there is a reason for such guilt, but often there is not. There is just the overlay in your feelings that this child who was given to you, was yours to protect, and if she has died, then somehow you dropped the ball. Of course, we can't stand as the body guard to our children (without turning them into some very strange and paranoid people !) We must let them live their lives and make their way in the world as is age appropriate. The world, and even within their own bodies may not always be a safe place. We do our best to protect and to love our children and we all wish for our children to live long lives here, long after we ourselves leave the Earth, but sadly, some of our, no many of our children, here on Earth move ahead to the next life, ahead of us.
For many of us, the guilt comes first. Anger is often easier for us to wallow in, than grief and sorrow, and some of us become absorbed with anger or rage, sometimes directed to someone who is, in some way responsible for part or all of what happened to our child. More often than not, we may blame someone who is in some way related or associated with the passing of our child, but not responsible. Many parents whose children die blame their child's doctor. I was fortunate in that I have very clear recollections of Daniel's last physical, and it was quite detailed. However, neither his physician or I, saw or heard anything worthy of additional exploration. Sometimes, anger is inappropriate, and we have anger for the death of our child, and no one tangible in order to deliver that anger to. When anger passes, many of us descend into an abyss of sorrow which I would not wish on anyone on Earth. ( I would like to say on "my worst enemy" but I don't have one of those.) The abyss is mind and mood altering and leaves us wondering why we did not evaporate along with our child. I would imagine that this is the place that most of you dwell when you are up at night, google one of the subjects I have written about here in the last nearly four years, and then log on. There is no magical prescribed series of activities which lifts this storm.
Grief is an arduous journey, and it's a lot of work. There is no specific prescribed path, and the journey and the activities are different for each of us. In my personal journey, I first needed to make sure that the sudden arrhythmic disorder which had taken Daniel from Earth without a hint, didn't also afflict one of my other three biological children. Following a funeral where we didn't know what the cause of death had been, we moved on to an autopsy, which has continued in multiple cities. Parts of Daniel's body in death have traveled far more than he did in life, an irony which simply leaves me sad. After the electrophysiologic evaluations of my three other terrified children, came the decision that at least one of them would have a cardiac ablation. His other medical issues made that eventuality especially frightening. I was called on to be courageous in the time of life in which I had almost none.
For a long time, I held it together very well for my husband, for my children and for my friends. My friends were devastated enough. How could I make it worse for them, and for Daniel's friends by showing how lost and sorrowful I really was ? I didn't. I developed two basic ways to cope, one of them functional, and one, not so much. In one, I booked myself to be incredibly busy all the time, and always doing something. I don't think I sat calmly enough to as much as drink a cup of tea for three years. I was a flurry of activity. I was a wheel that had to continue to spin. The second way in which I maladapted somewhat was that I realize that I felt that eating properly, or at least attempting to do so, hadn't kept Daniel alive, and so what was the value in it ? I found myself eating not only whatever I wanted, but for some foods, in the portion not only for me, but in the portion for Daniel as well. I realize now that I did not adjust the amount of groceries we bought when he passed. I just ate his portion. In a sense, he was still here. Fortunately, for a long time the hyperactivity of my grief compensated for the poor choices. Eventually though, I gained weight sufficiently to have to diet.
Other things I did to sustain the activity level that my grief brought to me was
1. Collecting all the pictures ever taken of Daniel, and categorizing them, for a large series of scrapbooks.
2. Going through everything that was in his room. Rather than giving away or donating the items, we designed and built the teenager finished basement bedroom on the same level as his brothers, as he always had wanted. His siblings painted realistic clouds on the ceiling which seem to drift as genuine clouds do.
3. I collected all the DVDs and movies he had ever watched, and especially those he loved. This was easier than it sounds as many of them were very reasonable on half.com. Our family spends time in Daniel's room watching his videos and remembering the times we spent together.
4. I started this blog. It was a place in which it is socially acceptable to talk about Daniel and my feelings, whereas in much of the rest of the world, he passed almost four years ago, and people are uncomfortable when I speak of him.
5. I wrote a book about our experience called What I Learned from Daniel.
6. I started an additional blog in order to bring disaster preparedness to people around the world.
7. I wrote an additional book on disaster preparedness, called Rational Preparedness.
8. My normally frugal self bought a small house by a beach out of the country as I was determined to provide a place for my children to go out of the country, as I felt I had failed in taking Daniel to see all the great sights on this Earth while he was here.
9. I had barns and kennels built for Daniel's animals, as a way of honoring all the animals he had loved so much while he was here.
10. I bought two horses, one a Shetland pony very similar to the one Daniel rode on at the Celtic Festivals we used to attend annually, and another who I realize now, looks a lot like the boy on a horse (Daniel) on the weathervane on top of the cupola on one of those barns. Daniel would have loved the horses.
11. I left my job as a college instructor, and I don't know if I will ever be back.
12. We adopted a young teen boy to honor the memory of Daniel and provide a home to a boy who would not have had one. (Daniel had always wanted us to do this.)
And the list continues and is not in order
For each of you, you must find what gives your life and the life of your child meaning. For some of you it may be activities for fundraising for the illness which took your child from you. For others it may be grief work, helping others to deal with whatever personal blueprint for grief exists for them. For others it may be working within the community to try to defuse the type of violence which ended your child's life. Finding our way through our grief is a mammoth personalized journey which each of us must make. There will be days when the tears must fall, and there will be no avoiding them. There will be days when the sweetest of your recollections of your child crystallize into perfect memories ! I remember so much about Daniel now, almost four years after his passing. For almost a year after his passing, I was so grief stricken that I could not access all of our memories together.
As smarter people than I have said. Grief is a journey. We cannot avoid it, got around it, above it, or below it. We must go through it. I chose to be as busy as a one-armed paper hanger to go through the most painful and most acute phases of mine. There is no magical path, no shortcut. I can promise you though that as you move through the storm that is grief, that you become better at navigating this storm in time. For most of us, we began to better function and to begin to derive joy in our lives once again, around the year mark. Until then, it's best not to make any major life decisions, or even to change residences if you can avoid this.
Personal faith in God and in the hereafter helps a great deal in navigating grief. However, we must accept and admit that regardless of how strong our faith in God is, and our faith that we will be reunited with our child at the end of this life, we are still left with a life in which we will not see our child's facial expressions to our words. We will not see his college graduation, his wedding, his children on this Earth. Cultivate your faith however you can. Many of us live with this every day. Know that I pray for you, and your family also.
The Glory- Royal Wood by maplemusicrecordings
(Yes, singing background vocals in this video, is Sarah Slean, who is married to Royal Wood.)
Saturday, April 27, 2013
One of the ways I have found to remain interested and engaged in life following your departure, Daniel, is to live life, in a sense, as if you were here. I think that in a way, living a life that you would have enjoyed or would have enjoyed seeing me enjoy, pleases you. I believe that somehow you see what I am doing. Consistent with that way of thinking was my choice to get the two horses, which I will tell a bit more to the blog readers about, in the future. You always enjoyed the alpacas immensely. The horses are different creatures but also interesting. They need us to be dominant and in charge, so they don't have to be, but they also have a very clear idea of dominance and who should go first out to the meadow grass as it sits there waiting to be eaten. I can clearly imagine your taking a lead and walking these creatures out to the meadow, adjusting their halters, and grooming them. Sometimes, I feel as if you are walking with me, not letting your lack of physical presence prevent you from enjoying this special time with these horses. I feel my Dad with me also. An accomplished horseman, I remember all he taught me. Well, almost all. I still managed to let the larger one step of my foot when I was putting opthalmic neosporin on his eyelid. Dad would have been smarter. I feel him watching me as I use a hoof pick and I remember all he said about how easy it is to be kicked by a horse.
In a short time, it will once again, be your birthday. You would be 17 years old, early in May. It would be time to teach you to drive, and you would likely be dating some of the girls who always adored you from the homeschooling group. Your friends are turning into young men. My friend Carol's two sons whom you knew have several trucks over at their farm. I am pretty sure the boys are restoring them.
Oh, I still have the yearning sometimes, the feeling that you should still be here, and that you should not have been called. I do know that God had a special plan for you, and for the likes of Ben Breedlove, Taylor Dorman, JT Baptista, and Michael White. He did not waste your lives. Our Lord had something else, something pivotal that he needed you all to do. I know this, and I know that you are in exceptional company. I just wish sometimes that you could have stayed with me.
Happy Birthday, you beautiful young man, who was a creature of light long before you actually physically became a creature of light.
Wednesday, April 17, 2013
On April the eleventh, Taylor Dorman was in school, and it was his sixteenth birthday. He attended a gymn class in which the class was practicing line drives. A few moments later, Taylor was accidentally hit in the chest with a softball. He seemed fine afterward even joking about it. Twenty minutes later, this was not the case. Friends asked him if he were alright, and there was no response. A medical transport helicopter was dispatched to the Southern California Ramona High School.
CPR was continued, and Taylor is said to have survived long enough to have been admitted to an Intensive Care Unit. However he died not long after.
Taylor is said to have been a loyal friend. He is remembered as a jovial and fun classmate. He had a lot of friends who will miss him badly. The medical examiner's office indicates that Taylor experienced a heart rhythm disturbance prior to his death. Friends say they believe that Taylor was known to have a history of a heart murmur.
|His school says he will always be remembered as a very happy person.|
Children, teens and adults who collapse immediately or later and die of a heart rhythm disturbance are said to have had something called commotio cordis. In each heartbeat, we have a vulnerable period called our "t" wave in which anything from a tap on the chest, a fall, or even vomiting can send the heart into a non productive rhythm. This non-productive rhythm can eventually result in a cardiac arrest, and when it's caused by such a phenomenon, can be very resistant to resuscitation.
I send my deepest condolences today to the family, and friends, and particularly the mother of Taylor Dorman. I can relate to your shock, and your emptiness.
Family and friends had planned to celebrate his sixteenth birthday this weekend, and are devastated that they will be attending his funeral instead.
As the mother of a child who died who at 12 1/2, died of a cardiac arrest secondary sudden heart rhythm disturbance, without being tapped in the chest, and with no prior cardiac history whatsoever, I can tell you that much more of this happens than is realized. I'm tired of being told how rare a sudden death in a child or teen from arrhythmia is. Then why have I met so many ? It's time to have AEDs at every practice, and it's time to screen all teens with an EKG before 13. This will not catch every case, and an AED on site will not save every young man or young woman who experiences a sudden cardiac arrest, but we will do better than is being done in the US right now. If I can spare even one family, the sudden and unexpected loss of a child, then this certainly seems a worthy task.
|Taylor Dorman, in happy times.|
Our older posts on commotio cordis can be found at:
One of the boys mentioned in the post below, Matthew Hammerdorfer, also passed due to commotio cordis, although he was playing rugby.
Monday, April 8, 2013
Daniel liked BBC series with excellent character development, or where the friendships or relationships between characters were explored and strengthened over time. One of his favorites was BBC's Monarch of the Glen. PBS, here in the US is presently running the BBC series Call the Midwife. Call the Midwife is based on the memoirs of Jennifer Worth, a nurse and newly qualified midwife at the time, who arrives at her newly assigned position which she believes to be a maternity hospital in London's East End slums.in 1957. Her new assignment turns out to be as a new midwife at a "Nurses House" named "Nonnatus House" which is part of a convent. Medically trained nuns run the convent, and four NHS (National Health Service) nurse-midwives deliver babies within a large radius of the convent itself. When the young midwives are not delivering babies and carrying precipitous delivery packs on the back of the bicycles they use over cobblestone streets, they are running prenatal clinics. They also do their share of general public health nursing for the clientele who live near the convent itself. The area in an around Nonnatus House is extremely poor, and this is quite a shock for Jennifer Worth's character, as she very quickly finds herself delivering babies in many different types of tenements and sometimes for difficult clients. In fact, in real life, these nurses delivered 80-100 babies per month from the Poplar Region of London's East End, at that time.
|The cast of "Call the Midwife"|
This is a particularly interesting program to me because culturally it is so different from how we managed maternity care here in the US at the same time, and as a Registered Nurse, this is of great interest to me. In 1957, in the US, pregnant mothers came to a hospital and have their labors managed and their babies delivered in a controlled environment. In East End London at the same time, most every woman was delivered in their small flats by a midwife, while their loved ones waited, many times, just outside the bedroom door.
Interesting also is the education of midwives between the US and England. In England, a State Registered Nurse took additional training at a hospital and became certified and as a midwife, and this could be done as early as age 22. In the US, I trained in the late 1970s. A midwife here was a Certified Nurse Midwife who completed not only a Bachelor's degree in Nursing through a university, but also completed a Master's degree program in Nurse Midwifery, and became licensed as a Certified Nurse Midwife. Very few women in the US were candidates for delivery by an RN CNM. Although in 1984, when my first child was born, my obstetrician was married to one, and she saw me, in the hospital, with him, the day before I delivered my daughter. What is interesting is how different the childbearing culture was in these two places in the late nineteen-fifties onward. I understand now how difficult it must have been for my mother, a British gentlewoman, when she and my father moved to his home in California, where I was born. My mother was accustomed to a midwife coming to attend a birth, and she was shuttled to a hospital in Marin.
Interestingly, as an RN, it sounds risky to me to deliver the bulk of women in their own homes, which may or may not be clean enough for normal childbirth. The fact is, that most deliveries were in fact, managed by trained Registered Midwives in the United Kingdom, and most did just fine.
|This is the pin that certified midwives in the UK, in that era wore, in addition to their SRN pins. You can see this on their uniforms when they make home visits or run prenatal clinics. The owner of this particular one wears it on a cord.|
I was particularly touched by the episode in which a mother loses a baby, the day following his birth. It was handled sensitively, and I wanted to cry, as losing one of my own children, is so familiar to me.
Daniel likely would not have liked all the delivery scenes, although he would have appreciated the development of the friendships between the young midwives, and their own personal challenges.
If you have a chance to see this program, please watch. It is well developed, and the relationships between the women and the nuns are well developed over time. If you are British, you will either appreciate the plans of the National Health Service, and if you are American, you will likely appreciate the manner in which we do things here. One thing is certain, as hard as I have worked as a critical care registered nurse in this country, I have never worked as many hours or as ridden a bicycle to work, as these women routinely did.
More information on the actors and awards on this remarkable television program and dramatic series:
Sunday, April 7, 2013
Four and a half years after Daniel's sudden passing, things about it still surprise me. Sometimes, I can't believe it happened, and I expect to enter his room and find everything as it was, as if the entire thing was a bad dream. Other times, I am surprised at how we continue to live our lives, almost as if he still travels with us, and is still a part of everything we do. Sometimes, it feels as if he and my father still are a part of everything we do here.
Yesterday was one of those days. Our daughter has wanted an oriental rug or two, in good condition, for her new home. Of course, as a new homeowner she can't afford, even with the great prices on oriental rugs in this economy, to go out and buy them new. She and I have, therefore, been watching Craigslist for them. It has been an exercise in patience as many of them are quite large, and still quite expensive. The day before yesterday, I found an ad on Craigslist about fifty miles from here from a family with seven reasonably priced small oriental rugs. I forwarded the link to my daughter who was excited, but who also had to work her second job yesterday. One of the things we have learned about Craigslist, is that if you want the item, you need to be available to proceed almost immediately.
With my daughter working, my eldest son and I called the seller, and arranged to travel there and arrive at about lunchtime. The traffic was far worse than we thought, but we still arrived just five minutes past when we had indicated. In short order, we bought all seven small rugs for a very good price, rolled them up and my son placed them in the backseat of my car.
The trip was sunlit and beautiful with all the Spring flowers in bloom. This is a trip Daniel would have enjoyed. My Dad would have appreciated oriental rugs so reasonably as a casualty of someone's simply redecorating ! Why, my father even had bookmarks like oriental rugs !
When we finally got home, I vacuumed the front and back, and aired them on the back deck railing, and readied them to give to my daughter today. She was very excited when we told her we went and got them, as she could not yesterday. She can use the ones she wants and then I will likely sell the remainder of them here. If she uses them all, that will be just fine. Once again, many of the things families need are possible without spending a fortune, especially for those who are willing to be patient, and are willing to do a little bit of work, in terms of travel. I am sure both Dad and Daniel would approve !
Friday, April 5, 2013
When Daniel was about one, we bought a large tract of land, and built a farm there. Daniel was just over two when we moved in. We spent about six years on our first farm, and had many happy memories there. We moved and built another farm elsewhere for several reasons. One, we had a neighbor who was behaving in a bizarre and erratic fashion, and when you have four children, you can't simply arm everyone, including children, and hope for the best ! Secondly, our property taxes there shot through the roof. We were left with the idea that we could sell, and rebuild a similar farm, put more money down, and owe less of a mortgage upon its completion. And so, we did what we always do, which was the thing that was best for our family. We sold the original farm we had built.
This was very difficult for us, although Daniel seemed to do fine. He liked adventure, and this brought many adventures, and much learning.
I learned this week that the new owners of our original farm have decided to sell and move away. I can't tell you how sad I am. Leaving the original farm was difficult, but it was made better in the knowledge that the purchaser of the house and half the acreage there, truly loved the home and would care for it. Now, we don't know who will have it, and whether they will care for it properly.
Still, nothing in this life stays the same, nor should it. It's a journey with change often as the only consistency. I would like to think that Daniel keeps an eye on the original farm also.
Monday, April 1, 2013
I had a dream just before awakening this morning at almost six am. I was shopping at one of my very favorite consignment shops with Daniel. In the dream, Daniel was about four but he was sitting in a large umbrella stroller, which we never owned in real life. By four, Daniel walked everywhere with us. The consignment shop had moved to a large storefront with a large parking lot, which also is not true to real life. In the dream, I had just picked up some lovely large new Christmas carrier bags I would use next Christmas. My eye had been caught by a lovely set of new twin sheets with sailing ships on them. I was looking at these when the woman working in the shop said, "Your son is outside". I wanted to argue because I had seen him in the stroller just seconds before, but I looked outside anyway. I saw Daniel riding someone's bike at top speed all the way out to the farthest reaches of the near empty parking lot. I opened the door and called to him to come back. Instantly, he rode the bike back. First, I thanked him for returning immediately, and I asked him to put the bike back in the rack. I told him that he could be hit by a car riding out there. He complied and came in. When he did, I gave him the biggest hug. Then the dream ended. I know I am lucky in order to have dreams of him, even though they exist in a place where he is not the age he was at his departure, and neither am I. I have learned to appreciate these blessings.