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Friday, March 27, 2015
When you were a very small boy and you wanted to touch something fragile, you used to ask very nicely, and then you would say, "I won't break it, I pomice". The first time you said it, I think you were about two, and your brothers and sister laughed, not at you, but with you. They too were enthralled with your use of language and even your missteps with it, which were often simply adorable. Of course, one correction was about all it took for you to promise in the future, but pomice entered the family lexicon of adorable malapropisms you used at least once. Somewhere I have a listing of all of them, and when I wrote the book about your life and times, I included a few of them interspersed with various chapters and events. You brought such joy to all of our lives, and in the remembrance of those times, you still do.
I have been remembering a lot of the things you said lately. Thank you for coming to our family. Thank you for your gentleness and kindness. Each time you promised not to drop the glass ball, not to crush the tiny kitten or frighten the tiny puppy, you kept your word.
Now it's my turn to promise you something. I promise that I will remember your legacy. I will remember as long as I live on the Earth, and likely beyond, my own days on Earth. I will also try my best to be there for your siblings whom I know miss you very much. Some of your dogs and your cat are still alive, and I continue to do my best to keep them healthy and happy, before they too move ahead to you. I will do my best to be the person you knew, only better. I pomice.
Friday, March 20, 2015
|Sierra Jaid Sims|
It never seems to stop. Yesterday, eighteen year old Sierra Jaid Sims attended her high school and complained of chest pain near the chorus room at her high school. Sierra was in good shape, and plays three sports, including volleyball. An ambulance was called as she collapsed upon entering a classroom. EMS said that she was having some type of distress and that she was able to respond prior to going into a cardiac arrest. When she arrived at the hospital she experienced a final cardiac arrest where she died yesterday afternoon. Of course, an autopsy will be done in order to get as much information about the cause of death as possible. My prayers are with her parents, her family, her friends and her classmates today.
I no longer accept that sudden arrhythmic death syndrome in teens is rare. I still don't understand why every student who wishes to play sports doesn't receive an EKG. This would not detect every case of Long QT Syndrome, Brugada Syndrome or ventricular tachycardia from other arrhythmic syndromes, but it would detect some of them in advance of a cardiac arrest, and it would save some of them.
I miss Daniel as much today as I did in that first year since his departure from Earth, now six years ago. Sierra was also the age that Daniel would be now, if he had lived past twelve and a half.
I pray that a day comes in which cardiac arrhythmic death syndrome in youth becomes truly rare, or the predilection is detected through screening after birth as is the case now with cystic fibrosis.
Please pray for Sierra's family and friends for whom the journey of missing her has just begun. By all accounts, people knew Sierra to be a lovely outgoing young woman who was well known in school for her role in multiple sports, and also for her playing the lead in the upcoming school play "Alice in Wonderland".
Update: Just after I wrote the original post above, the medical examiner's office released a cause of death. The medical examiner believes that Sierra died as a result of a large blood clot in her pulmonary artery. This was therefore not a sudden arrhythmic death per se, however, it is yet another sudden and unexpected death in an otherwise healthy young person. It remains sad and devastating to her family, her friends and her community nonetheless.
To assist Sierra's family with funeral expenses, you may click this highlighted link
Saturday, March 7, 2015
Living in such a profoundly rural place, Daniel and I spent a fair amount of time in the car while traveling from time to time. We would often listen to the radio. Mark Hall is the lead singer to a Contemporary Christian music group called Casting Crowns. I can remember listening to a lot of their music with Daniel. The group has a varied series of consistently good works.
This week Mark and his family learned that he has a solid tumor on one of his kidneys which is 90% likely to be cancer. The plan is that Mark will have this kidney removed as soon as possible, and that the pathology examination of the tumor will give doctors the information they need to plot a course through the rest of his treatment.
Please join our family in prayers for Mark, his family, and the group. May Mark come through the surgery and recovery safely. May his treatment which follows be speedy and effective. May he and the group return to bringing all of us inspiring and heartening music through all the trials of life for which they have been present for us. Amen.
Please send your own prayers for Mark and his family. Just a few of the songs which have been the backdrop of all our lives include:
The Voice of Truth
If We Are the Body
Who Am I Does Anybody Hear Her?
Praise You In The Storm
East to West
Until the Whole World Hears
Of course, since Daniel was called home to God in 2008, he was not here to tell us what his favorite Casting Crowns songs would have been after 2008, however while he was here, this was his favorite Casting Crowns song.:
Link to more complete listing of Casting Crowns songs
Update: Mark came through the initial surgery exactly as expected, and is taking time to recover before starting the next phase of treatment. His wife Melanie has indicated that he and his family are very humbled and grateful for the prayers and the outpouring of concern for him.
Sunday, February 22, 2015
Zofran is the brand name for a drug whose generic name is Ondansetron. It is a prescription drug often used for severe nausea and vomiting as often seen in viral illnesses of the stomach or "stomach flu". It may also be used in conjunction with cancer chemotherapies which can produce severe nausea and vomiting.
It is occasionally used to treat hyperemesis gravidarum or the severe abnormal exaggerated upper gastrointestinal response to the hormones of pregnancy. It is not indicated in the treatment of normal nausea and vomiting in pregnancy. There are some occasional other uses particularly in the field of addiction and withdrawal. The drug is available as an injectable and also in an orally disintegrating tablet.
In general, this is a good drug. It can help to prevent the admission of a patient to a hospital for overnight intravenous hydration by quelling the cyclic severe nausea and vomiting of certain viral illnesses. It can help to advance the settling of one's stomach sufficient to allow some fluids taken by mouth and this is a largely positive thing. It can help to make chemotherapy more tolerable for a patient who requires it. It can allow the patient to complete a recommended course rather than to electively abbreviate or terminate it.
However, there are a subgroup of people who need to be particularly careful prior to using this drug. Ondansetron is noted to have the capacity to lengthen the QT portion of an otherwise normal EKG. In a susceptible subgroup of patients, this can lead to arrhythmia and potential for sudden death. Certainly anyone who experiences a rapid heartbeat or any noted change in heartbeat while taking Ondansetron should return to the hospital emergency room.
As the parent of a child who died of a sudden arrhythmic disorder which had been unknown to his doctors and to us, why would I mention it ? Daniel did not use Ondansetron prior to his sudden passing. However, this may be of issue to those of you who have lost a child or family member and who have other children or family members who may have the same proclivity to arrhythmia, which may be as yet undiagnosed. Two of Daniel's brothers have in fact, used Ondansetron for a day or so following a stomach flu on two separate years. We did use the drug knowing that arrhythmia was a potential side effect, but the emergency room physicians ordering the drug made the decision that the benefits outweighed the risks at that particular juncturet of the treatment. Both young adults were well enough to be able to discontinue the drug after the initial 24 hours of use.
My reason for letting all of you know about Ondansetron is that even among the population of those who have lost a sibling to a sudden arrhythmic disorder that there can be an appropriate short term use for the drug. You should also know that a sibling of someone who has died of presumed Long QT Syndrome should not receive this drug in the longer term.
Make sure that any physician ordering drugs for your family or your children know that you have lost a family member to Long QT Syndrome, if in fact, you have.
As always, just as my thoughts and memories are always with Daniel, my thoughts are also with the other parents and families who suddenly and inexplicably lost a healthy child to a sudden arrhythmic death of which there is most often, no warning.
Tuesday, February 10, 2015
Yesterday afternoon I was working with the horses and the alpacas. I was moving alfalfa, sweeping out stalls, rinsing out water buckets as I listened to the radio I tend to keep on in the day for the animals. Only one station stays on playing calm music and interviews all through the duration of the day. It's not my favorite station but it goes a long way to keeping animals calm especially when there is bad weather which is amplified by the tin roof. Yesterday as I swept I listened to the story of a young boy who had a serious cancer at age ten. His mother had moved Heaven and Earth in order to get him into some experimental studies. From the interview he was a precious boy and for a moment I understood his mother's quest to do almost anything to keep her son alive. As I listened, swept, mopped and distributed a coat of thin pine shavings to a shiny stall floor, I was hopeful. Certainly such a promising drug regimen would work on children as well as adults. I expected to hear good news, and so I slowed my work for a moment to listen. I was unprepared for the news that the boy, Joey, had not responded to the drug and had died the day before Thanksgiving. All at once I recalled that Daniel had departed from us the day after Thanksgiving. The feeling sat there in my abdomen as if I had been gently kicked by a short horse ! I was especially saddened to hear the interviewer ask the mother if she had regretted continuing treatment when the doctors had given them the option to go home to die and to see his friends. She had decided to stay the course waiting for her miracle, and this time, it had not paid off. At first she said she thought she made the right decision, and then even within the same sentence, she changed her mind. This is a doubt I think she will have all of her life. Sadly, when we lose a child every choice we ever made will be periodically second guessed. Why did I not take Daniel to a cardiac electrophysiologist at twelve ? Because I had no idea he would develop a cardiac electrophysiological issue. Why did I not let him stay out later a couple of days before his passing ? It would have been unlikely to have made any difference, and he would have enjoyed it. Why did I not divert money from other things we did here, and take Daniel to Europe ? Because, at that particular juncture of his life, he would rather have stayed here on the farm with his siblings, his animals, and his computer ! Parents who have lost children will always second guess the choices we made with them I suppose this comes with the territory. There is something we can do though. When we hear of someone who has lost a child, we can support them in the choices they made. We only have limited information when we make some of the choices for our children. We don't have a crystal ball. We don't know all that will happen in their future lives or in our own. We need to work to understand and accept that we made the best choices for our children with all of the information we had at the time. We would have done nothing less for our beloved children. My prayer yesterday is for Joey's family and particularly his mother. May she come to know that she did everything she could for him in a difficult situation, and that he knew that. This is what I wish for all of you who come to Daniel's blog for some crumb of wisdom.
This is a link which would allow you also to listen to the story of Joey Xu
Sunday, February 1, 2015
Wednesday, January 28, 2015
|Even in grief, the happy memories should never end.|
This week I have spent some time taking care of my new infant grandson while his mother has been working, ensuring excellent insurance coverage for his cystic fibrosis. A great deal of his care is nursing care, rather than simple infant care. Much of it is also time consuming. Toward the end of the week while he was sleeping in the afternoon I had a chance to go through some things I've had in boxes. It is time to either decide to give some of the more lovely momentoes of our children's babyhood to my daughter, or to donate them. We simply can't keep everything, although believe me, sometimes I have tried ! It's time to free up more storage space, at the very least.
In one box I found a china half moon lamp which sat in my eldest son's nursery during the first year of his life. I found some pewter banks shaped like a carousel which were baby gifts for one of our children when they were tiny, although I am unsure who gave it to us, or which baby was the lucky recipient. I found all manner of child safe night lights. At the bottom of the box I also found a perfect framed picture of Daniel which oddly was taken at about the same age my daughter's baby is now. It was almost as if Daniel was wishing to say, "I remember when we were together and you were taking care of me at his age !" This framed picture sat in Daniel's nursery on the dresser in our home in the suburbs, until we moved to our first farm, and then, for a time, Daniel shared a bedroom with our other son Matt. Many of the things in his first room were simply never used again, and then so quickly weren't really age appropriate any longer.
I thought that perhaps in taking care of my grandson that the moments of caring for Daniel as a baby might blur, and I might forget details of Daniel's babyhood. Strangely, this has not at all been true. Just as my other children were, each of them are distinctly different individuals. In fact, caring for my daughter's baby has actually helped me to remember Daniel's babyhood in detail as well as the distinct differences between each of my children in babyhood just a short time in much more detail.
I am not yet sure what to do with some of the articles I found in the box, but the blond framed picture of Daniel at four months will have to go in a position of honor where I see it from time to time. Daniel, your beautiful flesh suit may not be on Earth now, but it was, and I plan to remember each of those days as best I can, through the remainder of my own days here on Earth.
Tuesday, January 27, 2015
When you passed so suddenly six years ago there were many things I could not do, and in the shock, many things that were not immediately available to my memory. You loved the internet and had quite a life there. Although I had been a part of setting up those accounts initially, because you had been so young, I not only didn't recall your passwords, but I couldn't remember where the paperwork where I kept them had been. This was sad because you completely disappeared from your internet haunts and from computer gaming with no explanation to internet friends. Some time later your brother Matt did inform some of the groups where you and he had been members, but I have always felt that I failed you by not properly managing your internet legacy.
Today, while getting a jump start on early Spring cleaning, I was working on filing and throwing away a stack of papers I found in a file stuck between furniture in my room and the bed. From the receipts and paperwork most of which I threw away, it had been there for quite some time. One of the papers I found was the registration confirmation to your e-mail account. I had long since forgotten your ID and your password was penciled in below it. You hadn't used this account since November of 2008. Well, I am assuming that because this is when you ceased to occupy your flesh suit here on Earth. I don't know why, but I decided to log on and see if your account still exists. Apparently, following a period of disuse, the id again becomes available. I decided to reregister all your information as it was, in case any of your friends ever try to contact you, in future. At least I could tell them what happened. Everything we had registered before is now entered, except that they needed a longer password that we had used initially, and they needed a cellular phone number. I used the same pseudonym you has used before.
I don't really know why I did this. Perhaps in some small way, having your e-mail address reactivated means that you never really died. Maybe you just exist on a plane of thought and energy and can check e-mail telepathically. Maybe in some way, you are aided by having your e-mail activated. Maybe you will simply recall how important you were and are here among the family you have still tied to Earth.
Feel free to shoot me an e-mail. With an e-mail address, you could review the book I wrote about you. In all seriousness now, you are, and always will be, truly loved and truly missed.
Tuesday, January 20, 2015
|Sometimes, it seems as if the farm and the animals cry in Daniel's absence, a lot like the frozen holly. I hope he is doing something important where he is.|
I try hard not to look back at the time pre-2008 when Daniel was still on the Earth, and compare it too strenuously with the present day. To me, his mother, it seems that life when he was on Earth was in color and one good thing happened after another. Following his sudden passing that day, it too often feels as if the color, the sense of humor and too much of the hope in life, evaporated with him. I am very mindful that the loss of a child must be even more intolerable for the family without other children. I have been fortunate in that we had three other children, and that we adopted a son the year following Daniel's departure. This gives us other souls to love and with whom to engage. Sometimes, the spirit of Daniel is palpably missing from many family gatherings.
And yet, once in awhile there is a special day. Late in 2014, in the week that followed Christmas, our daughter and her baby were at the farm, along with our eldest son A., and our son Matt, who was home from the university. J. who is our son who came to us through the blessing of adoption, was also there. In just one block of time, I felt both Daniel and my Dad there for the gathering. There was laughter and amusement. There were irreverent jokes and for a moment, I almost forgot that Daniel wasn't really here in the flesh. The legacy of Daniel won't be a large family of his own, however it will be a family who was indelibly impacted by his intellect, his humor, and his music. Without my father, none of us would be here on Earth ! Yes Daniel, we are still here, and in many ways, so are you.
Thursday, December 25, 2014
|Picture from: justletmevent.wordpress.com|
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.