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".
Last night I had a dream that I was working as a nurse at a hospital. There was an acute nursing shortage and there were men there who had trained to be nurses as a secondary career, after the economy had made their original jobs not so lucrative. One of the men had been a detective. While we were working, a number of new medical students (young doctors to be) came onto our floor. They were all Daniel's age. (This must have been the future, perhaps nine or ten years from now, but I was the same age as I am now) Daniel was supposed to have been with them, but he was not, because he is no longer on Earth, and won't have this, and other opportunities. I felt the same deep sorrow and loss as I would have, had I been awake. If I create my own dreams for the most part, then why can't I create dreams with him or potential visits. Why do I instead create moments of sorrow and grief underscoring our loss ?
As you may remember, one of Daniel's friends gave us a kitten a couple of months ago. Tosh has continued to grow and become very strong and agile. I thought everyone might like to see how Tosh has grown up.
Today I had some routine doctors appointments. I dread them now feeling just a little ambivalent about doing things that will no doubt result in enhanced longevity, while Daniel is not here on Earth now. Still I went. It was a blisteringly hot day and I was very pleased when I found a parking space near the building. I got out and went to arm my car alarm when a lovely young woman who looked an awful lot like Queen Latifah, smiled and waved at me, calling me by name. I couldn't tell you what her name was, but I recognized her as a student who sat up front and to the right in one of the Anatomy and Physiology classes I taught Mondays, the semester before Daniel passed. "When are you coming back ?" she pleaded. "I don't know yet" I said, feeling sad, confused and silly all at once.
I have not embraced teaching college again for a couple of reasons. Number one, Although I do know that Daniel was proud of my accomplishments at the college, had I known that 2008 was the last year I had with Daniel, I would never have taught part time, or otherwise in the first place. I feel as if I have misused my time.....HIS time. Secondly, it is not a huge sum of money. I might be better off not buying college instructor clothes, driving as much, and staying in the lower tax bracket. Third, I am not entirely convinced that I could effectively stand before 40-50 students and speak of larynxes, intubation, resuscitation, without, when I least suspect it, imploding into tears, recalling the time I performed CPR on a witnessed cardiac arrest patient, the only time I got nowhere, and the one time, that I wanted to be successful most of all.
After pre-registering, I was still early to my appointment. I began to look around the office and saw pictures of all the employees. The "access specialist" is one of my students from 2007 who graduated this year, and who, was an absolute joy to teach. I require a research paper in each of my classes, and although I give a great deal of help, direction, and a booklet I have written with clear directions, I realize that English is not always a beloved subject to many of my students, especially if they had hoped to be studying anatomy and physiology. The woman in the picture was one of the students who was most concerned about the research paper, and who genuinely earned an "A".
I am not sure I can go back. I am not sure I have the reserve, but it is nice to know that once, I had a life where I could bring positive things to my students, and where I did not feel a loss as large as the Grand Canyon.
On a farm, loss and death are inevitable, though for years we have gone without losing very many, and we tend to lose sight of this. This year though, there was still another loss to come. Sir Gallahad is a fine 13 year old alpaca we purchased from the Pacific Northwest some years ago. He was a half brother to one of our dear breeding females Queen Isabelle, and he is unquestionably a dear friend in his own right. Gallahad is a favorite because he is a gentle giant, and has always been a calm and loving creature. We have been aware for some time that Gallahad had a low level ongoing medical problem, and this was being watched and followed. In late July, Sir Gallahad did not look well. In the course of a day he did not eat, looked short of breath and did not move well. With hard work to feed him, medicate him, conversations with the vet, and even antibiotics, he began to improve a bit. I cautiously believed he might survive this particular illness. We even took him for walks while tethered, to different parts of the farm to keep his energy and mood up. At the end of July very quickly in the course of an hour, Gallahad deteriorated, and while I sat with him, he passed. In those last hours, I had called the vet to euthanize him to prevent any suffering, but she did not arrive in time, and he passed quickly anyway. Daniel now has many animals he knew over the years, our golden retriever Susan, his german shepherd Jake, two large white chickens, and now dear sweet Sir Gallahad. Gallahad also joins his sister who passed of a brain tumor a couple of years ago, and a niece alpaca named Shakria who died while a (young) cria. I hope they are all together and all happy. It has taken me two weeks to be able to write about this. I know that when we love, being parted and losing is inevitable, but we seem to have more of our share of this lately. Sir Gallahad received a farm funeral fitting for any royalty or head of state. Be sure to spend time with your beloved animals today.
You might think that when I don't post it's because I am doing well and because I am out living my life, when in fact I think the opposite is true. I think I must be at a certain point of alright to be able to talk about loss and that I must be "alright enough" to share my feelings and recollections about things. Sometimes I am not "alright enough" to post.
The last couple of weeks have been difficult. After eight months,the final report on Daniel's autopsy came. Since we had talked to the teams doing the different types of autopsies, there was nothing we didn't already have information on, but still to see it written on paper was very real, frightening and anti-climactic. They have been very good to us, and have checked for any of the obscure things I had asked about, even when they might have been rare or not quite rational. There were things found, but none of them should have caused his death. He had an apparent viral syndrome that no one knew about which had caused some lymph nodes in his abdomen, small and large intestine to be slightly inflammed. He had an extra spleen, which is not uncommon either. His spleens and liver were slightly inflammed in response to the viral syndrome, but he had been well and complained of nothing. The pathologists said that these particular finding are not at all unusual in children, and generally resolve. He had the pineal cyst, but it was 0.7 cm and it is felt that this was not large enough to cause shifting of brain tissue or death. Everything else, including coronary arteries, brain etc. appear fine. The cause of death is cardiac arrest due to probable cardiac arrhythmia of unknown etiology (cause).
Strangely this news put me into depression, and once again I went through a period of self blame. I have trouble reconciling that if a child is sick enough to die, that the RN homeschooling him who was off for vacation for two weeks before he died, should have noticed something.
Because Stephanie has juvenile diabetes, I have wondered if Daniel could have also, and if his sudden cardiac arrest was due to DKA, but there were no ketones on his breath. (I can smell ketones across a shopping mall because I have a diabetic child) I did CPR on him. I put my mouth to his. I would have noticed ketones ! I have done some research as to whether Daniel could have had something called HHNK, a type of diabetic syndrome which is uncommon with children, but I am bothered by family history and the lack of anything else. HHNK is a non-ketotic syndrome affecting primarily overweight children who have diabetes. They have mild symptoms, may not be diagnosed, may be thirsty, do not spill ketones, but rarely can die. With much of America being overweight, there are journal articles expressing concern that doctors may not detect HHNK when it occurs, albeit rarely in children. Daniel, like most American kids with a computer, was a little overweight and has a very strong family history for Type I and Type II diabetes on his father's side. Since blood sugar determinations after death are not accurate, and we do not have portions of the body now for specialized testing, the HHNK theory will have to remain just that. Meanwhile, I feel incredibly guilty for not doing a monthly bloodsugar when I had a Type I diabetic child. The fact is that even the siblings of diabetics do not often develop it. Even in twins where one has Type I or Type II diabetes, the other twin may never develop it, because it is felt that the development of diabetes is not only caused by your genome, or your genetic predisposition, but also by your epigenome, which is altered by your exposures to viruses, foods etc. throughout your life. Even twins have different epigenomes. No physician who saw Daniel ever recommended it, even once. Daniel's annual chem 20 profile was always normal which included blood sugar. These internal discussions may not be useful though, as an endocrinologist I spoke with yesterday reminded me that Daniel's pancreas, on microscopic exam was normal, which she would not have expected it to be, had he been experiencing DKA or HHNK.
The ruminations of what I could have done to change his passing are not rational, but I believe they are normal. They are part of a coming to terms with a terrible truth, and I would not be honest, or really living in the moment if I denied these feelings. I love Daniel more than my life, and I would have done anything to change what happened that day, had I simply noticed something.....anything.
Could God have just called him, not leaving remnants of why or of how ?
