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Thursday, October 28, 2010
My dear Dad passed two years ago this week. He was scarcely in Heaven before Daniel joined him. Now, two of the most important men in my life are beyond the veil. (The one I have known the longest, and the child I had with me for only 12 1/2 years) They can contact me, but I can't reliably and realistically contact them, and if I can, I can't always get reliable answers.
However, today I think I did. I have tried in the last two years to carry on as my father did. He did many charitable things even prior to retirement, and was involved in many different types of ministries of his own creation, although he did not call them that, or take credit for any of it. Dad had several funerals or gatherings of remembrance by different groups of people he had helped through life. One of these projects was a prison ministry for which Dad received certification as a corrections counsellor. This had not been known to me until his passing when I found some of these certification papers at his home. Dad believed in quietly doing good and not taking credit for it. Dad had a longstanding correspondence with a particular prisoner whom Dad truly believes has been wrongfully imprisoned for many years. For the purpose of this blog, I will call this man Richard. The parole board will not reconsider his release because they would have to admit that many things were quite irregular in the courtcase. Dad is not the only group working for this man's release, but Dad may have been working the longest and been one of the most steadfastly communicative.
I have tried since Dad's passing to keep up with many of his charities on his behalf, but I have fallen short. Between our family, and being who I am, and moving through life with my husband and my children and animals, remembering Daniel, there is not enough time to do everything and some of Dad's tasks have slipped.I stopped writing to Dad's wrongfully convicted prisoner because I misplaced his updated address and prisoner number.
This week I asked Dad if he could find it for me, and I would write the man again. Yesterday, on the second anniversary of Dad's passing, a sealed white envelope was to my right on my desk. I had no idea what it was so despite the clutter there, I opened it. Inside was a copy of the last letter I had written to Richard,the man in prison that Dad had helped, his current address, and prisoner number. I immediately wrote a letter, stamped it and will send it out tomorrow. It's almost as if Dad answered me on the second anniversary of his passing.
Saturday, October 23, 2010
central heterochromia, green with brown
from outer edge inward, blue, green, and brown
This is likely the picture of our Daniel which best shows his heterochromia. A larger version of this picture appears at the end of our blog pages on the right.
Our son Matthew,a college student, six years Daniel's senior, came to me to mention something this week after our time at the hospital. He told me that he had noticed from pictures that Daniel had central heterochromia and he wondered if this unusual fact was associated with any disorders which could have produced sudden death. This was amazing to me because although I had heard of central heterochromia, and I recognized that Daniel had absolutely beautiful eyes, I personally did not put the two together.
There are a few different types of heterochromia. Central heterochromia iridis refers to the iris of the eye,which is normally one color, being more than one color. Characteristically in central heterochromia, the outer iris is one color, and the inner iris is another, giving the person interesting and unusual eyes. Daniel had eyes which we described as hazel, but were hypnotic by virtue of their green with multi-colored highlighting and speckles. I have not been successful in associating this with any sudden death syndromes although very occasionally, it can be associated with some disorders which Daniel clearly did not have. On a side note, a number of celebrities are said to have this also. Tom Cruise, Mila Kunis, Hugh Jackman, Angelina Jolie, Robert Downey Jr., Emma Roberts, Kristin Kreuk, Kristin Scott Thomas, Rowan Atkinson, Al Pacino and Robert DeNiro,Amy Winehouse, Lady Gaga, AKA Stephani Joanne Angelina Germanotta, Ivanka Trump and many others are all said to have the hazel version of central heterochromia,like Daniel. Keifer Sutherland, Michael Flatley, Christopher Walken have a different version of central heterochromia which is said to incorporate blues rather than greens. Still other varieties may be sectoral versions of heterochromia or a different color eye on each side in some also. Jane Seymour has one blue eye and one brown. Heterochromia is thought to afflict one in ten thousand human beings. This is a fascinating website with pictures on the subject:
Interestingly, many of those mentioned have eyes similar to Daniel's.
Although some people with heterochromia do test perfectly normally, it is considered an affliction by virtue of the fact that it is associated with a number of disorders. Hirschsprung's Disease and Waardenburg Syndrome and others are associated with it. The associated disorders were ruled out in Daniel, on autopsy.
There are some additional rare disorders that may be associated with heterochromia. For those with pressing questions and concerns, below is a genetics laboratory, which discusses testing:
Friday, October 22, 2010
This has been a difficult and overwhelming week. Daniel's oldest brother,Adam, had a cardiac ablation as an inpatient this week. Normally, for the sake of anyone to have such a procedure, I would stay factual in my description of it and say little more, but this was difficult.
Ablation is a procedure in which a patient, who could be young, experiences a periodic disturbance in heart rhythm. Sometimes, these heart rhythm disturbances are life threatening in some people, for others, they are not but they do result in impaired pump function and the person feeling less than well. For some, medications are adequate as a means to control, but some people, require the ablation or burning of certain nerve groups inside their hearts, which trigger a competitive rhythm. Catheters are placed in the groin on both sides, and are threaded up and into the heart, and also some through a vein in the chest. The conduction system of the heart, both the healthy system, and the extra competitive system is mapped. Often, the unhealthy rhythm is induced through the use of intravenous medications. When the competitive system is identified, that particular nerve or nerve group is ablated or burned with something which is a lot like a cautery. Scar tissue forms and theoretically at least, the area is far less capable or prone to producing a competitive rhythm in future. For some this can be a lifesaving procedure, but for Adam, this corrects an intermittent problem and may help him to be healthier and more productive in the long term. Intermittent atrial fibrillation, as Adam has, weakens the heart and shortens life through both abnormal cardiac adaptation over time, or by potential for stroke. Originally, before Daniel died, Adam's issue was considered to be fairly benign and was handled by medication. However, after Daniel died unexpectedly and without demonstrable cause, cardiologists took a new look at Adam's management and decisions concerning his rhythm issue. They were no longer quite so comfortable treating with medication alone, and felt intervention was more prudent. My father endured thirty years of non-correctable atrial fibrillation which gradually caused cardiac changes which ultimately took his life.
Other than the information above, we weren't given a great deal more information as to what the experience was like. This was largely I think, because if we had known, we wouldn't have proceeded. In preparation, there was a physical, an MRI with injected dye, and coagulation (blood clotting) studies. Then we arrived early in the morning for the procedure. It took a couple of hours to place the catheters and then the mapping began. Adam is said to have been medicated with Fentanyl and Versed during that time. Once the area responsible for the episodic atrial fibrillation was identified, a fairly large region, an area within an antrum in the back of Adam's heart in the vicinity of the pulmonary veins was ablated.(Yes, Adam has a slightly different cardiac configuration than most people.) Most people I have talked to since, had an easier course, but then, they had less surface area ablated. Some patients have their problem resolved with one ablation, and still others return a second time for the procedure, with improved results a second time.
Adam woke up in the hospital later that night unable to breathe and in excruciating pain from his chest. A cardiologist came in,did a chest x-ray on the unit, and a echocardiogram,and it was determined from listening to an audible rub with stethoscope, that he had developed a pericarditis from the procedure itself. This apparently can occur 25% of the time, and most often in males. Injectable non-steroidal anti-inflammatories were ineffective, and intravenous morphine was ultimately used to contain his pain. This was probably due to the ablation of a larger area than is done in most people, and was required in order to diminish the frequency of Adam's arrhythmia in the future.
Adam was in much worse shape than we were prepared for, prior to this procedure. In all honesty, for the possibility of an arrhythmia less often, I am not sure he would have signed on for what he experienced. He continues to recover but with a higher blood pressure and higher pulse than was anticipated. This is felt to be a result of his pericarditis.
At one juncture that evening, at about 2 am, while Adam was in severe pain, and there was some question as to whether the nurse would be waking up the physician, I wondered if I would lose Adam also.
In addition, we were not told that after he came home, he would continue to receive some injectable anticoagulants and that he would receive continuing coumadin for three months to prevent blood clots. He will also have to have periodic bloodwork during this period. It is possible that in the future we will be happier about this procedure, but for the moment, it was quite difficult, and we have the medical equivalent of "Buyer's Remorse".
The evening after the procedure when Adam was in such pain, I imagined Daniel saying to me....."Mom, I would prefer to have died than to have to have gone through this myself !" Since Daniel at 12 had less of a tolerance than Adam, this may well have been true.
Important update to this post:
Many people are helped by this procedure, but a percentage of them do need to have an ablation done again. Adam has experienced a symptomatic atrial fibrillation twice in the six months which followed the procedure, which is, an improvement. In the two years which have followed, he has not experienced any atrial fibrillation.
In addition, it should be said that some patients who require an ablation for atrial fibrillation require something called a PVI or pulmonary vein isolation. A PVI is generally a shorter and less difficult procedure than the "cadillac of ablations" which Adam apparently truly required.
Sunday, October 10, 2010
Fall is a magical time here, yet confusing also since Daniel's passing. It is the time of year when so many of our relatives have passed, most expectedly. It is also the time when just two short years ago, Daniel was called from us without warning or explanation. All we have is suppositions of pathologists, educated guesses, thoughts, theories and questions. Perhaps if the entire obvious world dies away when Daniel departed, he can return somewhere to Earth when God magically activates the buds and flowers in Spring. It's hard not to think this way sometimes.
In reality, I still believe that Daniel resides with God and my Dad and that it wouldn't be much of a Heaven for him (or for that matter, for Dad) if he were not able to see and get news from home, and so I believe he does.
Some years ago our daughter began a correspondence with Irish musician John McGlynn. I had the pleasure of exchanging some e-mails with him also. He was the original male vocal lead in the Riverdance music. He is also a wonderful songwriter and musician in his own right, despite being a qualified architect. I did try to embed the music from MySpace for today but instead, please take a listen to one of John's songs, "I Know You Hear Me". The link is below. Daniel also enjoyed John's melodic music. He was fond of his solo CD "Songs for a Fallen Angel" and also of the music from Riverdance.
Tuesday, October 5, 2010
In the beginning of our losses of 2008, when I began to have dreams in which I spoke to and received information first from my Dad, and then from Daniel, I believed at first, as a scientist, even one with faith in God intact, that these were self generated. I believed that my grief was so great that I created a world in dream in which we could continue to connect based on what I knew about their personalities and likes and dislikes while they were on Earth. Since I chose not to take any medications following their passage, this aberration in dream, I believed to be a tolerable coping mechanism, and as a nurse, we are not to take a coping mechanism from someone without anything to replace it.
When things outside dream began to occur,I questioned my sanity and learned from a psychiatrist that I am not only quite sane, because others have experienced the same things as I, but I learned that I am rare. I am rare, they said, because I am so honest about it. What is to lose ? I have already lost my Dad and beloved son Daniel, and many others here from Earth. Why do I really care, if privately, other people, other professors, think I am a sandwich short of a picnic basket ? That I am altered and damaged by my grief? I don't really. I believe that somehow, in reading my musings, others may recognize things I have said and realize that they also are not alone. We are inextricably linked in incredible ways to those who love us who pass. They watch us, and remain able to communicate with us, if in fact, it is deemed positive for us for them to do so. I apparently, need a lot of communication and encouragement in this part of my life, and so, for the most part, I receive it. It's also part of God's unending love and grace. No matter how bad the going gets here on our missions to Earth, God never leaves us, never turns his back and never ceases to care. He will always be joyous on our return home to Him.
Of course, those of you who read the blog from the beginning know that apparently, I was not creating this communication point in dreams. We know now that I (and other family members) have received verifiable factual information about things of which we could not have known, without information from Dad and from Daniel. Most notably, detailed information from Daniel about his autopsy, and information from Dad as to the location of the bolt to his rifle, and the location of certain papers needed to complete the settling of his estate.
In a recent post, I had wondered why, since this months diagnosis of Lyme Disease, I had not heard from Dad or Daniel. I wondered if Lyme disrupted REM sleep when I believe we communicate, or whether Dad and Dan have have moved higher, or somewhere where I cannot hear them as readily in dream. I always wonder if, since I do not control our interactions in dream, if all our after passing communications are over. I have wondered if our "clear channel" is a "limited time only" gift from God to ease the pain of their passing, and that ultimately God will say......." You know I have them here and that all is well, now go finish your own work, and we will all see you later." I am happy to say that this has not happened yet.
Last night I had a difficult time with the joint pain. My shoulders and knees are worse again, and my sleep is frequently interrupted at the moment. I am not resting well. Despite this strife, I did however, hear from Dad. We were standing together singing the "Star Spangled Banner". I could hear his voice and mine as we sang. I know this was signficant and is telling me something, but I do not yet know what or why. It will take time to have this unfold. I also learned something else..... My father had a best friend from whom he became estranged some years before Dad's passing. When my parents divorced, it created strife within a number of married couples, the wife who sided with my mother, and the husband who felt loyalty to my father. I will call this couple, for blog purposes, Michael and Vivienne. My father withdrew from his best friend Michael, to allow my mother to continue to receive support from Michael, and his friend's wife Vivienne, who was my mother's dearest friend as we were growing up. I am not in touch with them now and haven't been since about 2006.
Last night, I learned from my Dad that his friend Michael, has Alzheimer's, or some other type of dementia, and could use help particularly with something concerning his home. I don't yet know whether I am being asked to do something in this regard, or whether this is an explanation as to what Dad is doing presently. I also was told that Michael's time for passing is coming soon, and that his family and friends are near him. I know from the clarity of the dream and from my father's presence that this is communication and not just random dreaming. Interestingly, there was no mention of Vivienne, or of their long grown children.
Sunday, October 3, 2010
These are difficult days. Today the weather on the farm was exactly as it was the day that Daniel left Earth. It was still green but with yellowing and changing trees, with a cool temperature, fluffy clouds, slightly overcast and with a sun which appears to backlight the world. It is also the month that my father passed almost two years ago.
We are preparing for our oldest son Adam's cardiac mapping and ablation. There will be tests and studies prior to the procedure and although the procedure itself entails risk, the hope is that he will not episodically continue to revert to atrial fibrillation. It's also a hard time to prepare for this procedure. Several days ago, Adam and his fiancee of a bit more than two years decided not to continue, and not to marry. It is a mutual decision, yet any significant change in habits is always difficult. We will miss his fiancee and her family, and their animals, as they are moving as well. Daniel was particularly attached to their cat MacIntosh, for whom our cat Tosh is named. They were also very much present and active at the time of Daniel's passing and the time afterwards,in fact, we had Thanksgiving dinner with them the day before the morning Daniel passed so suddenly.
Their leaving is a furthur reminder that nothing ever stands still,and that sometimes things we thought would work out, do not.