Tuesday, January 27, 2009

Some Days Are Dark





Since Daniel has died sometimes I am surprized that the world went on. Sometimes I am surprized that I function as well as I do, that the other kids can laugh and sometimes so do I. Sometimes we tell jokes that Daniel liked and we remember and we laugh, and then there are days like this one. Since Daniel passed, I try to be as busy as possible during the day. First, I think this is what he would want of me, and second, I do best when working to achieve something. I have noticed that I avoid staying home for the entire day and I avoid housecleaning. There is only so long one can avoid this. I must do laundry, pay bills, write letters, and begin to organize his room and perhaps put some of his things away, if just for safekeeping.
Today we have an icestorm and intelligent people are home in their houses, and yes, they are likely cleaning, doing laundry and catching up. I find that grief makes it hard for me to focus and achieve as much as I normally would. My "organizational chip" is down. The woman who used to be able to organize, clean and toss is not present. I clean a little, find something that comprises a memory, cry for a little while, place whatever it is in a freezer bag, and save it as a momento. Most 12 year olds are not the neatest creatures on the earth and our beloved Daniel was no exception. He had a lot of things, and a lot of paperwork, and I am afraid that it is not rational or realistic to save them all, but somehow, part of me tries. I think if I could, I would have his laptop bronzed.
Today, I am sad. I am missing the wonderful young man with the dry sense of humor who loved British comedies and video games. He could imitate and recite long stretches of "Black Adder", "Red Dwarf", "Fawlty Towers" and "A Bit of Fry and Laurie". He could sing all of the songs from the Fry and Laurie series. Although I wasn't pleased, he thought Stewie in "Family Guy" was a scream. Daniel also was compassionate and understanding with animals. He was gentle with the ducks, the chickens, the alpacas, the dogs, the rabbits, and any other animal that found its way here. He was even loving and understanding of our roosters who can be downright aggressive. There is a bombcrater where my beloved son used to be, and although I still have three wonderful children older than he is, and a wonderful husband, this does not entirely compensate for such a deep loss.
I know that when its not so cold out and we are not in danger of losing power that once again, I will cope better and make Daniel proud of me. I know that he is home safe, but I also know that I miss him terribly and that it's almost more than I can bear. Still, I know that I am cut from strong stuff, as he was, and that I can do what I need to to make God, and Daniel proud of me.

The clip below is a song which Daniel did know. He is not the animation creator of this particular piece, but he did this type of thing and would appreciate this one.

Monday, January 26, 2009

What Really Happened to Daniel ?


Since Daniel passed, the doctors have been telling us that likely, he had an unexpected disturbance in heart rhythm and that this rhythm was incompatible with life. We are being told that there was nothing we could do to anticipate this, and that this "happens sometimes". We have not really bought this. The doctors have been focused on cardiac testing of our other children in order to prevent another such occurance, and this indeed is what has been taking our time.
When Daniel went into the bathroom, one second he was talking to us and the next, there was a gurgling sound. It was incredibly rapid, almost as you would turn a switch. When his father and I entered the bathroom, we found him on the floor, but his skin was warm and pink, not at all the way I am accustomed, as a former critical care nurse, so seeing someone in full arrest. In addition, as we turned him over (he was on his abdomen initially) his eyes were half open with one facing outward left and the other outward right. When I tried to position him for mouth to mouth and ultimately CPR, his neck was taut. Normally, a person in arrest can have their head tilted back with one hand. It was effortful for me to position him for CPR. Both his father and I believed that some type of seizure occured. The doctors were undaunted, stating that once the heart stops the brain indeed responds with seizure-like activity. Still, we wait for autopsy results while processing this terrible loss.
After Daniel died, for several days and especially during the funeral, we felt his presence. I can't be more descriptive than this, it was simply a feeling that he was with us and knew what we were doing, and wanted to be near us to comfort us. I have had some dreams where Daniel has spoken to me since, but they have been largely symbolic and brief.
On Sunday morning, the 18th, our son Matthew told us he'd had a dream. (It would actually have been on Saturday the 17th) He said that Daniel had come to him in a dream. Daniel told Matthew that he had entered the bathroom, sat on the toilet, felt nauseated, and stood and vomited in the sink. Then his vision went blurry and he passed out on the floor in front of the sink cabinet. Daniel did not think it was his heart. He told Matthew that he thought it was something in his brain. In the dream, Daniel proceeded to tell Matthew that his brain had been a great focus of the most recent part of the autopsy. He described how his brain was "cut in half" and that there had been great discussion about something that had been found in the middle of it. Daniel seemed fine and was relating this, just as he would have related an episode of Stargate. He wanted us to have this information so that we would not be quite so cardiac obsessed.
On Tuesday the 19th, we spoke on the phone to one of the pathologists who has been the liaison with us. (Normally, there is not communication with them. A report is issued to your doctor and he explains it to you.) I asked if she'd found something, and she said yes. I said, "It's neuro, isn't it ?" and she reponded, "Yes". She told us that a large pineal cyst had been found (which is located in the back center of the brain) She indicated that a pineal cyst which impedes the flow of cerebrospinal fluid and causes seizure and death is exceedingly rare, but that this is a significant abnormal finding. I told her what Daniel had Matthew on Saturday. With all the mettle a female pathologist must have, she seemed unsurprized.
With this, I began as much research on pineal cysts as possible. Small pineal cysts are a common finding on many autopsies, in fact as many as 41 %. For many people, they are completely asymptomatic, but for others, there may be intermittent headaches. Rarely, a cyst can become large enough to necessitate draining, especially if it begins to cause nausea or visual disturbances as it begins to impede cerebrospinal fluid (CSF) circulation through the ventricles of the brain. Only two other people have ever been documented to have died from a pineal cyst. When a cyst creates these cataclysmic difficulties, it is referred to as pineal apoplexy.
We are sad. We remember only twice in three months Daniel complaining of a headache. Both were when he got up in the morning. I attributed both to his allergies and gave him Claritin, but told him to let me know if the Claritin did not work. In both cases he was better in a half an hour. I now realize that these headaches may have been due to increasing intercranial pressure and that they improved only because he was up and around and had better drainage but not due to Claritin. I also now remember that he did once complain about his eyes being tired and a little blurry, but he would spend considerable amounts of time on his laptop computer, not only doing schoolwork, but creating animations, in which he was extremely gifted. I resolved to take him for an eye exam after Thanksgiving because he might need glasses, although I fully expected his eye irritation to be of allergic origin, as it is with the rest of us. I can only remember his mentioning nausea one or two times in about three months, generally when we drove in the car. He has been prone to feeling carsick all of his life. So we now begin the process of being grateful to God that Daniel does not seem to have suffered in association with his passing, and that somehow, he didn't really experience symptoms sufficient for him to alter his life, complain or worry. We never saw anything that indicated to us that anything was wrong. He was active, happy, and for two weeks I had off immediately before he died, we spent a great deal of it together. I am grateful for the time we had together but, in all, we remain heartbroken.

Note written one year later: Subsequent pathologists, on studying the autopsy data, albeit world experts on neuropathology believe that Daniel's pineal cyst, which was unruptured, was too small to have caused his death. They are still unclear on a cause of death.

Sunday, January 25, 2009

The Depth of Our Sadness is Wide and Deep


One of the most difficult aspects of losing a child beside the overwhelming and unsettling sense of loss, is guilt. It does not matter why your child died, whether your doctors are telling you that it could or couldn't have been anticipated, there is still guilt. God gives us each of our children and it is our primary job to protect and to love them, and if your child dies, your sense is that you somehow did not live up to your cosmic responsibility.
The way that I process this guilt is to learn whatever I can about what took Daniel and try to make sure that nothing similar happens to any of our other children. I cannot do more for Daniel, but I can do this. Someday perhaps I can find a way to inform other people of these hazards and perhaps prevent other people from experiencing what we are now.
At first, when we obtained what they call "autopsy services", we were told that we might never know what happened to him. We were told that occasionally, despite everyone's best efforts, no tangible provable cause is found, and then we would have theory alone. We were told that the complete autopsy could take months. Although the initial one is completed within a day, organs are often retained for longer term study, so we may not have solid answers until Spring or Summer. Our autopsy was divided into several different components. 1. Abdominal 2. Neurologic 3. Laboratory (Toxicology and Genetic testing etc.)
The abdominal went rather quickly and had some incidental findings which did not contribute to his death. Initially, we were told that because we had a history of two grandparents with cardiac arrhythmias (rhythm disturbances) and one child at home with one, is that the likely cause of Daniel's death was arrhythmia. The doctors cited Long QT syndrome, Brugada Syndrome and others as potential causes. The reason this might never be known is that an arrhythmia is a functional not necessarily a structural abnormality, so it can be difficult to prove after death. Apparently, there are a statistically small number of young people who are completely well, and then, often at sporting events literally drop dead and resist expert efforts at resuscitation. I have also learned that in some countries, this is a frequent cause of death for young people, second only to accidents. This opinion on the part of the doctors surprized us because Daniel never complained of shortness of breath, a rapid heart or anything that could have been a precursor to a sudden arrhythmic death event. Still, although we have a pediatrician and Daniel was followed by a allergist, I felt guilty. The nurse in the family should have asked for an EKG because others have had arrhythmia, I thought. The fact is that we cannot request every test, every study and that although EKGs are done routinely in Spain and Italy, they are not routinely done on 12 year olds in this country.
So we try to live our ever changed lives wondering how Daniel could have passed without our realizing that something was wrong, and if there was something, why we did not notice. The depth of our sadness is therefore wide and deep.

Saturday, January 24, 2009

Things People Do and Say



At his point, the funeral was over, and I think that Daniel would have been amused and pleased with many of the things said. I think he would also have been embarrassed to be the center of attention too. Oddly, we all felt that he somehow knew what was being said. The minister who did the service portion did a wonderful job. He had lost two brothers as a young person and we could all tell that he had thought a great deal about everything he had said. It was a personal testament to the Kingdom of Heaven with biblical references, not a dry, lazy, or hollow sermon.
People are funny. Some of the people I thought were close to us literally, in effect, abandoned us in this time. We just never heard from them after we notified them. Others flew across the country to be here at great personal expense and difficulty. Our neighbors out here in the country, were wonderful. Every one of them came by, some brought food, others a beautifully handwritten card. Some of the people from our internet groups were also terrific. The people at my job were very supportive and many where my husband works were the same. Many people don't know what to say when a family loses a young person. The fact is, there is not much you CAN say other than "I am so sorry for your loss" and "If there is anything I can do". Our daughter who went back to college after Thanksgiving responded, to one of them...."Yes, bring him back". The most inappropriate comments though came from ministers. "You have other children" one said. "Yes, but we are grieving the one we lost" I responded. One minister in my travels told me that Satan had taken our son, not God, because God couldn't possibly have needed him because we need God, he doesn't need us for anything. I told him that if Satan had taken Daniel then there were a myriad of ways that he could have done so, violently, horribly, and with lasting damage to our family. Instead, Daniel was called in a rapid, quiet way without suffering, after an absolutely perfect day. I told him that as of yet, Daniel's autopsy is clean, and that Dan seems to have had a pretty near supernatural passing, which sounds an awful lot like God to me. How strange that a minister would not wish to support a family in their belief that God had called their child for some reason, just as He had given him to them, and that there is purpose for everything God does.
As horrible as this whole event is, we know that God gave us this unusual, loving and brilliant person twelve years ago as a wonderful gift. As deeply saddened as I am, I know that God can call him back at any time. He belongs to God and was only on glorious rental to me. As much as we know this, it still hurts to know that God called him. Was I not doing something God wished me to be doing for him ? Why would He call him so swiftly ?
Most people have been kind and most incredible in this time. Others have said things that were nonsensical if not potentially destructive. The best thing of all came from one of Daniel's friends who hugged me tight at the funeral. I had been doing really well, until he hugged me, and with that tears filled my eyes, and I told him that he hugged just like Daniel. He told me that if ever I needed to feel a Daniel hug, I should just find him. Until we lost Dan, I was not fully aware of how many people Daniel knew and talked to. He was a 12 year old homeschooled student, who talked to everyone from congressmen, former leutenant governors, and governors wives, to children, the elderly and homeless people. Our greatest pain is not just for us, but that Earth has lost a person who may have done great good here, had he been allowed to stay.
I also know from Corinthians I, that Love Never Ends. This is something I did not completely understand until we lost Daniel. Love not ending does not simply mean time. It also means distance. The love we share with Daniel did not disappear or even change form when he passed. It simply stretches to meet him all the way from a lowly Earth to Heaven where I know he feels it. I know that Daniel knows how very much we love him, just as I know how much he loves us. I feel his love and concern and I am grateful to God for sending this beautiful person to us, even for just twelve years. We love you Daniel, and we always will.

Friday, January 23, 2009

The Craziness That Follows


One moment your life is laundry, correcting test papers for your students at the college and for your homeschooling students at home, and doing dishes, and the next moment it becomes, autopsies, casket choices, clothing for a funeral,and burial versus cremation. People descend upon you and there are too many questions. A sudden death leaves a family incredulous. A funeral for Daniel ? How could that be, why he's never even BEEN to a funeral. How could he be gone ? He is healthy. He just saw the allergist. He runs everywhere ! How could this BE? Do we have life insurance ? For a CHILD ? My husband and I and our three children at home were in shock. I reminded all of them that when Daniel needed us, we had all been there doing something constructive. I did CPR and Dad aided, Stephanie called 911 and conveyed information and directions expertly and got the epinephrine injections we kept for anaphylactic emergencies here on the farm. Matt opened farm gates and remained available to direct the ambulance toward the house. Adam had just left with his new fiancee Lori to Christmas shop and returned immediately when called.
We were blessed that we were all there, all available, and all tried desperately to keep him with us. In the blur which follows, a funeral home asks questions and places notices in a newspaper. They file paperwork and begin the process of a death certificate. Then everyone you have ever known descends upon you from all parts of the country. This is good because you are not alone and this is bad because it interrupts your grieving and processing of your loss.
Daniel's funeral could not be a funeral. As a homeschooling student in a rural place, he knew people of many different ages. He would speak with people who were five, and people who were seventy-five. He was well regarded and known by many people in our rural county. Many young children were likely to come to the funeral, and it could not be a dark, dismal, frightening event that would color their views of funerals for the rest of their lives. So Daniel's funeral became a "Celebration of His Life". It was a remembrance of the very fine person he is, what we recall about him, how really scary bright he really is. (Once again, he exists, and this accounts for the present tense used here.) We spoke about things he liked and many of the funny things he said. We had large pictures of him everywhere courtesy of our very talented daughter who is a university student in art, who is quite the photographer and had taken many wonderful photographs over the years. Although we had a very wonderful minister, and our family contributed greatly to everything I said, I did the elegy, which was lengthy and had many people laughing out loud. I told about the time Daniel had lamented that the tooth fairy was "woefully inadequate" because she had failed to pick up his tooth for almost a week, and of course,he had forgotten to mention this to me. We told about how he had taught himself to read at three in order to use the computer the way he wanted,and play computer games. We spoke of how even though he was only 12, wished to attend Virginia Commonwealth University and take Kinetic Studies, only he wanted to do this now, and not at 18. We talked about how he gently and dutifully washed down our alpaca Isabelle, when she was dying of a brain tumor last summer, and we were awaiting the vet. He continually sprayed her underbelly with cool water to keep her comfortable following seizures, just as the vet had indicated we should. At the funeral, we presented Daniel with his highschool diploma signed by both me, and by Governor (Lawrence) Douglas Wilder, who had penned homeschooling law in Virginia in its infancy when he had been in our state's legislature. Daniel would have liked that very much. Then afterward, most of the funeral attendees went to Daniel's favorite Chinese restaurant.
In the first week that followed, it was almost as if he hadn't left. His coat and shoes were there, his chores weren't done, and his favorite foods were there. We felt him with us, and we thought that perhaps we might survive. We drew strength straight from God (because none of US had any really) and we waited to hear from the experts doing different parts of the autopsy. How had Daniel, a perfectly healthy twelve year old died ? My money was on an aneurysm. In all the years of being a nurse, I had never seen anyone collapse and die like that, without it having been an aneurysm.

What I Learned from Daniel

Daniel passed in late November, 2008



Daniel, as he was at nine, sitting on his desk before all the computer gear came.




In late November our beloved twelve year old son Daniel died suddenly. The day after a perfect Thanksgiving, he came into our bedroom, tried to con us into getting a cat, then walked into the hall bathroom and died. When we heard him fall, we ran to the bathroom, unlocked it with the pin key, and proceeded to do the best CPR of our lifetime, while our daughter called 911. Daniel had allergies, and so after a minute of CPR, we gave epinephrine, but he was not known to have had anything other that food allergies and asthma, and these were well controlled.
Despite our efforts, the efforts of the sheriff's deputies who were also paramedics, the efforts of our local squad and a university-based helicopter ICU, he never did respond and was pronounced dead later that morning at our farm. A day that began with the thoughts of where we would Christmas shop, by noon had descended into where we would have an autopsy done.    Daniel is our youngest of four children. Like many younger children, he drew much from his three older siblings, two of whom are nearly through college. Daniel was homeschooled, and was a shining example of how much ground can be covered when you combine committed parents with a bright child.  He excelled not only academically, but creatively as well. He created numerous animations and was well on his way to being either an animator or a humorist. His academic skills or creative talents aren't really the measure of an exceptional person though. He is exceptional because he is exceptionally evolved. He is able to read people, to understand their moods and perspectives, and he has true empathy for people and also for animals. He is amazingly articulate. You notice that I am using present tense here, which is quite deliberate. When Daniel passed, he went from energetic bubbling energy to simply gone from his warm body. Energy like that doesn't die, it simply transforms and exists elsewhere, and this is what we believe. Certainly, our love for him remains. We cannot hug him as we so frequently did, but our love reaches all the way from this lowly cold Earth all the way to Heaven where he resides now. This blog is the story of what Daniel taught us when he was with us in life, and what he is teaching us now through dreams, in this very difficult time. As long as Daniel and God cooperates, I will post what we are learning about love, loss, death, adaptation, and ultimately about life here on Earth when your heart now lives, in part, in Heaven. It is our intention to inspire and enlighten as we travel through an electronic memorial to Daniel. We will be as strong as he remembers us to be, as a tribute to him, and also to God who gave us twelve years with one of the most amazing and intelligent human beings we have ever known.


Studio Recorded Version


Performance Version