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".
You may remember that I placed a letter in your Christmas stocking last year, just 27 days after your passing. Last Christmas, we had gifts you'd helped to select and selected for us, and so it was very clear that you were with us for Christmas. This year has been lonely without you. It doesn't seem worth the preparation of Christmas if you're not here in the flesh to enjoy it with us. It helps to know that you look down each day and see what we are doing, and because of this, we try. We still have the tree and the decorations and all the music. We still delivered all the neighbor gifts (more this year) in memory of you. We still have your stocking up, and you are the angel on the star on the top of our tree....yes, a real one as you liked also.
Please know that we still bought you gifts. We will unwrap them tomorrow with the others. They are things you would have liked, that will be opened and placed in your room, and we will borrow them and remember you and all of the things you liked while you were here.
Please know we love you more now than we ever did. Each of us love you wider than the oceans and deeper than all the seas. Knowing we will see you again gives us strength in difficult times.
Mark is not doing well this evening. Our dear doggie is elderly and has had such serious health problems that I don't think he will see the New Year. I know if he passes, you and Dad will watch him as you do the other animals. I send Christmas wishes to Papa L, and to you.
Merry Christmas. I am so proud of you both.
Today I spent all day at the hospital. My eldest son Adam needed his impacted wisdom teeth extracted, and as a result of his Crohn's disease and cardiac history,(and for that matter, what happened to Dan) this necessitated an in-hospital, and in-OR surgery with the possibility of admission afterward, rather than the oral surgeon office procedures that my daughter and I had some time ago.
While he was in the OR and then in recovery for a lengthy period, I walked the mammoth hospital halls as I filled the pain med prescription his doctor had given me. This of course, was the hospital where Daniel's autopsy had taken place, and I walked right by those offices.
When I returned, Pegasus, the critical care helicopter and a large number of the staff were having a gathering. Although these were not all of the people who were there for Daniel's day, and for his passing, they remembered the case, from one year ago. They were very kind, and we recalled what had happened that day. They were anxious to hear how all of us were doing now. I now have a couple of Pegasus pins for Daniel's Pegasus cap which sits in his room.
How I wish, as we inch toward another Christmas, that something else had occurred that day. It would be so wonderful to have Daniel here with us, rather than in the Heavens.
By the way, Adam did well, and seems to be recovering slowly.
When Daniel was here on Earth, in his beautiful flesh suit, he was concerned about children who did not have permanent homes with their parents. He verbalized a number of times how difficult it must be for children to be in foster care. He was very appreciative that he lived with both of his parents and siblings, that we always had a roof over our heads, and that we had enough to eat and adequate clothing.
This difficult holiday season, please take a look at
http://www.projectcarecase.org/events.html
Although Daniel never knew of this particular charity whose mission is to provide suitcases and personal items to foster children, so that they no longer tote their belongings place to place in a giant Glad bag, he would be excited about the work they are doing. This program is run by Connie Bellows who spent many of her own younger years in foster care.
This holiday season, love your parents, love your children, love your pets, love your friends, and love your spouse. I will leave the order of all of that to you.
Yesterday was indeed the first anniversary of Daniel's passing. It was somehow anti-climactic. We live with your physical presence, and my Dad's, being gone from here each day, not just yesterday. This Fall has also been colder than last years at this time, and farther advanced in terms of the leaves being absent from the trees. I think I viscerally grieved much more about three weeks ago when the farm looked as it did the day the helicopter arrived to try to help.
We spent the day all at home, cleaning and getting ready for holidays (no decorations just yet). We are finishing up some projects, and so Adam and I spent some time in Lowe's.
People have been kind. This week, close friends sent a jewellry commemorative of Daniel's passing, which was lovely. We received cards from others, e-mails from others remembering him, and what the day meant. We also received a lovely phone call via cellular to my son from the minister who precided at Daniel's "Celebration of Life". He seemed more somber than I. I don't think people realize that I am together because I deal with this loss from Earth every moment of every day. I cry a bit, every day. I remember Daniel, things he said, things he did, every day, and there is much to remember.
Last night I did not sleep well. Daniel's cat, Tosh, snores. Between my allergy to Tosh, and Tosh's noisy breathing, I tossed and turned. I finally got up, checked e-mail, and went back to sleep around 5 am and had this dream.
I was back a year and a day ago, and Daniel was lying in the bathroom as he was, in one of the shirts I had bought him at the same time I bought him the one he died in, but it was clearly not the same shirt. Daniel was in a different position in the bathroom as I administered CPR. After about 5 minutes of CPR, he woke up, sat up and walked away.
I am ambidextrous and have always found it easy to place IVs and things in people from either side of the bed. However, I have wondered, if Daniel's position in the bathroom, where I administered CPR predominantly left hand down first, resulted in less effective CPR. In the dream last night, I was able to do it right handed predominantly, and it was easier for me. As Daniel walked away, I got the message, "Now you have the memory of having done CPR comfortably and successfully on me. I was gone, when you started. There were no changes you could have made that could have kept me with you, that day. I had torsade-de-pointes, and I could not come back to you. I had to go, but I will be with you always". He walked away barefoot with those beautiful feet I love so much.
This morning, other than the sneezing from having Dan's cat sleep next to us, I am feeling alright. After all, precious, direct and brilliant Daniel, has visited me.
So this morning, my beautiful youngest son, we come full circle. This was the day, in which, one year ago, you joyously came into our bedroom one morning, spoke to us with happiness and excitement, ate a few mouthfuls of cornflakes, and then passed away on entering the main bathroom.
We try very hard to understand that this began a life for you in Heaven, and sometimes we actually accept all of this, and other times, we only see the gaping hole your departure from our lives has meant.
If you are who rang the doorbell here at the farm in the middle of nowhere very early this morning, then I thank you. We are handling your loss as well as we can, and we hope that our trying to cope pleases God, and you as well. We love you very much, wider than the oceans and deeper than the seas.
In some ways God has been kind. You passed the day after Thanksgiving a year ago, after coming in and speaking to us about the Christmas shopping which was to take place that day, and about what a wonderful Thanksgiving we had. Since this year, this is the day after Thanksgiving, then in a sense, this is the day you departed for Heaven. However, since Thanksgiving shifts a little each year and is the last Thursday of the month, it isn't the date you left. (The date your left via calendar would be tomorrow) It's as if God has spread out your leaving over this week, so that there is no magical moment where we feel the departure so acutely that we may wish to find the thinnest point in the veil between us, and go with you.
It is however, the first "Black Friday" since your passing, and you did indeed depart on "Black Friday". To me of course, this commercialized demi-holiday will always be something terrible and sad. It's odd to see the television rejoicing in "Black Friday" when it's such a dark day for us, and in a sense, it never was a special day for us. It has always been a dangerous day to drive, and so we tended to avoid travel on this day, including shopping, although we had planned to shop on it last year.
Black Friday symbolizes to me the worst of the Christmas holiday. The commercialism, rush, shove, and most of all the loss in America of what Christmas is about. It is "goodwill toward men", and not "Come one, come all, lowest season prices".
Thankyou for the dream this week. This week, I had a dream with Daniel. He was about five in the dream and it was a present date, and we both knew that he was really much older, but we knew that he was appearing this way to give me a message. He was lying in the bed in the room in which his sister normally occupies. The room was sunny and filled with light. The window was open and unlike our home, there were orange and lemon trees and other fruits growing outside the window. One could reach out and pick fruit. There was also a trench like a creek nearby allowing water to flow to the fruit. I came to tuck in Daniel. When I pulled back the sheet, there were tons of little toys and child's playing cards, Pokemon etc. around him in the bed. I told him he could not sleep with all of these, and so I took the time to take them out, place them on a table in the room and cover him with the sheet, despite all the bright light. I told him I love him and he told me the same. As I went to leave, he told me," Don't be sad at Thanksgiving. Don't think that I left at Thanksgiving. Think of Easter, think resurrection. I started life in Heaven at Thanksgiving." With that, I smiled and turned and left the room. When I awoke, I did not feel sad. I felt grateful for the message and as if I had seen Daniel recently.
I send love to both Daniel and Papa L. Holiday wishes to you all.
In seven short days we will find ourselves sitting on the shocking day, one year ago, when you joyously came into our bedroom one morning, the day after Thanksgiving, asking about Christmas shopping, and excited about the Christmas season. Then, you ate a few cornflakes, walked into the bathroom, and passed to spirit. In some ways it feels like five years ago, as so many things have happened since then, and the world around us has changed so much. Obama had been elected, but was not president when you passed. Other times, it feels as if it was a month ago, with the hurt and smart so fresh and the loss so large.
It has been a help to know that my Dad, your Papa L., is with you and that the two of you have each other when you need one another. I also know that you are individuals and each of you have your own paths and your own work now that you are there.
Of course, I don't feel much like Thanksgiving and the hurt is still fresh, but not to celebrate the holidays we enjoyed when we were so fortunate to have both of you with us, does not honor you or God as we should. Somehow, we will have the Thanksgiving we would have had, had you and Papa L. been here with us. We will have the giant turkey, Grandma K's stuffing, carrots, potatoes, sweet potatoes, cauliflower, broccoli, with cheddar sauce, and cranberry sauce, and likely rolls and salad. I promise to look the other way if you put cheese on your broccoli, mashed potatoes AND your turkey. You and Papa L. may need to pull up a chair but there will be enough food and you will be so very welcome. When you have your holiday there, say hello to everyone else and all our animals for us. I will have the pumpkin pie, and apple also. This year, in honor of my Mom, I think we will have mince as well.
I am working toward a good Thanksgiving for your sibs and Dad and I, as well as you. We will be at home this year. As you well know, I love you deeper than the oceans and wider than the seas.
I don't drink just because it gives me terrible heartburn, but nonetheless a friend sent me this, and I thought it was worth posting here.
Tequila and Salt
This should probably be taped
to your bathroom mirror
where one could read it every day.
You may not realize it,
but it's 100% true.
1. There are at least two people in this world
that you would die for.
2.. At least 15 people in this world
love you in some way.
3. The only reason anyone would ever hate you
is because they want to
be just like you.
4. A smile from you can bring happiness to anyone,
even if they don't
like you.
5. Every night,
SOMEONE thinks about you
before they go to sleep.
6. You mean the world to someone.
7. You are special and unique.
8. Someone that you don't even know exists loves you.
9. When you make the biggest mistake ever,
something good comes from it.
10. When you think the world
has turned its back on you
take another look.
11. Always remember the compliments you received..
Forget about the rude remarks.
So...........
If you are a loving friend,
send this to everyone,
including the one that sent it to you.
If you get it back, then they really do love you.
And always remember...
when life hands you Lemons,
ask for Tequila and Salt and call me over!
Good friends are like stars.........
You don't always see them,
But you know they are always there.
"Whenever God Closes One Door He Always Opens Another, Even Though
Sometimes It's Hell in the Hallway"
I would rather have one rose and a kind word
from a friend while I'm here
than a whole truck load when I'm gone.
Happiness keeps You Sweet,
Trials keep You Strong,
Sorrows keep You Human,
Failures keeps You Humble,
Success keeps You Glowing,
But Only
God keeps You Going
Sometimes I feel guilty that
The mother who had only to look at you
To know you were getting a cold could not save you.
Sometimes I feel guilty that of all those I gave
witnessed CPR to, who continued to live, or went on
to expert ICU care, that of all those people, you
have been the only one I could not spare.
Sometimes I can't understand how you could have been so full of life, played soccer and eaten pie, only to cease to inhabit your beautiful suit the following day.
All the time, I cannot understand how the Mom who knew you so well could not feel our time drawing to a close.
Sometimes I wonder that if the autopsy showed no cause of death, if you are not dead at all. You watched Stargate, learned of ascension and just as the character Daniel did, went on to live as a being of light, before you return again.
Sometimes I think I should get you snowboots because yours are now long since outgrown.
Sometimes the pain is so great that it makes it hard for me to do what I must for your siblings, but I promise you, I shall.
My dear son.
Since you have passed I no longer live
Squarely in middle Earth ignoring the whispers
Of those who are dead.
I have moved to the edge of Earth as it borders
Heaven, where I am quiet, listening for whispers
Or laughs from you, or clues from your Grandpa as
To what to do with my retirement account.
Part of me wants to breach your door and follow,
Yet knowing how special you are, I know that you
Dwell in a special part, even for Heaven. I know
I cannot hope to join you without finishing my
work with your siblings, your Dad and your
Animals, here on Earth.
I hate that God had different tasks for us but
I love that we intersected here.
I hear you and Dad at 4 or 5 am when I am
sleeping. What a relief for you to tell me things
Without having to hear back from me too.
I love you both with an energy that transcends
Time, space, and the gate that God has placed
Between us. I know you are minding God, because
You always did. We love you.
My dear Daniel,
As you know from the tears and my heading for bed at 7:11 pm last evening, these days are hard ones. The morning temperatures are what they were when you passed to spirit, and we are very close to your having passed one year ago. I am not really any wiser or better about it than I was a couple of months ago. I miss you and Papa L. more than I can describe, and yet I must continue for you, Dad and everyone else to function, make sense of, and find joy in the life which remains. Most days I do this, and you would be proud, but some days, I am tired and melancholy.
As you know, we are almost finished with your "teen-age room" with the tall built in blonde bookcases, where all your things will go as a guest and remembrance room. The ceiling like a true sky (not a painted one) is taking a little more time, but it will be there ! You certainly did have a lot of things, toys, pictures, sporting equipment,books, dvds, computers, games, etc. and we tended to pack and put away rather than give away many of those things when you outgrew them.
I know you and Dad are here sometimes. I am not sure who dropped the jar of pickles from the top of the frij when I was on the other side of the room with my back to you. I am not sure who tossed the spiral bound notebooks at me while I was filing the paid bills today, but I know that you and Dad check on me. BTW, Thanks for the Amy Grant Christmas music you told me about in a dream. I had no idea she had such a body of work over such a long period of time. Thankyou. I DO like that song, and it plays over and over again in my head.
I love you both so much, and if God is agreeable, we can keep our connection alive always. I will keep an eye out for you both around the house.
Much love,
It is now October, and I am finding that as the world arrives at the place it was last year, before the most difficult year of my life began, that I have access to many more memories than I did just after Daniel passed. This time last year, Daniel and I were homeschooling, organizing the farm, readying for Thanksgiving, and I was planning to diminish my work schedule from part time to very little time at all. At about this date last year, I received a phone call that my Dad was very ill in another city, and for four days, until he died, I spent that time with him in a private glass room in an Intensive Care Unit of a major university hospital. When I did call home, and spoke to everyone including Daniel, I made sure he was feeling well. On one Saturday, before my father died, my husband brought all of the kids to see my father. Sadly, my father had deteriorated between the morning when he knew the kids were coming and the afternoon when they actually arrived. I remember Daniel being very upset at seeing my Dad, who was clearly dying. I remember holding Daniel, outside the ICU room, who was crying and telling him how much I love him and that we needed to let my Dad go. I told him that Dad could hear him in the room and would still be grateful for this visit. Daniel was well, other than being understandably emotionally upset. After my Dad passed and we were at home, I came down with a flu, I believe I caught at the hospital, and it quickly spread through the house. I was pretty sick for a bit more than a week, as was everyone else. Daniel appeared to have it more mildly than everyone else, and it appeared to be affecting him mildly and as a respiratory illness. This was early November, and I remember voting, but thinking I was not really well enough to be there. In the flurry of completing some of the estate matters for my Dad and also completing the college semester and getting the grades in, I did not take Daniel to the doctor for the flu. He seemed well, in fact better than the rest of us, but I do remember several things now, that I did not recall then. I remember that before Daniel died on the day after Thanksgiving, that he was more tired than usual in the preceding couple of weeks. I attributed this to having lost his beloved grandfather and a flu which appeared to be resolving nicely. He did complain twice of a morning headache, which responded to Claritin (Loratadine, an antihistamine which does not cross the blood brain barrier), both times. He did complain of blurred vision late on Thanksgiving evening, after a full day of celebrating with us and my son Adam's fiancees family nearby. He had watched two videos, "Hancock" and "The Incredibles", so I thought a little blurred vision meant he was tired. I remember that in the month preceding his passing, Daniel did ask about a pins and needle sensation in his foot and leg, which I attributed to too much time at the computer that day. He also once complained of nausea, once. At no time did Daniel complain of anything significant enough to warrant immediate medical care, or we would have dropped everything and heading for UVA Medical Center immediately.
In the long and sorrowful year which has passed, we have never really received a definitive answer as to what happened to Daniel. The final autopsy states only "Probable cardiac arrhythmia due to unknown etiology". The experts think that he may have had something called "Long QT syndrome" but there is no proof, no EKG, and no abnormal accessory pathways detected on autopsy. He does not have any of the known genetic markers for cardiac conduction disorders.
One of the things I have done this year is to read as much as possible as to what could have taken Daniel. How can I work toward educating the world about what took Daniel, and work toward good, if I can't ascertain what happened ? In order to do this, I have read or purchased many books including but not limited to:
The Long QT Syndrome (Peter J. Schwartz MD)
Sudden Death in Infancy Childhood and Adolescence
(Byard and Cohle)
The Mayo Clinic's Cardiology Textbook
I have read tons of journal articles on everything from viral syndromes, to Brugada syndrome to Reyes Syndrome. I have even communicated with Dr. Brugada in Barcelona, for whom the syndrome is named. I am sorry to say that I never had any idea that so many children die suddenly and without clear cause.
(Please see:
www.sudc.org
devoted to sudden unexplained death in childhood.)
My final theory which will likely never be proven,as I am a registered nurse and college instructor, not a pathologist, is that Daniel died of a concurrent respiratory and cardiac arrest as a result of Guillain-Barre syndrome. I believe that he developed a mild virus around the time that my father died, and that he developed an autoimmune response to that virus, as is the poorly understood result of GBS. His only symptoms were mild, and included transient pins and needles sensations in his legs once or twice, some tiredness, a little bit of nausea, and some blurred vision. He was at no time febrile. The clue is that when I began CPR on Daniel, his face was flushed, which I now read is a sign and symptom of Guillain-Barre. Few children develop GBS and when they do, they may not be diagnosed, as their symptoms differ somewhat from the syndrome as it afflicts adults. Daniel does come from a family with a variety of autoimmune disorders from autoimmune juvenile diabetes, to Crohn's and Hashimoto's thyroiditis.
The only thing I can convey to you is that if a person, any person, child or adult, has weakness in arms or legs following a flu, that they should receive a neuro exam to rule out Guillain Barre. Most patients survive GBS once it is diagnosed, although some do spend some time in ICU and on ventilators. It is possible that even if I had taken Daniel to a physician on or around Thanksgiving, that his neuro checks would not have been out enough to hospitalize him and support him through the apparent event that ultimately took his life.
In remembering more about this time last year, I remember how beautiful Daniel is, and how happy he was at that time. He was full of hope for the future and joy despite the fact that he missed his Papa L. I am not sure what I could have done had I recognized even the possibility of Guillain-Barre. I would have taken him to an ER, but what happened there afterward would have been beyond my control. It may have saved his life, and it may not have. Just as I did not understand this to be the threat it became, the ER doctors may not either, until it became a circumstance of sudden death.
I remain grateful that my dear boy will have no recollections of an ER or an ICU, or the helicopter which came to the farm in a futile attempt to save him.
Daniel, I love you so. I think about you all the time. I remember your hug and all our wonderful conversations. Your beautiful spirit is welcome here with us anytime.
Some months before Daniel's passing, I recall being very upset when I heard that Christian music artist Steven Curtis Chapman had just lost a young daughter in a terrible accident. Chapman, who as a songwright, describes clearly his love for his children and his wife, and chronicles the moments of their growth and especially the moments as the elder children prepare to leave the nest. He and his wife had adopted two young girls through international adoption, and judging from the video he posted of he and Maria washing dishes together, they are an extremely close family. On the day of a family gathering, young Maria ran out to the driveway to be accidentally hit by a car driven by one of the other children. Maria died at a major trauma center shortly thereafter. I remember praying for their family having no inkling that such a loss would befall us as well.....and soon.
If you have a chance to listen to Steven Curtis Chapman's new song, please do. I have placed the lyrics below.
Heaven Is The Face by Steven Curtis Chapman
Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles
Heaven is the place
Where she calls my name
Says, “daddy please come play with me for awhile”
God, I know, it’s all of this and so much more
But God, You know, that this is what I’m aching for God,
You know, I just can’t see beyond the door
So right now Heaven is the sound of her breathing deep
Lying on my chest, falling fast asleep while I sing
And Heaven is the weight of her in my arms
Being there to keep her safe from harm while she dreams
And God, I know, it’s all of this and so much more
But God, You know, that this is what I’m longing for God,
You know, I just can’t see beyond the door
But in my mind’s eye I can see a place
Where Your glory fills every empty space
All the cancer is gone
Every mouth is fed
And there’s no one left in the orphans’ bed
Every lonely heart finds their one true love
And there’s no more goodbye
And no more not enough
And there’s no more enemy (no more)
Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone
Heaven is the place where she takes my hand
And leads me to You
And we both run into Your arms
Oh God, I know, it’s so much more than I can dream
It’s far beyond anything I can conceive
So God, You know, I’m trusting You until I see Heaven in the face of my little girl
_________________
This week, as we come closer to the time of year in which we lost Daniel, I am falling again. I am finding it harder to remember why I must continue, why I must make Daniel and my father proud, and what there is left to achieve, with the other children grown.
Yesterday, the hospital health system that had sent the helicopter for Daniel, and had ultimately been entrusted with performing an autopsy which took eight months, had a Memorial Service for the children who had passed to spirit within the last several years. In concept, this is a lovely idea. Particularly with the economy, many families cannot afford funerals or ceremonies of remembrance and so for many of them, this may be all they have. Families and their friends are welcomed as long as one RSVPs in advance. There is a room where there are tables of remembrance where one can either set up a picture of your child, or some brought the child's toys, or a computer with a power point presentation of their child's life and times. There is childcare, and a fairly sanitized service bordering on the non-religious. On entering, families are given carnations of many colors, and as their child's name is called, they come forward and place the flower into a wooden "Tree of Life" with holes drilled for the carnations to rest. One can also ask for more flowers in order to remember others who have passed recently.
It was an interesting gathering. My husband and I attended along with all three of our children who remain on Earth, the two in college and the one who had graduated. The gathering was held in the medical center's college of nursing building which is experiencing renovation. Parking was underneath the building, and we arrived to a table outside the elevator with kleenex packages, programs, forget-me-not seeds, poems on cards, and a booklet on local Grief and Loss resources. It was interesting to learn that there IS a branch of Compassionate Friends in our area, as I had asked this, and was told no, about ten months ago. We went and set up Daniel's framed photograph.
It was interesting to me that there was a bevy of pregnant women, almost due, who were there to remember a premature infant they had lost in the last eighteen months. There were lots of families with babies who were there to remember an older child. You could pick out who the parents, aunts, uncles, friends, and grandparents were. Mothers had tears and were barely holding it together. Fathers looked as if they had been punched in the gut. Aunts were concerned and supportive. Grandparents were as supportive of their families as they knew how to be, and siblings were simply bewildered, wandering from table to table, realizing that their grief and pain, was a grief shared with so many other children and families. No one there was doing particularly well, and families that did not already know one another, avoided eye contact as well as avoided talking to one another.
It is a difficult event to structure in the best of circumstances, and a tough audience to be sure. As I waited in a line at the two stall ladies room two ladies using walkers lamented the lack of toilet facilities for a crowd this size. The pregnant women clenched their legs in line hoping they could make it to their turn to use the toilet.
As a result of the bathroom line,we were a little late to the service which was one the other side of the long hall, and was unmarked. There were poems read by some of the families which we could not hear at the back of the room. About that time I realized that Daniel's name in the program, had been listed as Eric James with our last name.(??!??) In addition, they cited our favorite poem on this subject as author unknown, when Edgar A Guest is the well known author of "To all Parents" which they had mislabelled as "God's Loan". One presumed boys grandparent said to another, "I hope our boy got better care than the set up of this little fiasco." I took this to mean that there were other errors in the program, and that the toilet issue upset her, as I had seen her there with a walker a few minutes earlier.
In point of fact, no medical center is required to do this. It was staffed by volunteers and is tough work. I recognized the names of some of the children as being a sibling group of three or four who died in a housefire earlier in the year. It is unlikely that any institution will please the throngs of devastated families who attended. I noticed that a large number of children did not have their families in attendance. My husband and I placed flowers for both Daniel and my Dad, and I kissed them before placing them in the tree.
I found the ceremony very difficult. I realized that I am not yet ready to return to church simply because music reduces me to big sobs. The man who played the hammered dulcimer yesterday as a last minute addition was very welcome, and the music reminded me of Christmases, we would never have with Daniel here on Earth. I also appreciated the young physicians, "The Arrhythmics" who sang two numbers a capella, although Daniel's passing being due to a probable arrhythmia made their name unfortunate for me. I consoled myself throughout the sweet music by calculating how much all these young doctors could bill for their ten minutes of time, in about six years collectively.
It is enough for me to know that our lives are completely changed and torn without seeing the multitudes of so many who lost their beloved children in a variety of terrible ways. A mother who has lost a child can pick out others who have, a point I learned recently at a local mall.
After the ceremony, there was a rather nice catered reception. If one is ever in my area, you might want to go to Brix Cafe who provided the unusual Italian reception fare. I spoke to only one family. A young African American boy stood mesmerized by Daniel's picture and told his mother that he thought he knew him. I spoke to them and learned that they had recently lost their five year old daughter to an asthma attack. All of them were quite devastated and the wound was quite fresh. I spoke to them for a little while and told them that she would find ways to tell them that she is alright. Her mother confided that her five year old used the microwave all the time at home, and that today, with no one nearby and nothing in it, the microwave had turned on and run for about 15 seconds by itself. She believed it was her daughters way of saying that she still is nearby at times.
I spoke briefly to a female chaplain who attended, who seemed surprized when I related Matthew's dream. It seems strange to me to work in the field of grief and sorrow and not know many people who have found hope in small ways, either through dreams or in isolated actions of ones microwave.
Had Daniel been there, he would have asked two pressing questions. One, can we take some of the left over Panini home ? and Two, why did you subject yourself to this ? Seeing so many suffering families will not help you. You are too empathic. Help one at a time as God places them before you. He might be right.
We are nearing the season in which Daniel (and my Dad) passed to spirit almost one year year ago. The major medical center who sent the helicopter to help Daniel has invited our family to a memorial service where he, and other children who passed this year will be remembered again. It's a sweet sentiment, as if any of us have forgotten the child who is no longer breathing under our rooves, for even a moment.
It is in the spirit of this remembrance that I have thought I might list a few of Daniel's favorite things. As I list I am taken by how full a life he really had in 12 1/2 short years.
Favorites
I will mix both past and present tense here, as appropriate, because some things
are likely to have changed, now that he has been freed from the flesh suit we inhabit, and some things are likely still to be true where he is now.
1. Days in which the entire family is home.
2. Our dogs Jake, Susan, Sally, Spook, Alvin, Angus, Roisin (pronounced Ro-sheen),
Jared, Benjamin, Mark, Albert, and Daisy. Many of them were adopted as older dogs and many have passed during Daniel's lifetime.
3. Our rabbits, chickens and our ducks on the farm, who were too numerous to mention by name, but who are very special to him.
4. Daniel loves computers, particularly laptops. He likes wifi, and a variety of gaming software.
5. He likes books and had a wide variety of reading materials.
6 Since about three, he has liked at "Dairy Queen" styled vanilla cone with "a chocolate forcefield".
7. He loves a Thanksgiving dinner with all the trimmings but without sugar because his sister is diabetic. He loves pumpkin pie with whipped cream.
8. Daniel loves a particular cat named MacIntosh, who attended his "Celebration of Life" just after his passing.
9. Daniel loves going for a walk on the farm with his sister. He could walk for miles.
10, He likes outings with his family, particularly with one or two of us at a time.
11.He liked to pray before a meal, even at McDonalds.
12. He believed in modesty, for him, and for everyone else, including young women in midriff tops !
13. He loved creating animations and power point presentations on his computer.
He was exceedingly gifted in the creation and formulation of animations.
Even at 12 1/2, he was planning to attend Virginia Commonwealth Universities
"Kinetic Studies" department which is part of their highly rated art program.
He intended to attend college early.
14. He enjoyed homeschooling and was exceeedingly bright and accomplished academically.
15. He enjoys political discussion with Congressmen. He gave Eric Cantor something to think about when Daniel opposed 70 billion dollars to save what Daniel considered "poorly run banking institutions which deserve to fail" in September 2008.
16. Daniel loved homeschooling social gatherings such as barbecues, Field Days, and Harvest Festivals, even if he were the youngest there.
17. Daniel liked softtoys which resembled real animals. (Yes, I listed it in the past tense sweetie)
18. He looked forward to college and life afterward.
19. He loves God and had an uncanny acceptance of whatever God would bring to him.
20, He loved comfortable shoes, and an occasional suit, and looked fantastic in a suit with a tie.
21. He loved the Celtic Festival.
22. He loved to go to Panera with his laptop, have the bacon turkey bravo sandwich with the "You Pick Two" special, along with the brocolli and cheddar soup.
23. Daniel loved to create amusing songs to tunes that were familiar to us all. He had us in stitches a lot of the time. He had a tremendous drole sense of humor.
24. His favorite television programs included "A Bit of Fry and Laurie", the four season British comedy series which showcased the talents of Stephen Fry and Hugh Laurie. He liked Tia Carrere and Relic Hunter series. He enjoyed Airwolf. He also liked "Monarch of the Glen" the BBC longrunning series about a Scottish family who lived in a castle in a fictional place called Glenbogle. (In real life it was filmed in Lagganmore and environs in Inverness Shire, in the Scottish Highlands) He also considered "Family Guy" and "Southpark" to be both vulgar but in his words, "superior satire".
25. He liked soda, particularly name brand cola. This was a longstanding concern as we thought this was not good for his teeth, so we limited it as we could.
26. He liked playing volleyball with his siblings, soccer and foxtail (ball with a tail that glides) on special occasions. He liked to play ball with our Golden Retriever Benjamin.
27. He loved our annual Easter Egg Hunt in the front yard, especially after I stopped using wrapped candy in plastic eggs and started using quarters after the older kids went to college.
28. He loves my father who passed before him. I remember the last visit
with Daniel to the ICU before my Dad passed. I remember how upset Dan was
and how he hugged me. Now, they are free to spend as much time as they can
together.
29. Dan loved homemade oatmeal raisin cookies, particularly the flourless recipe.
30. Daniel liked our casseroles which had whole grain pasta, chicken, cheese, and chopped chives, carrots, and herbs grown in our garden.
31. He liked chilled water with ice from home.
32. He liked running and sliding on the oak floors in stocking feet.
Without Daniel,(and of course my Dad too) I continue in this life with eyes and ears, but with no arms. Yes, you can live without arms, but not half as well as you could have with them. Our ministers tell us, "You will have your arms again in Heaven". Yes, well, without Daniel how do I eat, brush my hair, write, cook, paint, draw, cuddle, and climb ?" Not particularly well I am afraid.
Sometimes in the early hours of the morning, when I am deep in REM sleep, I believe that my Dad, or Daniel, and sometimes both of them check on me, and talk to me. Sometimes I am in such a deep sleep that I can only lie there as if deep in anesthesia while they tell me something. (They probably wish I was quieter and a bit more anesthetized when they were here on Earth.) Other times, I am able to formulate a question, sometimes accurately answered by them, and sometimes answered later. I did ask my Dad where the bolt to his rifle was kept, as it wasn't with the rifle, and he did not seem to remember. I am happy to say that this week, it was located, and now is safe and sound.
You may think that I am a sad and pathetic mother who could not manage the simaltaneous passing of her father and her beloved youngest son, or that my own psyche creates or interprets their communications and manifestations. You may think that I was a closet psychic who ignored information given to me, but when my father and my son died, I finally listened to "the ancestors" who had always spoken to me. You might think that our loving Heavenly Father decided to allow limited and loving communication following their passings, to ensure that I complete the tasks assigned to me on Earth and that I remain on the correct path, before I join them someday. I don't really mind which you choose. I post some of these musings because I think it is important to truthfully relate what I know, which is that we do not die. Our souls and consciousness live on. I seek only to validate the similar experiences of others, and then, only if you wish me to.
This week the communications are as follows:
"In Heaven, No Kindness on Earth Has Ever Been Forgotten"
(Dad and Daniel showed this to me on a heavenly bumper sticker)
And
The answer to my question, "What is Heaven Like ?"
"This week it is a lot like Nova Scotia in August" because this is where Dad
and Dan are presently visiting. Coincidentally, this was the home of my father's maternal great grandparents.
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 ?
Daniel on a particular Halloween as Charlie Chaplin
For All Parents ~ by Edgar A. Guest
I'll lend you for a little time,
A child of mine he said.
For you to love there as he lives
And mourn when he is dead.
It may be six or seven years,
Or twenty two or three.
But will you , 'till I call him back,
Take care of him for me?
He'll bring his charms to gladden you,
And shall his stay be brief.
You'll have his lovely memories,
As solace for your grief.
I cannot promise he will stay,
Since all from Earth return.
But there are lessons taught down there,
I want this child to learn.
I've searched the wide world over,
In my search for teachers true.
And from the throngs that crowd life's lanes,
I have selected you.
Now will you give him all your love,
Nor think the labor vain.
Nor hate me when I come to call
To take him back again?
I fancied that I heard them say,
Dear Lord, thy will be done.
For all the joy thy child shall bring,
The risk of grief we'll run.
We'll shelter him with tenderness,
We'll love him while we may
And for the happiness we've known
Forever grateful stay.
But shall the angels call for him
Much sooner than we've planned,
We'll brave the bitter grief that comes
and try to understand.
Many years ago, when Daniel was small, we received a Russian child as a placement we hoped to adopt. He had medical problems which we had addressed here in the US. However there were serious difficulties. In the interest of providing this child with the help he then needed, we allowed him to be placed with a family who had expertise in his specific problems, and with no other children younger than he. This was also the choice and directive of the agency supervising the placement of this child with us. You were never unwanted anywhere. Everyone concerned was simply trying to best meet your needs. Today is his birthday. Although he is unlikely to read this post, I would like to say that we have always grieved his departure even though he was not particularly happy with us, or at all bonded to us. We have always cared and always thought of him. He has always been in our prayers. Happy, Happy Birthday. You may not have become our son, but you will always be a family member, and you brought Russian language and culture to us, and in many ways it has never departed. With best wishes across the miles. Bolshoe spasiba.
Since Daniel passed I have been trying to listen to the things that we sense sometimes, you know what I mean. The second year our daughter was driving, she was on her way home from work and was about five minutes late. I told my husband that Stephanie had had an accident and that he needed to retrace her way home from work. Of course, he thought I was completely mad. We were arguing about the necessity of doing this when Stephanie drove up in our minivan with the engine overheating, the result of a bad front end accident. The minivan was totalled when she was driving up a dark country road and hit what must have been a large buck, but she said it looked more like a moose than anything else ! The animal left the scene, but the minivan was badly damaged. It took a day or two to realize that Stephanie had two fractured ribs. These took a long time to heal as it could not be splinted as would normally be done, because she has an insulin pump which uses that area. I KNEW that Stephanie had been frightened and was hurt, and I knew it involved the car. I did not know much else. Strangely, I did not have effective enough intuitive ability when Daniel died, or I would have surely avoided the outcome. Anyway, on Friday I took Stephanie to the internist and afterward for a little shopping. We were tired and I really should have gone home, but I noticed a sign up at a very very good antiques dealer which said, "Retirement Sale. Owner Retiring....Best Deals". Having inherited antiques from aunts, great aunts, in laws and others, I need nothing. I am simply the family antiquities keeper, the steward of family artifacts until our children establish homes, and then they can have what they like. I love beautiful things, yet I am not materialistic. Does this make sense to you ? I knew this was a very good shop, but my feet hurt and I didn't want to go. A voice pushed me. You should go, said the idomatic and non-descript push. Stephanie and I went and it was quite something. Many of the antiques were purchased in England, and are unusual items for this area. Stephanie looked for an extended period whereas my aching feet led me to sit near the owner after a time. She began to tell me about her many years in the antique business, and then, all the things she is planning as soon as she retires. She had the lovely aura of someone who doesn't care if you think that something she is saying is bizarre in any way. Without knowing our own history, she told of being guided by a beloved aunt in her purchases, in her journeys to England, and ultimately in her trips to Maine to the aunt's home which she inherited following her dear aunt's passing. I think she expected me to be surprized or to question, yet I accepted this easily. After Stephanie finished talking to a woman she met in there, we began to get ready to leave. The antique shop owner said, "You know that it was not an accident that you came here today. No one ever dies. They never cease to be. Why I can't WAIT to go myself !" she said with the same glee a child might when discussing a vacation ! The woman was not elderly. She was a cultured attractive blonde woman with a bright smile. The antiques were not the best feature in the antique shop that day, the people were.
As I may have indicated, I don't "hear from" Daniel too often these days. He does enjoy riding in the front seat on occasion when I drive my new car (that he incidentally picked), as it is such a departure from the cars I drove when he was here.) Our state does not allow people under 16 to ride in the front seat, and so now, Daniel can ride there whenever he wants, and sometimes, I am sure he does. Today, I ran out of printer ink and had to make a mad dash to a major center to prepare some paperwork. It's a long trip through the countryside to the city. As I drove, I was aware that he was next to me enjoying the moon roof, and the beautiful day. We began our exchange. "I don't understand" I conveyed. "Ministers are supposed to help families deal with loss and the truth that our family members never die", yet Susan's minister tried to convey that the goings on of this Earth are of no interest to her son who has just passed. Why do they DO that ? Some of the most hateful and destructive things said to us were said by a few ministers. (Fortunately not our own) Daniel conveyed that ministers are trained by man and not God, and although they aspire to serve God, they sometimes fall short, just as we do. He said that it is taboo to pass along how wonderful things are in Heaven, because we do not wish people to stop working to care for themselves and their loved ones, and pass before they are intended, so we are all very careful about what we convey about Heaven. He thinks that some churches may pass this attitude in order to encourage those who remain here to invest in and live the remainder of their lives. I hope I can explain the next thing he passed to me clearly. He conveyed that although there is much to see, do and enjoy, and even meaningful work for us in Heaven, that we do not forget the most important elements of our lives. We still love and have concern for those we cared for when we were on Earth. We never outgrow each other ! Our love is more perfect, not less so. We just have perspective in that the trials we have here, do end and we are later reunited and happy. I told him that I would pass this along to you as best I could.
