Sailing Ship at Dusk

Dear Daniel and Dad,

It's almost two years since each of you passed, one by one. One of you expectedly, with time to say goodbye and confirm that I will see you again and that you rise to God, and one of you passed without any obvious warning. I would like to say that I am doing fine and that I have done well with the tasks you knowingly, and unknowingly left for me, but that would be a lie. Many times I know you are proud of me and that I do well caring for and guiding the people you love, and caring for the animals who remain here. Other times, particularly when I am ill, I am lost. Dad, I don't do as well as you in keeping up with all the secret charitable things you did while here. I also haven't kept up with your friends as well as I had hoped to. I try, but I fall short. Daniel, I try to move forward, care for James, and of course, support the other kids, your biological siblings, in their lives, challenges and adjustments, but I don't always know what to say, or what to do. I work hard on the animals especially, because I know how much you love them. I do my best but I have been overwhelmed with the Lyme disease, and I have delegated many things this week. Sometimes I feel that you are each on a ship together which slowly drifts farther and farther from me while I am stuck in a shanty seedy port city. I miss seeing you each in dreams and I don't know whether this is because I am sick and can't hold onto REM sleep when I am most likely to hear from you, or whether you have now drifted or are visiting a place where I can't hear you, at least not as well. I love you both so much. I love you both wider than the oceans and deeper than the seas.









I have included the song above, The Physician, a Cole Porter song sung by Gertrude Lawrence,because before my father died,in his private room in the ICU, I sang this softly to him. The song always had special meaning to him,being a fan of Gertride Lawrence, Noel Coward and Cole Porter. It will now always have a special meaning to me as well.

Lyme Disease and Other Insults and Annoyances

It's been a rough couple of weeks. I have had some trouble with my stamina of late. I have had trouble completing my normal tasks and I have not been sure why. A week ago, I woke up with a shoulder so sore and painful that I could not brush my own hair. Although I have had annual visits, I haven't had a sick visit at my internist's office in the four years in which we have been associated, and strangely, I had trouble getting in to see her. Apparently, healthcare professional or not, unless I am experiencing cardiac arrest, an appointment to actually SEE her is a challenge. I suspect other health care workers are moved to "the back of the bus". Later in the day, my left shoulder was sufficiently sore enough that I could barely drive with either arm. A day later, my left knee was too painful to walk on. To make what is now a repressed memory shorter, I paged my endocrinologist, who is now treating me for Lyme Disease. It's good to know that her expertise does not end with thyroid and other endocrine disorders. Lyme Disease is a funny thing. We are continually told when we ask annually for a Lyme titer that it's rare disease, but every realtor I know locally who walks out country property has had it. Most of my friends have had it, and one of them saw an infection control specialist because she had Stage III. My eldest son's fiancee has had it. Even Canadian National Health in Nova Scotia is having to treat children for it, as it apparently does occur there also. There are also frequent false negatives during testing and many people believe that Lyme Disease is undiagnosed in many people and generally underdiagnosed in the population at large. The concerning thing is that although it can be eradicated in many people, one keeps the organ damage one received if a case remains undiagnosed for an extended period. It can be a tough disorder to diagnose based on symptomatology, because the symptoms can be quite varied between individuals.
Consequently, I feel absolutely awful. I felt worse than I can remember feeling in the 24-48 hours after starting the Doxycycline. I can't think straight and the kids are joking about Mom's two day short term memory loss. It's times like these that I feel a tinge of relief that Daniel is spared from experiencing this particular joy of living. I am also glad my Dad does not have to experience this either. When my endocrinologist asked me about tick bites, I had to laugh. People who live on Virginia forested farms are more likely to get a tick bite in the Spring and Fall,than not to, even when one uses DEET. I never did see a bullseye marking, around a bite, but my pale British/Scottish skin always reacts strongly to any tickbite, so once again, I am atypical. I don't understand how I could have Lyme Disease. I eat so many lemons in tea and even in cola, you'd think they would block Lyme. Did I mention I think I have a short term memory loss, and quite possibly reading my ramblings, some additional neurodeficits as well ?

Alluvial gold

Just when I think life is busy and normal and that we have defined and are living the new normal, something odd happens here, leaving me, or us to ponder something new.
My husband and I used my new car this week only to find minute specks on it, which scrape off with a fingernail but are too adherent and too numerous to remove. We looked over our other cars,all kept deep in our large farm, and found these fine specks over them as well. They are most noticeable on my new car. We took a magnifying glass to look at them, and at first thought they were gold leaf paint spray, uniformly and perfectly distributed all over the car. It almost looks as if this is the intended finish of the car, except that it is also over the plastic and the glass portions of it as well. When we examined the car's finish a magnifying glass to look at this more closely and found these to be little specks of gold reflecting back at us. We have no explanation for this. We live on a large farm and no one here owns a paint sprayer or anything like this. We have had some winds following Hurricane Earl, and even some dirt and wind "sandblasting" around the farm, but this is truly peculiar.
I took my new car to two detailers and two body shops. The car had a vigorous hand washing and polishing. The first one is unable to remove the gold using a power hand wash and hand rub. The body shop is reluctant to buff it because they fear removing the clear coat on the car. They all just shake their heads. The last one said that this is not gold paint, but alluvial gold, actual gold dust which has somehow settled and stuck from the atmosphere and either adhered to the car as the result of the polish we had last used or adhered to the clearcoat layer over the original paint.
Could gold dust from the farm have picked up in the wind and deposited onto the original paint, clearcoat or even the polish of my new car ? Could Daniel or Dad have done this ? Is this something they could do ?   This is indeed the site of an old goldmine from the 1880s.  Could the winds have stirred up the minute gold particles ?   So far, the detailers and car bodyshops said we should remove it from the windows and the rubber, but leave the body alone. They have all never heard of anything like this ever happening.







UPDATE: June, 2013

 The alluvial gold specks which apparently bound with the clearcoat of my car remain there. I have come to accept it, no matter how curious it is.

I'll Pray for You

Daniel enjoyed a good laugh and particularly good satire, particularly in songs. He also enjoyed the irreverent in terms of songs from time to time. I heard a song this week and looked up the video, and I think he would have found this amusing.
As much as we all love God, and our fellow man,I am sure we have all had moments where we have felt even just for a moment, like the man in the video.

Hummingbirds

Today my husband and I attended the funeral of one of our neighbors. She is a fine woman who raised three sons, one of whom became a minister. She is not too much older than I, so she must have started having children fairly young.. This is a reminder that all of our days could be shorter than we had planned.

This is a poem they used in the funeral
service.

"I Will Always Be Here"

Family,please don't mourn for me
I am still here, though you don't see
I am right by your side each night and day
And within your heart I long to stay

My body is gone, but I am always near
I'm everything you feel, see or hear
My spirit is free but I will never depart
As long as you keep me alive in your heart

I will never wander out of your sight
I am the brightest star on a summer night
I will never be beyond your reach
I am the warm moist sand when your at the beach

I am the colorful leaves when Autumn's around
And the pure white snow that blankets the ground
I am the beautiful flowers of which you're so fond
The clear cool water in a quiet pond

I'm the first bright blossom you will see in the Spring
The first warm raindrop that April will bring
I am the first ray of light when the sun starts to
shine
And you will see that the face in the moon is mine

When you start thinking there's no one to love you
You can talk to me through the Lord above you
I will whisper my answer through the leaves on the
trees
And you will feel my presence in the soft summer breeze

I am the hot salty tears that flow when you weep
And the beautiful dreams thatcome while you sleep
I am the smile you see on a baby's face
Just look for me, family, I am every place

Author of Poem is unknown to me.



Below is a short film made by Daniel's older brother Adam, the sculptor, who rescues a hummingbird with heat exhaustion here on the farm. This is the farm that Daniel enjoyed so much. The female hummingbird survived and is still here on the farm, preparing to migrate South with her own family.

Love The Earth, Hummingbirds from Veraseri on Vimeo.

A Poem

I promise I won't cry forever
But I need to just today.
I promise I will remember
How to live and how to play.

I promise that I'll dry my tears
When the heartache goes away.
I promise that it won't take years
But I need another day.

I promise that I'll live my life
As you would want me to.
I promise when I'm facing strife
I'll face it straight and true.

I promise I will endeavor
To do the best I can each day.
I promise I won't cry forever
But I need to just today.


Author of poem unknown to me.

Weeks of Birthdays

August is an exceptionally busy month here normally, but especially this year. In August, James, Adam and I all have birthdays in fairly rapid succession. In addition, everyone who still attends college or school is busy getting ready for an end of the month start.
Sometimes I can't believe that we've having all these birthdays without Daniel being here, but then other times,I think he is.

News from Far Away

Today I spoke with researchers at the Mayo Clinic. They have had Daniel's blood for about a year, and are working on it now. They are doing complex and expensive testing only possible in a few places in the world. Daniel's blood is being DNA mapped looking for specific known markers which might indicate that he had a version of Long QT Syndrome. There are many different types of this particular syndrome. From the history,(specifically of his passing, and of the failure of immediate CPR to revive him,) they believe the most likely type was Long QT Type 3, which can do exactly what it appears to have done in Daniel, which is to cause sudden death resistant to immediate CPR, many times without any prodrome or advance symptoms or history.

http://www.qtsyndrome.ch/faq.html


They anticipate some type of an answer as to whether Daniel carried clear genetic markers for Long QT syndrome, particularly type 3, within the next several months. This would be important not only because we would know what happened, but also because it impacts the conduction cardiological management of his siblings, and ultimately our entire line.
It appears that people with Long QT markers may have a normal or only slightly unusual EKG marked by a slight deviation in electrical axis most of the time, but then under stress, joy, excitement, physical activity, OTC medications, or fluid and electrolyte imbalance, may trip into an unusual rhythm which is not correctable, and ultimately is incompatible with life.
It would be important to make this diagnosis because despite the borderline EKGs of siblings, they would be managed differently and perhaps more aggressively throughout life, should one of the known marker genes be located.
There is also the possibility that Daniel did pass as the result of a disturbance in heart rhythm, but that he has a genetic marker which has not yet been recognized and noted to be associated with a fatal arrhythmic syndrome.
You might think that edging toward an answer would be a relief, or a closure, but it is not. My dear boy left us in body, almost two years ago, and the hole is so wide in our lives that I must work not to fall in. The fact that this could touch our other children, nieces, nephews, and others is so frightening to me, that even denial looks attractive, a coping mechanism I only rarely use.

These are some websites in which, at the moment, Daniel is memorialized:

http://www.qtsyndrome.ch/memoriam.html

http://www.healthsystem.virginia.edu/internet/virtualtree/remembrancetree.cfm

http://www.sudc.org/






** I love and miss you Bug. **




The second song is sung by Jody McBrayer, a singer formerly a member of the group "Avalon". Jody left the group due to a viral heart problem. We pray for his recovery.

I Still Don't Eat Casseroles

Even after almost two years, I still can't eat casseroles, which is a shame because Daniel loved them, and occasionally, so did my Dad.







All These Years After the Funeral

All these years after the funeral,
casseroles still taste like death.
Salted with tears,
layered with mournful noodles,
every bite is bitter with grief.

It isn’t that I didn’t appreciate
those acts of love
brought in hot and steaming,
bubbling with cheery cheese,
bright vegetables chopped like confetti
and ready to feed the children.

It isn’t that I meant to be rude
to good friends trying to help;
but I was an alien in my own kitchen
learning to decipher the recipe for sorrow,
attempting to elude panic simmering in my heart
while casseroles, cakes, and shivering Jello salads
gathered on the table like disease.

All these years after the funeral
my heartbreak has nearly healed
but my tastebuds are damaged forever.

Author of poem unknown to me.

The Little Place

Do you remember the part in the film "Somewhere in Time" when the character Richard, finds a penny from the present day, and then is instantly transported back to our time, never to see his beloved Elise again while on this Earth ? I remember seeing this film in the movies and hearing the gasps across the theatre, as I shuddered. Losing our son to a trip to the bathroom is a lot like that moment. Unexpected, permanent, shocking, and horrible. I know that Daniel would not want me to focus on the last moments of his life, or what happened on only one day, so I am working on brainwashing.....no.......reprogramming, myself. When I return to those horrible moments of finding Daniel, doing CPR and the bizarre day that followed, I now try to focus on something wonderful and special that we did together or that we did as a family. I am going to try to do that today. I don't want to forget any time with Daniel, even that last difficult day. I want to remember how hard we, and the rescuers who arrived in the helicopter, worked to try to save him, but I know, that I must not continue to second guess myself and I must not ruminate here.
Today I will remember one of the wonderful moments we had together. When Daniel was two, we decided that living in the suburbs would make our children fabulous consumers. They already knew every fast food restaurant within a ten mile radius, and we hadn't been to 90% of them. They also loved Toys R Us, Costco and Sam's Club. Tae Kwon Do lessons alone could not keep us in the suburbs. We decided that we wanted our children to learn about animals, to hatch chicks, raise rabbits, have a horse, and perhaps a goat. We wanted them to be able to change their own oil, and perhaps the starter to their car. We wanted them, in short, to use their creativity and to learn to appreciate the world that God made, not so much the stores than man did. We wanted them to have some measure of self sufficiency as well. So, we bought country land and began to build a house. It wasn't completed until Daniel was three, and at that time, the children helped us pack everything in a huge number of strong boxes (the free ones from the liquor store.) We stacked these same size boxes in the large finished basement which opened into a garage, where the boxes could be easily loaded and moved from the garage area to a moving van. It took us a couple of weeks to do this. In that time, the three older kids restacked some of these boxes,and made a bit of a maze and a playhouse of sorts for Daniel. One day, as I packed and cleaned up another room in the basement, I had occasion to look for Daniel, and I called out "Daniel, where are you ?" To which he answered in typical adorable fashion, "I'm in the little place". Apparently, the playhouse made of stacked boxes all around was a special place for him. He was sitting on a box of books, reading an early reader, inside "the little place". He sat for a long time reading his books in total silence. He never forgot how much he loved a place small enough that it would fit only him. He was cosy and for those days before we moved, it was his place alone.
I am posting pictures today in memory of the little place. These are small homes for single people or small families, which would have fascinated Daniel when he was small, or perhaps even would today. I hope all of you find a small, cozy place in which you feel safe and secure, as Daniel did.



This haunting version of Danny Boy is sung by Eva Cassidy who went to Heaven six months after Daniel was born. In the song afterward, the Eva to which Mary Chapin Carpenter is referring, is Eva Cassidy.
In the following