Sunday, August 19, 2012

Life on the Pequod...The Tempest is Raging on

"Call me Ishmael. Some years ago- never mind how long precisely- having little or no money in my purse, and nothing particular to interest me on shore, I thought I would sail about a little and see the watery part of the world. It is a way I have of driving off the spleen and regulating the circulation. Whenever I find myself growing grim about the mouth; whenever it is a damp, drizzly November in my soul; whenever I find myself involuntarily pausing before coffin warehouses, and bringing up the rear of every funeral I meet; and especially whenever my hypos get such an upper hand of me, that it requires a strong moral principle to prevent me from deliberately stepping into the street, and methodically knocking people's hats off- then, I account it high time to get to sea as soon as I can. This is my substitute for pistol and ball.   With a philosophical flourish Cato throws himself upon his sword; I quietly take to the ship. There is nothing surprising in this. If they but knew it, almost all men in their degree, some time or other, cherish very nearly the same feelings towards the ocean with me"

Those who have read Moby Dick will recall these words.  I love this book!  The reasons Ishmael decides to stop what he is doing in his life and go on his journey aboard the Pequod are similar to the way I have been feeling.  Unfortunately, I can't just get on a boat and sail away.

There have been many days during this journey over the last few years that are memorable in good and bad ways.  Monday, August 13th was one of those indelible days you hope you don't have to have again.  I was at work and received an unexpected email from Dr. Shoffner with Spencer's muscle biopsy results.  The results were conclusive that there is mitochondrial dysfunction.

 Although based on everything that was done so far and from our initial consult with Dr. Shoffner, it was pretty certain he had some form of mitochondrial disease, there was still a chance in my mind that he was OK. Those thoughts came to an abrupt and unexpected end Monday afternoon.  All I could do was weep!  I tried to put myself in his shoes and imagine how he was going to feel.  He had told me several times that he felt there was nothing wrong with him.  I thought to myself, now I have 3 children with mitochondrial disease!  The self-pity and why me were going crazy.

Mitochondrial disease is a complex and difficult diagnosis but it involves clinical manifestations, laboratory data from blood, urine, and cerebral spinal fluid, mitochondrial analysis from a  muscle biopsy, and most important and most difficult is finding the gene responsible for the dysfunction.

The following is a quote from Dr. Shoffner:  "Mitochondrial diseases encompass a broad range of phenotypes ranging from neurometabolic diseases to certain cancers.  Clinical manifestations range from a single affected tissue to multi-organ disorders.  Symptom onset can occur at essentially any age and has the following patterns: 1. congenital onset; 2. Slowly progressive onset at any time during life; 3. Acute/subacute onset at any time during life" 

When Becky, Seth, and I returned from his initial appointment with Dr. Shoffner in Atlanta in December 2010, we had a family meeting to discuss with our children what was going on with Seth and that his prognosis was uncertain and poor.  It just so happened that a couple of weeks prior to this, Seth made a boat at pre-school.  The boat was made from paper cut out from colored paper and glued onto a larger white piece of paper.  The boat had a large sail.  The boat is framed and on one of the walls of our home.  This boat is very special and has significant meaning to our family.  This boat is our Pequod and is shown below.

Our Symbolic Boat--The Pequod

During this family meeting, I explained to my children that our family is on a journey and our method of travel is a boat or a ship.  Becky and I are the co-captains of this ship and all of our children were shipmates with each of us having very important responsibilities.   Our map was the scriptures and our compass or GPS was our Heavenly Father.  Our destination was unknown.  Our length of travel was unknown. The difficulty of the journey was unknown.  The conditions of the sea were unknown.

The only knowns were we had love that bonded us together which was stronger than the fear of the unknown future and territory that was ahead.  We had a map that was 100% accurate and the compass/GPS was completely reliable.  If we were to utilize theses tools, we would arrive at our destination.

My children are familiar with many stories of ancient ship travel including Christopher Columbus, Jonah, Lehi, and Jesus.  Jesus, after a long day of service, got into a boat to cross to the other side of the Sea of Galilee.  As they were traveling across the water, Jesus slept on a "pillow" while there was a "great tempest".  The boat was filling up with water and Jesus was still crashed out on his pillow.  The disciples were fearful of their very life and woke Jesus up and asked him: "carest thou not that we perish".  He spoke saying: "peace be still" and suddenly "there was a great calm". Matt 8:23-27,  Mark 4:36-41 

Sea of Galilee 1999

It also so happened that at this time, I was reading Moby Dick, by Herman Melville.   This great American novel about the Pequod whaling ship and its captain, Captain Ahab, who's life is full of shame, anger, and fear as Ahab sets out on a whaling voyage to find and kill Moby Dick, the Great White Whale who in an earlier voyage  bit off Ahab's leg and destroyed his ship.  Ishmael, the narrator, decides to go on this voyage to deal with his own depression, shame and fear. 

Our current situation and the uncertainty of it and comparing it to a journey on the water seemed to fit. My children understood the analogy and were on board as mariners and shipmates.   

What was not expected on this maritime voyage at that time was my other children would also be affected by mitochondrial dysfunction.  As unpredictable as mitochondrial disease is, it was also a complete shock and unpredictable that my boy Spencer would come down with this disease.   Sadness, grief, sorrow, anguish, distress, fear, lamenting describe to some degree my feelings, but I really cannot find the words to express how I truly feel.  Spencer and I have been mountain biking together since he was 6.  We have back packed together multiple times.  Recently, we have started road cycling and trail running together.  To have that taken away from us now really hurts!  

Spencer Tour of White Mountains 2011 Podium Finish

It is bad enough to have one child with an illness that is chronic, incurable, and not treatable.  To have 3 children now effected with this insidious disease is inapprehensible.  Life has been a struggle each day.  As I look back over the last several months and the challenges we've all faced, one thing I can say is I have the best co-captain in this journey that you can get.  Not only is her physical appearance beautiful, but inside she is golden.  She is strong and determined where I am weak.  I thank God daily for Becky.  

The other unexpected part of this journey is Sydney.  She is turning 18 in 2 months and it has been recommended by several of her doctors and teachers that we obtain gaurdianship/conservatorship over her.  You never expect this and it is impossible to prepare yourself for this.  As you watch your children grow up, you fully expect when they turn 18 that they will be physically, mentally, emotionally, and spiritually prepared to live on their own.  You don't expect to hire an attorney to make your case before a judge that your daughter in incapable of making decisions for herself.  We have been to multiple family events this past summer.  It has been very difficult listening to her cousins and friends speak of their post-high school plans.  When we spoke with her about getting guardianship over her, for the first time, she had some insight into her illnesses.  She cried as Becky and I sat on her bed.  "Why can't I be normal, I hate this disease, I hate taking all these pills, I just want to be normal like the other girls my age".  What do you say to those questions?  We just held her, cried with her, and told her we loved her.

Pacific Ocean, Monterey, California July 2012


As our family has been on our boat, I can relate to the feelings of the disciples--especially the feeling of fear. I long for the feelings of peace and calm. How does one experience these feelings when the tempest is relentless?  Oh how this most recent leg of our journey has been difficult. I wish the storm would pass and we could have some smooth sailing for awhile.  It seems that the post I wrote on Overcoming Adversity came from someone elses mind.

The text to the hymn "Master, the Tempest Is Raging" by Mary Ann Baker seem appropriate today. I have only included the second verse.  The third verse does not apply at this time--hopefully soon.

Master, the tempest is raging! the billows are tossing high!
The ski is o'ershadowed with blackness. No shelter or help is nigh.
Carest thou not that we perish? How canst thou lie asleep.
When each moment so madly is threatning. A grave in the angry deep.

Master, with anguish of spirit I bow in my grief today.
The depths of my sad heart are troubled. Oh, waken and save, I pray!
Torrents of sin and of anguish sweep o'er my sinking soul,
And I perish! I perish! dear Master. Oh, hasten and take control!

1 comment:

  1. Your faith is inspiring. May God ever be with you and peace be your companion. I love you all.