We went to our final doctor's appointment for the year. This one was in Flagstaff. We went to see Dr. Rockow, Seth and Sydney's cardiologist. Mitochondrial disease is a multisystem disease process. The main disease process his neurologists are concerned about is cardiomyopathy--pathologic enlargement of the heart.
As Becky and I drove the 2.5 hours to the appointment, we were reflecting that it was around this time of the year 3 years ago that this all began. It was with Dr. Rockow when he noted cardiac conduction abnormalities with Sydney (Wolfe Parkinson White Syndrome) and he wanted to check Seth at the same time. He had an abnormal ECG but normal echocardiogram. He then recommended that Seth have a detailed endocrine/metabolic and genetic workup. We thanked Dr. Rockow for his help.
Ever since Seth had nerve conduction testing, where they stuck small needles in his large muscles, he gets really scared of doctor's appointments. He freaks out when they put the pulse oximeter on him. He freaks out when they put electrodes on his chest. He freaks out when he gets his blood pressure checked. I can't blame him. I've lost track how many doctor's appointments we've had. He is such a trooper through all of this.
Dr. Rockow reported that Seth's heart is placed in the center of his chest instead of the normal left side, but he didn't think this was a problem. His ECG and echocardiogram haven't changed. This is good news.
In May of 2010, (before Sydney had the diagnosis of mitochondrial disease) Sydney was preparing and planning on going on a multiday adventure with the youth in our church. This was going to model some of the experiences of the Pioneers as the made the trek west. They were planning on pulling handcarts, have minimal food and water, poor sleeping conditions, and exposed to the high temperatures of the Summer. One week before this adventure, Sydney fell down the stairs and broke her foot and had to have surgery. We were all so disappointed that she could not go on this adventure. As we look back, this accident was a major blessing! Had Sydney gone on that excursion, it would have been an absolute disaster with potential fatal consequences. Did God intervene?
As we close this year, I need to express gratitude. The journey continues and this year has brought us some tough times and some good times. I am most thankful for my wife Becky who has been the ultimate co-captain on this voyage.
I am thankful for friends who listen and care. I am thankful for my parents and my in-laws who have shared our burden. I am thankful for my health and job that allows me to provide for my family. I am thankful for co-workers and my boss who have had to deal with me and have been flexible. I am thankful for my other family members who have been with us on this journey every step of the way.
I am thankful for my children. Each one of them are unique and dear to me. My two mito-kids, you have endured so much. You don't fully understand what is going on. Life is not fair! Unfortunately, you have a disease that we don't know much about and how to best treat. As your parents, we promise to do all we can to get you the best medical help available.
My two other children, you have watched this whole process unfold. You have been scared, but you have replaced your fear with faith. Your example of faith has been a motivating factor for me to continue on and hold on to the belief that our Heavenly Father is keenly aware of our family.
As I say prayers at night with my youngest daughter, I am amazed at the thoughtfulness of her prayers. She rarely prays for herself. She prays for so many people and expresses gratitude for the earth, family, animals, and friends. She teaches me many things by her example.
Last, but not least, I am thankful for God. This journey has raised many questions for me. I would be ignorant if I did not acknowledge the many tender mercies that God has given us along the way. I want to close this post with one of my favorite poems by William Ernest Henley. I hope you all have a wonderful Christmas.
Out of the night that covers me,
Black as the Pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeonings of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find, me unafraid.
It matters not how strait the gate,
How charged with punishments the scroll.
I am the master of my fate:
I am the captain of my soul.