Keep dancing

Tom's and my 40 year journey together has been full of adventures--some big and some small. But this latest adventure is full of unknowns as we learn how to cope with life changing health issues. It's hard to even know where to begin. I write this as a way for us to chronicle our journey. We share it as a way of keeping family and friends up to date.

Tom suffered a stroke in 2007. Speech and swallowing problems that followed were diagnosed as relating to the stroke. But when we look back, Tom was having swallow issues back in 2006. In March of this year we saw our speech therapist and she was concerned that Tom's speech had gotten significantly worse. She explained that stroke symptoms either stay the same or get better. It was our first hint that maybe this wasn't a stroke related issue. Later that week we saw the neurologist who expressed concern that more might be going on. He did an EMG to test for motor neuron disease (MND). He told us he was suspicious it was ALS (Lou Gerig's disease) but wanted to send us to the neurology department at the University of Washington for a second opinion.

When I originally called the UW Medical Center to schedule an appointment I was told they were making appointments in August--that sure seemed like a long time to wait. The following week we were given an appointment on April 16th. Thank you all who prayed for a closer date--your prayers were answered! We were very impressed with the doctors we saw at UW. The first was specializing in a neurology in his residency--a very smart young man who delighted in Tom's antics. The doctor he reported to is Dr. Weiss, a professor of neurology at UW. The result of the visit was another EMG and more blood work to rule out some remote possibilities before making a final diagnosis. We are scheduled to return to UW on May 6th to learn more.

Meanwhile Tom's swallowing has progressed from very difficult to now it's getting dangerous. In March he was put on a nectar thick liquid diet. We tried all kinds of soups and drinks trying to get enough calories into his body. Everything seemed to have too much taste or cause a burning feeling in Tom's throat. We finally settled on Ensure Plus--4 a day to maintain his already low weight. On April 8th he had had enough and decided to go ahead with a feeding tube which would be put into his stomach and small intestine. On April 21st the tube was put in and we spent a night in the hospital to make sure it was working properly. Wednesday we went home and started figuring out how to use all the new paraphenalia that goes with tube feeding. What an amazing thing it is. We are both relieved not to have to worry about swallowing.

One of Tom's comments,though, was he would really miss eating fresh crab that our son gets while scuba diving. We told he we would just blend it up and put it in his tube! He said he's still miss the taste. Well, we had an answer for that, too--he can put some in his mouth, chew it up and spit it out. We'll let you know about the crab after July 1 when the season opens.

Very early Friday, the 24th, Tom was running a fever, experiencing chills and coughing. We arrived at the emergency room at 6:00 am. Tom had developed a bacterial pnemonia probably due to aspiration--just what we were hoping to avoid. Today is Saturday. It's been a long day for Tom with nothing to do but lie in bed and let his body absorb the antibiotics. We've also been working on getting the tube feedings adjusted. I passed the tube feeding test tonight with Tom's nurse. Tom's temperature and blood pressure have gone up and he is coughing a bit more. He is very eager to leave the hospital. I just don't want him to get discouraged. I am praying he is well so he can be released and I can take him home tomorrow.

Many lessons have already been learned from this journey we are on. One is how magnified life has become. Everything seems clearer, little things more important and valuable. Children and grandchildren come to visit--the whole world stops while we share time with each other. Friends take time to call or visit and we realize the value of relationships. People tell us they are praying for us and we can feel the peace of God covering us in unexplainable ways--ways we just accept without understanding any more than it just is. Our relationship with Jesus is our rock and our security. We treasure our relationship with each other. These are the things in life that give life meaning and value. If you are one of those we speak of, thank you for being a part of our lives.

While sitting with Tom in the hospital I have been reading a book that has been on our book shelf for a long time. It's called "Boomerang Joy". It's by Barbara Johnson, a delightfully funny lady who I have adopted as my cheerleader and funny bone mentor. She's worth looking up. I'll share much more about her as I write but here is a paragraph sized synopsis of her book--it's her opening lines:

"No kidding! My life is full of complication and suspense. Not one of us knows what's going to happen next. Or how long we have to live. Or how long we have to love. That's why we have to make each moment count in a kind of boomerang way. Boomerang joy is the kind that smacks back to you when you add joy to someone else's life."

One thing that I am finding is that there can be great joy in the midst of hard times. There is joy in taking care of someone you love. There is joy when lives are shared in spite of the circumstances. There is joy in picking up a book and knowing it was meant to be read right now --a surprise encounter with encouragement and support. There is joy in having a son-in-love who when asked for advice on setting up a blog sits right down and makes it happen. (Thanks, Chris.)

Well, that's my first posting on this blog adventure. It's going to be interesting to see where it takes us.

In honor of Tom I leave you with these B.J. words: "Dance with joy and keep dancing."