Wednesday, February 27, 2008

Things I know about being blessed

Fourty-eight years ago, I came into this world. I was given 24 hours to live and went on to live another approximatley 421,000 more hours so far. We were not rich in money but we were rich in love and family. The fourth born of five children, I was asked to be my brothers eys when I was seven. Through his non-seeing eyes, I learned to describe the world in "living color." I taught him the colors of the world by comparing them to the touch and feel of things around us. Green was the color of a lime flavored Fruit Loop. Red was a potatoe fresh from the oven. Though he could not see the colors, he had things he could relate them too. I was blessed in so many ways to be his eyes and grew up knowing I was blessed. We learned to climb trees together and run as fast as the wind. His left hand never came off of my right shoulder as we raced through life together. I went to summer school with him and was able to help many other kids that were "challenged" in some way. I befriended the nieghbors nobody else wanted to know. We learned together that they were as capable of playing games such as baseball and hide and go seek as any kid was. I know today that I was being prepared for the life my wife and I would share for 24 years.
My family moved to Canada when i was thirteen and we lived many miles back in the mountains. No running water and no electricity but we had 500 acres to explore and grow up around. Though we enjoyed every kind of wildlife you could imagine, one thing was missing. We were to far back to have schooling and I was needed on the ranch. My "traditional" education ceased and I began a new type of learning. I studied everything around me and listened and learned from the adults in my life. If I did not know an answer to a question, I found it. I was determined that I would never be known as "the guy with an 8th grade education." I self taught myself through reading everything I could get my hands on. I made it my personal goal to be able to carry on an intelligient conversation with anyone on any level.
When I was twenty years old, I joined the Air Force. My education was furthered in the four years I served my country. No one ever asked me if I was educated because I learned fast and studied hard. It was while in the Air Force that I met and married my wife of twenty-four years. That was also the time that I realized part of why God had blessed me with the years of working with those that were "challenged." My wife developed Muscular Dystrophy one year after we were married. We had our first child by then and I was working a full time civillian job as a foreman. As my wifes disease progressed, we spent many hours, days, weeks and years in hospital rooms.During a year of total remission, Sheila became pregnant with our second child. Though not planned, we were estatic to learn of the blessing to come. The pregnancy was hard and she spent the better part of 6 months in the hospital under intense medical care. Our daughter was born two months early and weighed only 3.2lbs. She was in the Neo-Natal Unit until she was seven weeks old. I would go up each night after I got off of work at midnight and learn to feed her and care for her. There were special ways to feed her and infant CPR classes to be taken. She would come home on a heart monitor and there were classes to take for that. My wife remained in the hospital for another 5 months after our daughter came home. I would work my night shift job and come home and feed our daughter. I would wake in the night to feed her again and then my parents would wake me when they were leaving for work. I survived on two hours sleep a night for several years. I had two babies, age new born and two years old to care for and my wife to visit each day as well as work. My wife came home and went back into remission for several years. Together we found a way to purchase our first house and live a wonderful life together. We could not have done it without the loving help of my family, that I do know. In spite of all the hurdles in our life, we made our life and our children's life the best it could be. Insurances ran out and renewals denied but we continued to give our girls everything we could. They never knew when we were strapped for money or going without.
We sold our home to move to a smaller town to raise our daughters. The city simply was not a safe place to raise them. We bought a 3 acre property and lived there for almost twenty years. My wife was hospitalized over 35 times in those years but we continued to be a family and to love our daughters and each other beautifully. In those years I wanted so much to write. I had written songs since I was thirteen and written short stories when ever I could. My wife and kids encouraged me too try and publish them and in 2004, my first novel was published. I cut a C.D. the same year of 13 of the 100 songs I had written. Both went on sale and though I didn't become rich in money from them, my life was enriched to know I had become a published author and singer/songwriter. In 2005 my second novel was published and today I wait for novels three and four to be published.
Somewhere in the mix of life and all we had endured, Bipolar set in and I became lost in my ways. Life took many turns for both my wife and I but we remained with one another until March of 2006. The disease she had fought so bravely and so strongly for 23 years had finally taken it's toll on her precious body. After being in a coma for 60 days in 2005 and then again for 30 days in 2006, my wife went to heaven on March 8th, 2006. Loved and missed more than my words could ever convey, I continue to write as she asked me too. I held my novel up to the sky in the Barnes and Noble in the Mall of America and through tears I said, "We did it, Baby. We made it here."
Is there anything that I have accomplished and am really proud of? I have two daughters, one that went on to college at the Le Cordon Bleu in Minneapolis, the other happily married with two sons. Both successful in my heart. I walked with my wife through Hell's fires and back and stayed loving her even unto now. I worked hard for a living and through it all, found a way to educate myself and have two novels published along with a C.D. produced. Never in the 24 years did we sacrifice love our happiness for anything we ever achieved. I guess my answer is in this article. Yes, I did accomplish something I am proud of. Through more tears than you could imagine in a lifetime and struggles that would have destroyed a lesser love, I knew and still know love and life. I have been blessed more than any one man ever deserved and I know that fact. These are just some of the things I have accomplished in my blessed life.I will continue to make accomplishments until the day I am called by the Lord to spend eternity with my Love.

Things i know about song

Sometimes when we are down, we strive for something that will soothe our inner-self. We may go out for a walk, which is of course a wonderful way to help both body and mind. We may visit a friend we haven't spoken too in a long time. But what happens in the case where we just don't want to go outside. The snow is deep, the rain is torrential or maybe... we just want to be alone with our thoughts. What ever your reason may be for staying right in the comforts of your own home, there is something that can help your soul.
Music! Song has been the element of sorries, I love you's, can we be together tonight's and even I hate what you did to me's.Songs have been written about mothers and fathers lovers and sweethearts.They have been written for any scenario you could want to listen to.
The songs you choose may be wild or soft and sweet.But it is truly "music" that soothes the heart. If that is what you are looking for, then I have a wonderful CD for you. It is a collection of 13 of my best songs, written by me. They are easy listening songs about love, life, loss and the words that say "I love you" in the sweetest way. The music is soothing enough that people tell me they use the CD to help their babies sleep. My daughters friends from college all had one of the CD's. They played it while they studied as they said it kept them calm and relaxed.
The CD was such an enjoyment to cut and I love knowing other people are relaxing and enjoying my music as much as I have enjoyed writing them. Contact me through my mail at if you really want to relax with some good music.

Wednesday, February 20, 2008

Things I know about bitter/sweet

Bitter-sweet. Now that is an oxy-moron if I ever saw one. A bit like "colder than Hell" and sometimes just as confusing. But the word is real and it has so many meanings. The one that I am talking about is a feeling, an emotion that comes to us many times in our lives.
As my daughters have grown up, I watched them go from babies to toddlers to teens and on to becoming adults. The excitement in seeing my youngest going off to college to be a chef was "bitter-sweet. Seeing her grab one of her dreams and live it was the sweet in my heart. Knowing it would take her hundreds of miles away from her mother and I was the bitter. Seeing my oldest daughter find the man that would love her unconditionally was the sweet. Knowing she would move away from us was the bitter.
And then there was MY Sheila. The love of my life, who walked through fires with me and never let go of my hand was truly the Most sweetness of my life. So many years of suffering and enduring and yet never ever saying "I quit." Quitting was simply not an option for her. Then came the day that I took her to ER, where we had been a thousand times in our 24 years. Such a long wait to decide what to do. Then emergency surgery and waiting alone in the dark room, wondering what would be the outcome. Hearing her say to me as I was going to smoke, "Wait just another minute or two,o.k.?" Never once even considering the thought she might die. We had been here and done this more times than I could count. She Always came out of it. But not this time.
When the surgeon came out and told me he could not save her, I dropped to the floor, my legs no longer strong enough to bare the weight of such words. I begged him to do more. I told him she was my life. I told him... "I am nothing without her." Words that were no longer strong enough to keep her here with me. The "bitter" reality of it all. Where then does the bitter-sweet lie now? Bitter that she is gone now when i wanted another 24 years with her. Knowing I would have lifted her in and out of bed, in and out of the wheelchair, in and out of the van, just for a little while longer with her. Bitter that that was taken from me.
The sweet? Knowing she no longer needed me to lift her, to carry her, to make her as comfortable as I could. Knowing that, because she was now in heaven with our Father God. The knowing that she no longer hurts and no longer endures all that she did when she was living her on earth.
Such a word seems as if it should not exist, but it does for all of us somewhere in our lives. A word that reminds us that there is always something sweet in the bitter, only though... if we choose to look for it.

Saturday, February 16, 2008

Things I know about dreaming...

Dreaming... not like the lay in bed and sleep dreams. The dreams we have for ourselves and our lives are what I am writing about. And that question of whether you found them, lived them and felt them within your soul. When I was young, I wanted to be an oceanoghapher, I wanted to film and save the sea-life.Shark
As you may have read in another blog, my life took a huge turn and I did not become an oceanographer. Did that mean that I did not live that dream> I don't think it meant that at all. Through books and films and movies and any and every link I could find to the ocean, I DID live it. I did find it and feel it.
I think that we don't have to actually physically touch the dreams we have. If we can find a way to make them a part of our lives, then we have lived them. Virtual realities, if you will. I have never walked on the moon either, but because of a helmet and a video wrapped around my eyes, I felt it and walked on the moon.
A Planetarium takes us into outer space and causes the feeling that we are rocketing through the galaxy, meteors flying past us, planets appearing and then disappearing right before our eyes. I was 12 years old when I visited a Planetarium in Florida. I remember the girl sitting next to me getting "sick" everywhere because the movements were so very real. She and I were as much flying through space as any astronaut ever did. We Lived it, felt it...found it.
The reason I say these things is this. Sometimes, because we don't think we can nor will ever achieve a dream, we let it go. We allow it to become lost in a very far away place in our minds. Trust me, it IS still there somewhere. Sometimes we have to look for awhile, try to recall if we even had a dream. If we look hard enough, it will manifest itself again to us. We should never let a dream die just because we can't or may not ever realize it as a job or adventure. Find a way to live it within yourself. Make it as real as you can. Todays technology puts the entire world right at our fingertips. It sets before us all the means to reach out and touch the Sun if we choose to do so...minus the burn.
Things I know about dreaming are that they never need to die. They are always with us as long as we keep them alive. They can come to us in many forms and stages. And I KNOW they can become a reality in the blink of an eye. So don't give up on a single dream. They are yours to keep... More to come later, Darrel

Sunday, February 10, 2008

More on living with a spouse with M.D.

We really wondered what our life was going to be like when Sheila was diagnosed with Polymyositis. We already knew from the year before that it would mean many doctors and many hospital visits. We would travel hundreds of miles to Rochester, Mn. and the Mayo clinic. We would become familiar and aquainted with the motel staff near the clinic. We knew all the coffee shops and the best and worst places to eat. Perhaps... we were a little too familiar.
For those of you wondering, "Polymyositis is a nuero-muscular disease that normally effects woman between 21 and 25 years of age. It is one of a group of muscle diseases that involve inflammation of the muscles or associated tissues; the inflammatory cells of the immune system directly attack muscle fibers.
The cause is unclear; researchers suspect viruses or exposure to certain drugs might trigger the misdirected immune response. The symptoms are weakness of the muscles of the hips, thighs, upper arms, top part of the back, shoulders and muscles that move the neck; pain or tenderness in affected areas; possible heart, respiratory and swallowing problems."
Sheila experienced all of them. Her heart weakened over the years from the disease and the effects of the medications she had to be on to live. She was in and out of the wheelchair, sometimes out for 3 or 4 years. She had the strength and heart of the greatest warrior and never complained about her condition. She told me once that all she wanted to do was to have the ability to take care of her husband and her daughters. She did both with beauty and the greatest of love.
How were we effected by the things she dealt with daily? We began looking for places that were easy access. This all started before the push to make all public establishments accessible for the disabled. And believe me, there were a LOT of places that were NOT. We found that many places were not even interested in changing things until it was law. part of living with the disease was being respectful with love to Sheila. Understaqnding that if i wanted to go somewhere and we found that we could not get in, it hurt her because she felt she was depriving me or the girls of something we wanted. So we searched and found all the places we Could get into.
Dignity was another very important part of life with Polymyositis. Sheila was often dependant on me for showers and bathroom and dressing. Finding a way to allow her to feel as if what we did was as natural as breathing. And it did become that and was simply a way of life for us. We laughed at the learning new things and the best ways to do them. I made a few mistakes but learned from them right away. I found the ways to show her I didnt mind doing anything for her. I showed her that our love could and would withstand anything. She became comfortable and our lives became as they were, without any questions or regrets.
We learned the best ways to get in a vehicle and the easiest ways to get in and out of a house. We learned to LIVE with Polymyositis. Because if you choose, there is always a way to Live.

Thursday, February 7, 2008

Life with Muscular Dystrophy... from the spouses side.

Sheila and I were married on Sept. 4th of 1982. The first eight months were as any new marriage and we went everywhere. We were so very active and very rarely were we home.Our life was blessed with a child and everything was right in our world. The whole story is in another blog here and so I wont repeat it word for word.
One year into our marriage, Sheila was diagnosed with Polymyositis. We were to learn a few months later that it was one of the 40 Nuero-muscular diseases of Muscular Dystrophy. Sheila had already lost the use of her legs and been hospitalized 4 times, once for 2 months. When she came home, our life was changed in so many ways. Though we took the changes with loving care, we knew our life was forever changed.
Did her disease mean we could no longer have a "life?" Was it going to dictate and control everythimg we did for the rest of our lives? Could we continue to dream and want things and raise our children in a world that hospital chairs and motel rooms were more common place for us then our own home? So many questions. Questions that could really only be answered by Time itself. And time did answer them for us.
We learned that we had two choices for ourselves. We could take the disease and let it rule our lives. We could face our challenges with everything we had and all the love we could muster up. We could just let go and allow Polymyositis to become us or we could become the controllers of our own lives. We chose to be the ones that decided where we went and what we would do with our lives. Certainly there were times when we were not able to go places or do things while her disease was in full swing. We had to think about what we were doing and the best ways to do it. But we did'nt allow her illness to stop us from buying a house. We did'nt allow it to stop us from going out and enjoying life to it's fullest. Our love was strong and she was the strongest woman I have ever been blessed by heaven to have been so much a part of.
I will tell you more of what we did and how we adjusted our lives to fit the things we would now face. Not a disabilty but more an a incovienance for us. Our lives for certain changed but Not our dreams. Challenges we met and conquered so that we could live a life that was as close to normal as could be.
The MDA helped us in so many way and I will always be more than grateful to them for being there for us. I will speak only good things of their organization because they were so to us. I will write more in a new blog.
Always, Darrel...

Monday, February 4, 2008

From A Friend... that Touch that warms...

This is a paper that was turned in by my daughters best friend. It touched my heart so much that I wanted to share it with you.Just enjoy as my daughter and I did. Darrel

My best friend Shannon and her family mean the world to me. Shannon and I met when we were in college for culinary arts in 2003. We were both on our own for the first time and both more than 3 hours from our parents. Shannon and I lived together through a student housing program and after a couple weeks Shannon and I went on our first road trip together. That was the beginning of our lasting friendship.
Shannon lives in Iowa and doesn't drive so I told her I would bring her to her family's to visit. At first her parents hated me. They could not understand why Shannon liked me, or would have brought me home. As her parents got to know me and I them, they started to understand why Shannon liked me so much. Shannon's parents are wonderful people that I fell in love with and they became a surrogate family to me. Shannon's grandma and grandpa treat me like I'm another one of the grandkids, and I'm like another daughter to Shannon's parents.
Shannon and I both left college at the same time, she went back to Iowa and I went back to Minnesota. Shannon and I hardly ever get to see each other anymore but when we do it is just like old times and we just talk a lot more to make up for the months we missed. Shannon tells me about the things that happen in her life and I tell her about mine. Shannon and I talk occasionally on the phone but as we lead busy lives it's not as often as we would like. When Shannon and I talk she can tell if something is wrong, without me telling her anything. Shannon is always willing to listen to me, and give advice when she feels it's needed.
When Shannon's mom died Shannon called me at 6am to tell me. I hadn't slept yet so I slept for 4 hours and left for Iowa to be there for her. Shannon's family is so strong and they did very well. But it was hard for everyone to lose Sheila because she was such a wonderful lady. But Sheila had suffered many, many years with different illnesses and disabilities. But the beauty of Sheila is she never let it stop her from doing a single thing. She was a strong wonderful woman that led a wonderful life and blessed many people with knowing her.
Shannon's dad is also a wonderful person. When I call to talk to Shannon I always talk to him too. He understands my mind in a way that no one else I have found does. When what I say sounds abnormal or crazy to me he understands it, and a lot of times has been in the same situations. Sometimes I call just to talk to him because he helps me not feel crazy.
I was blessed the day I met Shannon and she will be my best friend for the rest of my life. Even if we only see each other twice a year and only talk on the phone once a month, Shannon and her family will always mean the world to me. I would do anything for her and I know she would do the same for me.

Things I know about the power of a touch

Strange when I sit and think about things that have helped me through out my life. There have been people and places and sounds and experiences that have all changed my life in some way. Some of them for the good and some just for the learning of it all.
The people of course being those that have entered my life, some for just a season and caused my world to change. Their advice or just lending an ear often rook me away from a scarey place. Places like beautiful British Columbia Canada, a place that held beauty and learning that I may never see again. Experiences of course almost always teach us something. If they don't then as the saying goes... "History will repeat itself" until you get it right.
Sounds? How could a sound change your life? I was walking in the woods one day and I heard a branch snap loudly in front of me. A black bear was crossing my path, uninterested in me, thank goodness. It wasn't the bear that changed anything for me. It was the sound of that branch snapping. I had written in a previous blog that I wanted to be an Oceanographer since I think I could walk. But life took a change and off to Canada and away from the ocean we went. But it was there that in hearing that "sound", I knew what I wanted to do with my life. I went back to my cabin, found a pencil and paper and began to write. From that sound, I wrote a 300 page novel.
These are things that touch our lives almost daily. Their touch brings to us opprtunities or new walks in our lives. Journeys that will take us around the world and back again. but thinking about the most wonderful touch, I think that would be this. You are sitting at the table drinking coffee. The love of your life is up doing things. Your mind is searching for answers and you can't seem to find one. You are a million miles away from anything. Suddenly, she comes to you and brushes her hand across your cheek. The warmth of her heart is transfered from her hand to your heart. For a moment, nothing else in this world matters but that touch. You reach up and take her hand in yours and all worries seem to disappear. A simple touch to a loved ones hand, a gentle carress that says all you can not. A caring hand on a friends shoulder. These are the touches that truly can change ones life. They can stop the saddest of sads and make you forget the thoughts that wer bothering you.
Sometimes, for no reason at all, reaching out to touch a friends hand or cheek or rub their back for a moment can mean the difference between staying... and going. That is some of what I know about the power of a touch.

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