This post is to honor my son Alex Townsend Owens’ 40th birthday! This is my middle son. Alex was a delightful child. His imagination was expansive and he could entertain himself for hours. He was longed for for many years before he arrived. He was, unfortunately, born into a family of medical issues, between a brother who was fighting cancer and a brother who was born with facial birth defects and heart issues.
Alex stayed healthy while we dealt with those issues of his brothers, Adam and Ian. He began having severe headaches around the age of 5 with unusual visual disturbances. We searched for medical intervention in several places. But to no avail. Finally around the eighth grade, he had an episode of double vision, and ataxia, the ability to move forward in a straight line. He had to hold on to objects to keep his balance. This happened while he was at school and was very frightening.
Again we searched the country for information. We have been to doctors and clinics in Boston, in Dallas, in Mississippi in Birmingham. Finally, we got a diagnosis at the University of Michigan, which has a program of research into his rare disease. He was diagnosed with OLIVOPONTACEREBELLAR ATROPHY – very rare and never seen in a child previously. There is an area of the brain called the cerebellum. Many nerves flow from this area including the optic nerves and nerves related to balance and motor skills. On Alex, part of this area had atrophied. Alex quickly became more affected and was only able to finish high school through homebound classes. He was a graduate with the Class of 2000.
This man turns 40 years old today. His life has been filled with pain and sickness since that day in 8th grade. He has had several surgeries on his eyes through the years, and was able to get fairly decent vision for a time. However, he now is legally blind and only has vision in one eye due to macular degeneration. His pain comes from severe head and neck issues and he must walk with assisstance. His fine motor skills have remained intact and we thank God for that. His intelligence has only soared through the years, as he is a voracious reader and studier of the world agenda. He is well versed on most any subject. This disease causes no loss of cognitive skills.
He has become an important force in his nephew’s life. Alex has always loved to teach and explain the way things work, and he has had a willing student in Levi. They, along with Levi’s dad, Adam, and his Uncle Ian, have a massive interest in Star Wars. The four of them can tell you way more than I can even imagine. They can discuss it for hours! Alex is very interested in technology and has also passed this love to Levi. The two of them can discuss and play video games for days!
Through the years Alex has missed out on so many things. His disease can keep him bed bound for days upon end. He and his dog, Finn, pass the time listening to books and music or TV. Alex especially loves documentaries. He is well up to date on politics, the culture and public relations.
it is seldom he is able to leave the house for social events or family time. So much of his time is spent alone. He has his own apartment attached to our home and is as independent as he can be.
The amazing thing about Alex is his heart and his spirit. This life he was given is no picnic. He fights every single day. There is never a day he is without pain and never a day he can just walk in the yard with out aid. All the things we take for granted, are kept from him by this insidious disease. It is hard for him to go about even daily tasks like showering and food preparation. Nothing is easy. But, God has been overly gracious to provide Alex with a gentle, kind spirit. He never complains. He never fusses. He is always kind. Always ready to add an encouraging word. Always offering to help in any way he can.
Alex has great faith in God. He trusts Him as his personal Savior and trusts Him for his daily needs. God has been so gracious to us to allow us to provide for all of his needs and extras along the way. His daily medication is a continuous battle with insurance companies. But, never has he had to go without. God keeps every promise! Our family believes that God Has a purpose in all things. While we may never understand on this earth…He knows. And, because of His goodness and His promises…we know that Alex’s life is in His constant care. We are blessed by him as part of our family. And we are sure of his healing in God’s timing.
On the very rare occasion he feels like leaving home….everything else stops and we all SEIZE THE DAY!. Recently he was able to fish a little with Ian and Don. What fun they had! In the midst of trials and hard times, there are such lessons to be learned. We fail, if we don’t search the circumstances and find the knowledge to be gained and treasure the joy in the moment!
We have no idea how this disease will play out for Alex. The progression seems to be at a standstill for several years. But, we will not worry or fret. God has proven himself over and over to us. He loves our Alex more than any of us can. His Dad and I and his brothers and their wives and Levi will always be available for Alex. He has a dear aunt, uncle and cousins who adore him. He is surrounded by a support group who rally whenever needed.
On a personal note…Alex is a my hero. He patterns for me daily how to walk in kindness and gentleness. He shows me how to accept what is and deal with it in a compassionate and loving way. He is a great man, full of wisdom and courage and honesty and grace. On this his 40th birthday, I honor him as the gentle place I can always count on. I thank God he was born into our family. We all have learned great lessons in living from him. Happy Birthday, Alex. You are loved forever.