Today, I’d like to share with you the story of my sweet boy, Alex.
I tried very hard to have another baby after Adam was born, but it took surgery and fertility treatments to become pregnant. But 8 years after his brother, we had this beautiful blond haired, blue eyed cherub. He was a sweet baby, and quite different in temperment from his older brother. Alex was a very contented child and could entertain himself for hours on end with a few toys in his pockets. As a matter of fact, when he got up in the mornings, he would put 3 or 4 things into his pockets and that is what he would play with that day. So, no matter where we went, he was content. It always amazed me at the
things he would say and ask. He was so inquisitive about things that most kids wouldn’t notice. When he was 20 months old, I had another son,who was born with severe birth defects and heart trouble, so I lost a lot of time with Alex because so much of my time had to be spent with Ian. (I’ll tell you Ian’s story later). Also, my oldest son, Adam was diagnosed with cancer when he was 4. (I’ll tell you his story later,too). Since treatment for Adam was ongoing, I had to leave Alex with my sister for weeks at a time to be with Adam in the hospital about 200 miles away. Ours was a crazy life there for a while. But, back to Alex. He was different from his brothers. They were very agile and quick, and Alex was always a little clumsy and not quick to try new things which required physical dexterity. Nonetheless, he was a great student, had lots of friends in school and church, and was a very happy boy. He just did things on HIS timetable. When he was in the 8th grade, I got a call at work from a dear friend, a teacher at his school, telling me to come get him. When I got there, He could not walk straight and his vision was doubled. He said it happened suddenly, as he was walking down the hall. We went straight to the pediatrician, who sent us straight to the hospital. Immediate cat scan showed nothing…so off to the hospital in Birmingham. After several days of tests, we were told his cerebellum showed signs of atrophy. Well, the doctor told me this and left. Without saying anything else. I came home to my pediatrician and the journey to find answers began. No one could tell us why this happened, or what the prognosis was. Now, my training is in nursing, so I have a little medical knowledge, but this was way above anything I had ever even heard of. Apparently the doctors here were in the same boat. We were sent back to Birmingham to another doctor, who tried some medicines , to no avail, and finally he sent us home with no real answers. This is when I decided to do my own research. After tracking down several leads, we ended up at the University of Michigan with a doctor who is a specialist in ataxia disorders. They did extensive testing on Alex and we finally got some answers. He has cereberllar atrophy with ataxia. There are portions of his cerebellum that have just died. No reason…they are just gone. Since nerve impulses travel through the cerebellum, these messages will not go through…there is a break in the connection. His optic nerve is damaged, which means his vision is extremely poor. He sees double all the time, so he wears prisms in his glasses. His eyes also jump all the time, too and he has lost most of his peripheral vision. His balance is also affected. He walks like he is drunk and has to use a cane. Even with that, he still has trouble staying upright. He also has a wheelchair he uses on occasion. Sometimes, his speech can be affected, causing him to have trouble getting words out and causing his voice to be very soft. His fine motor skills were expected to become involved…but Praise God!, they have not. He has great dexterity in his hands and is able to use them very well. And since he loves the computer…his lifeline…this is such a blessing. We then ended up at a doctor in Jackson, Mississippi, who is a specialist in cerebellar atrophy, and he has tried to narrow down his exact disease, but it continues to be a mystery. We know lots of things it is not….but not exactly what it is. We do know it can be genetic…but his doesn’t seem to be. It can be a spontaneous mutation. These symptoms do not usually show up until middle age…but his started very young. The disease can progress or go into remission or stop completely. His seems to be stopped for the time being. Thank-you, God!
The most puzzling thing about Alex’s condition is the severe pain. He is in constant immobolizing pain. Mostly in his head, neck and shoulders. We have been to pain clinics, and pain centers all over the U.S., and no one has been able to help. We have tried hypnosis, acupunture, massage therary, and every drug known to man. Nothing stops the pain. We would try voodoo if we thought it would help. This is what keeps him homebound. He is not embarressed or ashamed to use a cane or a wheelchair, and would love to be able to be out in the world…going to school, living on his own. But the pain is like a monster that has him its clutches and won’t let go. We continue to search out new treatments and doctors. We will go anywhere and try almost anything. We pray daily for wisdom and guidance.
I often wonder why God has not healed Alex. Actually, we don’t even ask for healing anymore. We ask for relief from the pain. Because he can deal with the disease and its limitations. It is the pain that holds him hostage. I know in my heart of hearts that he belongs to the Lord. He is a Christian and loves the Lord. And I know God loves him more than I do. But a mother’s heart is torn in two when she sees the suffering of her child and she knows there is nothing in HER power to do. I trust God above all. I know He has Alex in the palm of his hand. But I also get weary sometimes and that’s when I have to tell the Lord that we’ve reached our limit. I complain and cry and get mad…and God loves me right through it all. Out of the blue…Alex will have a good day, where the pain is lessened, and he can get out for a while. I have dear friends who pray for us daily and who are ready at a moment’s notice to “take me away.” I have my sweet Mom and Dad who live a few blocks away, who are always ready to assist. My dear sister, who Alex loves so much, is only a call away. My oldest son, and his wife, have stepped in to assist Alex when I am away. Adam is a great comfort and help to his brother. We have a wonderful church family who holds us up in prayer. We have a thriving business, which God continues to bless, so we are able to pay our bills. Alex’s meds alone cost about $800.00 a month. My husband is a good provider and a stabilizing force in our home. So, God continues to bless…even in the storm. I want it to be known…by whomever reads this…that I trust in God completely…even though I don’t like my circumstances…I trust Him to control our lives. He does what He said He would. He gives me strength, and He meets our needs. He lets me cry and complain and moan and groan…and holds me like a child and understands. He is God and He is my Rock. I will continue to Praise Him.
The following article appeared in the weekly newsletter from our church:
PRAYER FOR ALEX
Over 13 years ago Alex Owens, now 25, was diagnosed with a rare and little known disorder. Over those same years, he has been to numerous doctors about the intense pain he lives with daily. No method of treatment tried nor the most powerful medicines on the market have reduced his pain. At this time all known forms of treatment have been exhausted. As you can imagine, extreme pain 24 hours a day and seven days a week takes its toll on Alex and his family.
If you would like to be a part of those who stand in the gap and pray for Alex and the move of the Holy Spirit in his circumstances, there will be a time of prayer set aside for him in the sanctuary each Tuesday from 5-6 PM. This prayer time will begin on Tuesday, October 23.
I wanted to share this with you, my friends, because I believe so fervently in the power of prayer. This prayer time comes at the request of a dear family friend and our new pastor. We believe God can work a miracle, if He so chooses. We also believe that God is working in our lives at all times and that He will continue to sustain us. I humbly ask for your prayers also. And I thank you with all my heart.
The website for our church is undergoing some changes right now and is in the process of being updated. Visit us there at www.sbcdothan.org.
The most characteristic symptom of cerebellar degeneration is a wide-legged, unsteady, lurching walk, usually accompanied by a back and forth tremor in the trunk of the body. Other symptoms include slow, unsteady and jerky movement of the arms or legs, slowed and slurred speech, and nystagmus — rapid, small movements of the eyes.
WHAT IS IT?
Cerebellar degeneration is a disease process in which neurons in the cerebellum – the area of the brain that controls muscle coordination and balance – deteriorate and die. Diseases that cause cerebellar degeneration can also involve areas of the brain that connect the cerebellum to the spinal cord, such as the medulla oblongata, the cerebral cortex, and the brain stem. Cerebellar degeneration is most often the result of inherited genetic mutations that alter the normal production of specific proteins that are necessary for the survival of neurons.
The severe pain that Alex experiences is not usually a condition associated with Cerebellar Atrophy. We do not know , and doctors can not pinpoint why he is having such pain. He does have the issue of migraine, but that pain is differentiated from the constant pain that is unrelenting.
Alex was the easiest to raise of my 3 boys. This was due to his pleasant disposition and eagerness to please. He enjoyed reading and never minded playing alone. He could entertain himself for hours. He never was as agile and quick as his brothers, and he sometimes seemed a little clumsy, but there was never any noticeable problem that would cause any concern. He began having migraines at about age 4, and we found that his vision was very poor and he was wearing glasses at age 5. There was some concern, I remember, that the doctors were unable to properly correct his vision to 20/20 with glasses, but they did not seem too concerned about that.
One day, when he was in the 8th grade, one of his teachers called me and said I needed to come to the school and pick up Alex. She said that he was bumping into things and said he was seeing double. He was not complaining at all when he went to school. I picked him up and went directly to his pediatrician, who sent us straight to the hospital for a CT scan. Nothing showed up. The next day we were in Birmingham, at Children’s hospital for an MRI. This is when the damage showed up. The doctor said that part of his cerebellum was gone. He said he must have had a severe infection or virus to cause it. Then he sent us home. Nothing else…just…go home. We did, and the next morning I was back in the pediatrician’s office…asking “what now?” He could not walk with out aide and could not see because of double vision. Our Dr. here sent us back to Birmingham. We went first to a pediatric opthamologists, who fixed prisms for his glasses so he could see better. Then, we went back to CHA, and saw a different neurologist who explained a little about the process of cerebellar degeneration or atrophy. He gave us a medicine to try to help alleviate the symptoms, but it did not help.
This was the beginning of our nightmare. Our doctor here found the leading specialist in Cerebellar Atrophy, and sent us to see him. He was at the University of Michigan. We found out the most info here. They did a battery of tests here that told us more of what we were dealing with. We learned what to look for and what to expect. We were told that the disease could progress, or could stop where it was. It could go into remission for a while, only to start up again later. But, no treatment.
At first, Alex was able to continue with school, but soon the pain began to get so bad, he could not keep up. He tired easily and there was another problem with his eyes. He began having nystagmus, which is a constant jumping of the eye. He began having trouble seeing and reading.
We went to a pediatric pain specialist in Boston, who came highly recommended. He did many tests and finally told Alex there was nothing he could do. When Alex mentioned how bad his eyes were, he suggested we see a friend of his who happened to be an opthamologist. We went the next day, and for the first time, he and his associate were able to make some glasses that enabled Alex to have decent vision again. He said he had only seen this kind of nystagmus one other time in his practice. It is extremely rare.
We saw a doctor at the University of Mississippi who is a researcher into cerebellar atrophy. He began testing Alex for all the differing causes of the condition. Every test turned up negative. This led him to believe that we were not dealing with an inherited type, but just a gene mutation. Not that that is any better. We still do not know why or what the exact cause is.
So, our life consists of Alex seeing a pain management specialist who tries to keep him comfortable with narcotics. If we hear of any possibility of treatment, we seek it out. We have gone to doctors all across this country. But, no one knows enough to help. They all send us away, and can do nothing. But, still we search, and we will continue to search. We will continue to track down every lead. And, Lord willing, we will find some help for him.
As a matter of clarification…it is the severe pain that keeps Alex totally homebound. Even though he has to walk with the aide of a cane, he is not handicapped by this enough to be a shut in. He would love to further his education, he would love to be able to just get out and go to the bookstore. He is incapacitated by the level of pain that he faces everyday…unrelenting and constant.
We pray…we deal daily…we wait on God.
Sunday, Dec 16, 2007 –
PRAYER REMAINS A PART OF WIREGRASS CULTURE
By Lance Griffin
Tonight, hundreds ‚Äî maybe more than a thousand ‚Äî will gather around a Dothan home to pray for Becky Clark, who has been battling an ongoing illness for many years.
Some will light candles, some will hold hands. They will ask God for healing, comfort and peace.
Tuesday night, a group of people will gather at Southside Baptist Church to pray for Alex Owens, who suffers from a rare disease characterized by intense pain, much of which can‚Äôt be treated.
They will ask God for a cure, for relief from the pain, and for strength for the family.
For churches and families throughout the Wiregrass, prayer is an essential part of daily life. Whether it‚Äôs a brief word of thanks before a meal, or an organized city-wide prayer vigil for a sick loved one, prayer is woven into the fabric of everyday living.
But what happens when prayers go unanswered? For some, it can be a faith-shaking event to pray for the healing of a sick loved one, only to see their health decline even more.
Others, however, believe no prayer goes unanswered, that our human minds are unable to comprehend the decisions of God.
That‚Äôs what Tina Davis believes. The Southside Baptist Church member said prayer is not as much about getting what we want as it is relating to God. Davis helped organize the prayer meeting for Owens. Anywhere from six to 20 members have been meeting every Tuesday night since October. Davis said they stay until they get a sense of peace from God that their prayer time is over.
‚ÄúWhereas our reason for meeting is to ask God to move in (Alex‚Äôs) circumstances, the purpose behind the meeting is to acknowledge who God is,‚Äù Davis said. ‚ÄúIt’s about God‚Äôs will, his purpose in Alex’s life, his love for Alex. It’s about appealing to Him as our father.‚Äù
Scores of scientific studies have been conducted on intercessory prayer. While not all of the studies have shown measurable positive results, many have. A 2000 study that appeared in the Southern Medical Journal focused on 40 patients with rheumatoid arthritis. Nineteen of the 40 received in-person intercessory prayer for 6 months. The patients were studied one year later, and doctors found more improvement from those who had been prayed for directly. Another Southern Medical Journal study on 393 coronary care patients in 1988 showed that those prayed for showed more significant signs of improvement.
Davis, who has been a Christian for many years, said the answers to prayer are really secondary to the act of praying.
‚ÄúBut I think the secret to prayer is not to achieve our will, but to submit to his will and not box him in,‚Äù Davis said. ‚ÄúGod is in charge. Ultimately, you can not box God in. If you do, you make him smaller than he is capable of being. And we want something God-sized to happen in Alex’s life. And if we want that, then we have to pray an open-ended prayer.‚Äù
Davis said she doesn‚Äôt understand it all. Rev. Johnny Fain, pastor of First Baptist Church of Dothan, said he doesn‚Äôt fully understand it either.
‚ÄúI accept who God is and that he has a plan so much higher than mine,‚Äù said Fain, who helped organize tonight‚Äôs prayer vigil/walk for Clark. ‚ÄúGod sees so much farther and how everything relates to something else. All we see is the physical and the here-and-now.‚Äù
Fain and Becky Clark‚Äôs husband, Ken Clark, have met each Wednesday morning for the past four years for prayer. He said the two have developed a tight bond, due in part to their time spent in prayer together.
Fain said the power of prayer has already been revealed during Clark‚Äôs illness.
‚ÄúThis is something that has been going for 15 years,‚Äù Fain said. ‚ÄúGod‚Äôs grace and power has been so real. Really, this is kind of what Christmas is about, cheering people and blessing people.‚Äù
THE DOTHAN EAGLE….12/16/07
I was up quite a bit last night with Alex and did not get much sleep. So, being awake, anyway, I went outside to get the morning paper. I never do that. Don likes to get the paper and read it before I mess it all up. He likes it still in its
tidy shape. But, this morning, something made me go ahead and get it before he even got up. I let the dog out and sat down in the sunroom to peruse the front page and check out the sales flyers. The headline of this article caught my eye and I started reading. Imagine my surprise when Alex’s name jumped off the page. The lady they talked about in the article is a friend of mine from another church, and she is suffering greatly. Please pray for her. We went to school together, and I have taught all her children. They are grown and married and have all come home to be with her.
Tina Davis, who is quoted in this article, is a dear, dear friend. She is one of those people who can make you better by just being around her. She is a source of much wisdom and sensibility in my life. She loves the Lord, and she loves my family. She is especially close to Alex and he loves her, too. Tina is the kind of friend that I can say anything to…I can cry or fuss or yell or say nothing. She doesn’t judge…she just listens. If something needs to be said, she’ll say it. If not, she’s just there. And sometimes all we need is for someone to just be there.
I know God put her into my life…and I thank Him for blessing me with her.
Alex’s continues to suffer in pain most every day. There is no improvement, but not much of a decline. So, Thank you, God for that. There are a few new treatments we are looking into for some pain relief. His doctor is working on that now. As for us, we wait and pray and know God is in control! He is mighty and powerful and He sees what we cannot. Our trust and faith is in Him!