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.
I am a Christian woman who has survived many years on the planet. God has blessed me with a wonderful family: husband, 3 sons, a dear DIL, and a precious grandson. I also have dear friends to keep me inspired. I am an artist of sorts and am finding my way through the great blessing of retirement. I recently retired after 20 years as a music teacher. Life is good!