When my oldest son was 13 years old.... my husband and i began noticing some changes taking place in the way he was walking. At this point in our life... I had another son who was 5 years old... i had graduated from nursing school in 1992, my husband worked changing truck tires and semi tires for a living and loved his job and we were just starting to get on our feet financially when we noticed bruises on the older childs legs.. I called his teacher, i thought someone at school was picking on him. I was told by his teacher that my son had been falling down the stairs. We immediately got an appointment with our local dr who did not know what could be wrong. He said my son had high arches.. and he knew nothing more.. we went to several other drs. Finally someone told us about the Shriners hospital and we began taking our son there. It was a 4 hr drive for us and we had to wait hours to be seen. In the course of 5 years, i can't even tell you how many different surgeries my son had. They cut the tendons in the back of his legs, they took bone out of the left foot and placed a staple in his heel, he has had pins in his toes, trying to keep his feet and toes straight so he could walk. He most recently had a 12 inch rod placed in his left leg in an attempt to keep the leg straight. We were told back when he was 13, that he had inherited a disease from his dad. a nerve conduction study was done on both my husband and my son and that is how this diagnosis was established of charcot marie tooth. My husband had never heard of it and neither had i ..It is a slowly progressive disease... or is supposed to be, but in my sons case it was moving so fast we were told he also had a second autoimmune nerve disease. I felt so guilty, i thought i must have ignored him or put in so many hours being concerned with work that i did not see this disease until it smacked our family in the face. My husband felt guilt too.. here he had passed on a disease that he had no knowledge of...this is just one long ongoing dilemma that our family has had to face. In the height of my depression, I became barely able to care for myself, my weight plummeted over 500 lbs, on april 13, 1998 , i got a phone call telling me that my husband had been crushed underneath a tractor 20 miles outside of our rural town , out in the country. I was told to prepare for the worst. I called someone to come help me get shoes on and get to the hospital to see him. I went in and saw a very swollen man, purple all over, he had a breathing tube in and could not talk to me. I tried to remain calm, and held his hand and joking told him he sure picked a great way to spend his vacation ( as he had vacation time coming up soon). He was transferred from our hospital to the city. No one could tell me just how extensive his injuries were. At Liberty, Mo hospital the drs did an exploratory surgery and found all his right ribs to be broken, his diaphragm busted and his intestines were shoved up into his right rib cage, he had a broken right pelvis, three vertrebrae in his back were broken, he had a laceration on his liver and a bruised kidney.. and thank god he was alive.. through all this... he was alive. He remained on a respirator for 17 days, then was able to talk and begin a slow recovery. He got to come home after a month in the hospital. Then he began physical therapy as soon as his back healed enough so he could. We went through several years of living on $745.00 for a family of four. We also endured a nasty battle with the insurance companies and workmens compensation. We endured...about all we ended up with is each other. He becomes very upset when he sees a lawyer on tv telling how he can help you do and get this or that. My husband was left with only his life and his battered body... and i tell him every day.. him being here is the most important thing. Money would not have hurt either though.. we were hoping to be able to stablize the old house we live in. We had rain coming in 3 places when he did get a little bit of a settlement. We had enough money to put a roof on our home, buy a furnace and an air conditioner.. but not enough to fix the foundation. My oldest son graduated the following year. He did not get to participate in the graduation exercises because i did not have the money for the cap and gown, no money for invitations or anything. My son did not even attend his graduation. I feel so guilty to this day that i could not provide for him. At that time though, i could not help myself. I had gained so much weight... everything that stressed me out, i ate.. i had no one to talk to .. i myself was a mess too. In 2003, I had gastric bypass surgery. I had lost down to 238 lbs and went back to work in 2005, then had to stop due to complications i was having due to the hanging skin on my abdomen, and i had no means to fix it. In 2007, my baby graduated from high school. He has went on to college, I am not able to help him financially, like most other Drake parents do..but he won awards for singing and acting while in high school and he did get a nice scholarship from Drake University in Des Moines, Iowa. He has to take out student loans and he works..He is 19 now and so far has no sign of charcot marie tooth disease and I pray he never will. The oldest son is 28 now.. he had a pacemaker put in last year and the 12 inch rod to the left leg last year. We helped him move into the handicapped apartments here in our town. His feet and legs and still turning on him despite medical intervention. There is no cure for this disease and now my husband at age 54 is showing signs of the disease. He is having muscle weakness, fatigue, he stumbles sometimes when he walks. I feel pressured to hurry and find a way to return to work because i don't know how much longer our home will last.. we have a bad foundation, leaky basement, with a sump pump. .. Thank god for " great stuff" .. that we use to fill the cracks.. but it is getting worse. The basement steps are steep and my husband has to go down there to change the furnace filters.....so really i do not know,..... if i am still greiving from all the turns our family has taken since 1995.... I don't know...I cry some everyday and wonder what in the world will become of us.. with our health. I really just don't know anymore. I want to hope and believe the future will be better.
Reading other posts helps me to realize that other people have problems in life too. Some times I feel i get my share and other peoples share of it too but then i have to stop and make myself think of all the blessings, the miracles... that has happened. And when i do.. it makes it all just a bit easier to cope with.
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