Ann Story part #4

[Guest guest]

oldest sister that she was the lucky one, her children didn't live long enough for her to experience the day in and day out hell I felt at the time, I was living in. I was very overwhelmed at the amount people seemed to think I could and should handle from doctors, family and friends. I have been told that many times people knew I needed help, but they just didn't know how to help me. That our situation was very overwhelming and intimidating to outside people. I can say I truly found out what the meaning of a true friend is during this time. I had many people who I thought to be friends walk away from us because our life style was too stressful and they couldn't handle the daily stress we lived. This was extremely hurtful, but there was nothing I could do about it. My true friends stayed around through thick and thin and I had to be grateful for that.

My stress level was growing, as my son had begun to have huge outbursts of fits of rage. He would explode for no apparent reason, often times, totally unprovoked and he could clear out his room in a rage. He was so strong during these outbursts that it was getting to where I could not hold on to him. I was afraid he was going to hurt one of the girls or myself. Several times I had to call my husband home from work to help me with him, which put my husbands job in jeopardy. We were told from the behaviorist doctor that we were sent to, that we just needed to be better parents and set more boundaries for him and he would be fine. We were the problem not the child himself. This did not set well with us, and even though we knew this person to be totally wrong, like good parents we followed this persons suggestions. It made absolutely no positive change in him, in fact, it only made his outbursts more frequent and dangerous to his sisters and myself as he is a big boy. My heart ached for him because after a "fit" he would come and curl up in my lap and cry telling me he didn't want to be a bad boy. I would just hold him and tell him I knew he was not a bad boy and that we would find a doctor to help us soon. So we abandoned that doctor and went back to the Mito doc who then put him on several different meds and landed finally on Amitriptaline, and Celexa. Our wonder drugs! Our household had finally started to settle down some, his fits of rage all but stopped with a very few break throughs .

By this point my nerves and patients for certain doctors was wearing very thin, and I was having a very difficult time with remaining calm with any doctor who did not want to listen to what I was saying about the children's symptoms. I knew that the genetics doctor we had was on our side, but he too was wearing thin with all the problems we were having with the outside specialty doctors we were having to deal with. He as well as his staff continued to encourage me and help me with my anger issues each and every time the children, mostly my oldest daughter had to be hospitalized. I dreaded hospitalizations and I am convinced so did he. It never failed something major would go wrong due to a staff error with our kids. I began to see a counselor at this time to help me deal with all the stress, frustration, grief and flat exhaustion I was experiencing. My counselor at the time could not believe all that we had survived through. I was dealing with so much at the time I couldn't believe I was still standing.

I remember one night that I had my oldest vomiting everywhere, she was in a cyclic vomiting cycle, and I mean there was vomit everywhere, on me included, my son decided to have a melt down and started raging over the vomit everywhere, and my youngest was crying and wanting to be held because she was having a bad migraine. My husband was at work. He works nights and I work days so a parent is always available for the kids. I was already tired from teaching a special education class all day. I sat myself down in the middle of the living room floor and just cried. I wasn't sure I could go on anymore! I had called home for someone to come and help me, and no one could come at the time. I felt so alone! I managed to pull myself together, called a friend who came over to help me clean up the vomit everywhere in my house, and got everything back under control again for that night anyway. I decided I just needed to put one foot in front of the other one step at a time and deal with all that was going on. These were my kids and my responsibility. Our family crisis was just that, ours and I couldn't depend on others to bail me out. I pretty much live by the one foot in front of the other rule now. If things seem to be too much, I just need to start moving through it. That doesn't mean I haven't had other moments of crisis though at all. But, I have learned to walk through them better. My Christian faith carried me through many times I have no idea how I made it.

Our daughter had been quite ill for a while and it was suggested that we contact Make A Wish Foundation as her prognosis at that time was unsure. She had the most wonderful wish granter and she choose to go to Walt Disney World. Make a Wish sent us to a fantastic place called Give Kids The World. The place was absolutely incredible! We spent 10 days there. The kids were all treated like little princess's and my son was convinced he was a king! While there, our daughter had a reaction to the heat and humidity, and ended up at the hospital. Upon her return to Give Kids The World, Poppins was waiting to ride the Merry Go Round with her! Someone had let them know that was her favorite Disney Character at the time, and she was there for her! I will never forget poor " Poppins" she rode the carousal with her for over an hour, just round and round and round. Bless that poor girl! Our daughter was in heaven! It gave me a chance to get myself together after being scared from being so far away from home and her doctors, with yet another new symptom. It was an absolutely wonderful thing that Make A Wish did for our family. With all the medical bills, a trip like that is just not in our vocabulary then or now. Shortly after that was awarded a trip by the local Sheriffs department to go to Sea World on a train. He loves trains! While there he fed the sharks, got to actually pet the Killer Whales,( Mom was terrified the entire time and knew he was going to be some killer whales lunch with one big ol bite, but he absolutely loved it!) had dinner with Shamu and a whole lot of other surprises. We were so grateful for the break in our crazy world! Although these trips had a huge amount of stress connected to them, it was a different kind of stress and a much needed rest from the crazy day to day issues we had been living with for so long.

I invited my sister who I believed was having Mitochondrial problems as well as her children, to the next Mitochondrial Symposium in Cleveland. I did this for two reasons, I knew she was having a problem and the second more selfish reason was to try and get another family member educated in the Mito so I had a backup with the rest of the family. There we both were seen by one of the top Mitochondrial Doctors who is located at the Cleveland Clinic. We went through testing, including skin biopsies, where we both were diagnosed with Mito, which further backed up the California Mito Doctor's idea that we were dealing with a Maternally linked issue in our family. The Cleveland Mito Doctor decided that it was best to do a muscle biopsy on our oldest daughter as she was the one presenting with the most symptoms in the family, which had been an area of debate with other Mito/Genetic Drs she had been seeing. Was it worth the risk? We decided that we had to get an answer as to what was happening to the kids, and if this was the only way we would get it, then we had no choice. I returned home and waited for the call for when her biopsy could be done. When we got the call, we flew her out to Cleveland for the muscle biopsy, she also had a nerve biopsy done as well for the California Mito/Genetics doctor who was doing a research project at the time, as well as her G-Tube placed. The kids had been participating in a research program where he was actively researching the point mutations and looking for Length Heteroplasmy

At the very same time on the West coast back at home, Our son was having a long awaited surgery on his tonsils and adenoids and soft pallet repair. He was having obstructive apnea issues due to enlarged tonsils and adenoids. They were both called the same week for surgery on opposite sides of the country. Of course that seemed to be our luck. If we canceled either one, it would be a very long wait until they could be rescheduled. So we had 2 children under anesthesia on opposite sides of the country on the same day. It was extremely stressful, especially with knowing the risks of anesthesia and all. I had a very hard time knowing that my little boy was having surgery without his mommy being by his side. His dad was with him, but that wasn't mommy. I sat in Cleveland and cried and cried. Due to the time difference our daughter had gone into surgery first and was in surgery still when I knew my son would be going in. The kids did fairly well, but we the parents were totally trashed. I never want to do that again! One surgery at a time thank you and preferably on the same coast line!

Our youngest was having trouble with what we were told at the time was selective mutism. She would absolutely not talk to anyone at times. Sometimes including her daddy and I. Her preschool teachers were very concerned as she went through the entire day without saying one word. We had her tested for hearing and her vocal cords checked, all came out to be O.K. We were told that she was traumatized by all the uproar of our house and being left with people who were to her strangers all the time at the drop of a hat due to her brother and sister needing to be in the hospital. She was always left with good friends of ours, but they were different people often. I was really having a guilt trip on this one. What she was experiencing at the time I thought to be my fault. That I had not been a good enough Mom to her, and had not protected her from crawling inside herself to try and survive. I worked and worked with her to try and bring her to a comfort level with new things and new people. To this day although she finally did start to talk in public in the first grade although not much, she still struggles in new situations and is very shy until she has a chance to warm up.

Our oldest daughter now 9 years old, was beginning to have trouble with energy demand, lethargic all the time, constantly blue around her mouth, and constantly very pale. While in Cleveland for the biopsies, although we had been told by the local cardiologist that her holes in her heart were not causing her any trouble and to repair them would be more dangerous than what she was going through, we were told that it in fact was her heart that was causing her her current trouble. She was having too much oxygenated blood escape through the hole in her heart and was not getting what an already taxed system needed to survive. If they closed the hole she would be able to benefit from all the oxygenated blood she was pumping thus giving a struggling system more healthy blood to try and use. It made since to us, so we flew home and after much prayer and talking with both the California Mito/genetic specialist and the Cleveland Mito specialist, the Cardiac surgeons in Cleveland, family and friends we decided to go ahead with the surgery. Our church family raised some money to help with our expenses