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

havin

g 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