Re: Dealing with the fear of the unknown/AnnMarie

[Guest guest]

AnnMarie,

It is so hard to get anyone to understand the nature of the beast

that is mito. Most people only see my child on her good days. They

don't see her with a fever of 105 and steps away from dying when she

is septic. they don't see her screaming in pain the day after her

blood transfusion with some weird reaction that no one can explain.

They don't see her on the floor crying and not knowing why-autism.

They see her playing and laughing.

They don't understand what it is like to hear your childs voice in

the morning from down the hall and thanking God that he gave you

another day. Another day to do meds, chelation, deal with fits,

throwing up, pain, blood tests, fevers, therapists, doctors and

school IEPs. But you do thank God. Every day I have with no sleep,

and pure exhaustion is another day that I have her.

We don't know how long we will have her. She wasn't expected to

live past 2 and now she is four! I feel sorry for myself. I break

down and crash. We are mothers, but we are human. It took some

people on this group to remind me of this during my last break down.

We have had many times that she is doing so well and you almost

forget what she has. That she is not " Normal " . Then there is a fever

and the ER and you are rudely awoken from your dream and thrust into

the nightmare full force. Unless you've been there, you just can't

understand. My friends (outside of the mito community) just

say, " How do you do it? I couldn't do it. " How could you not?

Our thankyous come in the forms of hugs from our kids and the I

wuv yous that they occasionaly say. From seeing them tackle tasks

that " they " said would never happen. our children are strong, and

even when we break down, we are strong too! For we get up every day

even though we know what may lie ahead. We change the diapers of our

older children, and give the meds through the gtube that we all now

value so much. we watch our children sleep for 18 hrs a day and pray

they will be okay tomorrow. We fight with teachers, school districs

the insurance companies and the state- cause we are strong.

We don't ask for thanks. We have our thanks. We ask for compassion

from our community but don't always get it. WE ask for help, but

don't always get it. But we go on. Our fear of the unknown is there

every day we breathe. There are no answers but every day we get to

do what we do, is another day we have them.

Please cry and feel sorry for yourself. We are here for you.

anything you need, we are here.

Dawn

[Guest guest]

Dawn,

You hit the target

exactly on what it is like to live the fear of the unknown. Every word you said

I can relate to. Sometimes, people see us as “strong”. That is because

they don’t see the breakdowns, tears, anger, sadness, or constant anxiety

we live with when we hear a cough, a simple sneeze, or a “my stomach

hurts”. Oooh what parents of healthy children take for granted that we

treasure. Like you said, after having lost my older daughter and knowing Leanna

has mito, every

morning when she wakes up before me and WALKS to my room, I thank God for that

day, but live in constant fear of tomorrow. It is amazing how well our children

appear to others and how quickly they Lose it all in days. Mito has got to be the most vicious disease

because it is so deceiving. When I think of Samya, my heart breaks . She lived

her entire 8 years without us knowing what her body was fighting, how hard it

was fighting. There was a horrible struggle going on inside, and yet we never

had a clue. We treated her like normal children and just thought she was a lazy

child. She lived her life trying to be normal until that battle was lost and

reality set in. My husband ran the 26 mile LA marathon in March 2002. samya was

so proud of her daddy the next day and wore his pin and his hat to school and

told everyone that her daddy ran the marathon. That December when Samya died

and we found out what she had her entire life, my husband said he ran a 26 mile

marathon with a fully functioning 100% energy efficient body for one day. Samya

had run a marathon every day of her life for 8 and a half years on less than

10% energy efficiency. What was his accomplishment compared to his. Nothing.

And yet, Samya was so proud of him. It hurts so much when you realize what a

fighter and a hero your child was only when they are dead, and yet do not

recognize them when they are alive. Samya, at age 7 ran 10 laps (1 mile) at her

school’s jogathon. That was a marathon in itself. I did not have a clue

then what she had accomplished. I agree that only parents in

our shoes understand our life struggle. I feel sorry for myself a lot and I

have every right. None of us did a darn thing to deserve to see our precious

children suffer. I see many parents that do not even deserve to have children

and yet they do and they are perfectly healthy. My theory on that is that God

looks after those children because he knows their parents are not. I have seen

that so many times. It makes me angry sometimes because I think, “Why am

I so capable”, Maybe if I was a terrible parent too self absorbed to care

about my kids, they would have been healthy. But then I know that is anger and

that jelalousy monster taking over. I still reserve the right to

feel that way. I know fathers , who have healthy intelligent kids, who are out

there cheating on their wives instead of enjoying there children. Then I think

of my poor husband, a faithful man with integrity in ever bone in his body,

that lost his beloved child and would have given up the world for her.

Suhad Haddad -- Mom to Samya (Died 12-10-02 of Leigh's Synd.) &

Leanna with same disease.

Samya's Memorial Site: www.Samya.org

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: thefiveofus02

Sent: Wednesday, April 28, 2004

7:27 AM

To: Mito

Subject: Re: Dealing with the fear of the

unknown/AnnMarie

AnnMarie,

It is so hard to get anyone to understand

the nature of the beast

that is mito.

Most people only see my child on her good days. They

don't see her with a fever of 105 and steps away

from dying when she

is septic. they don't see her screaming in pain

the day after her

blood transfusion with some weird reaction

that no one can explain.

They don't see her on the floor crying and not

knowing why-autism.

They see her playing and laughing.

They don't understand what it is like to

hear your childs voice in

the morning from down the hall and thanking God

that he gave you

another day. Another day to do meds, chelation,

deal with fits,

throwing up, pain, blood tests, fevers,

therapists, doctors and

school IEPs. But you do thank God. Every day I

have with no sleep,

and pure exhaustion is another day that I have

her.

We don't know how long we will have her.

She wasn't expected to

live past 2 and now she is four! I feel sorry for

myself. I break

down and crash. We are mothers, but we are human.

It took some

people on this group to remind me of this during

my last break down.

We have had many times that she is doing so well

and you almost

forget what she has. That she is not

" Normal " . Then there is a fever

and the ER and you are rudely awoken from your

dream and thrust into

the nightmare full force. Unless you've been

there, you just can't

understand. My friends (outside of the mito community) just

say, " How do you do it? I couldn't do

it. " How could you not?

Our thankyous come in the forms of

hugs from our kids and the I

wuv yous that they occasionaly say. From seeing

them tackle tasks

that " they " said would never happen. our

children are strong, and

even when we break down, we are strong too! For we

get up every day

even though we know what may lie ahead. We change

the diapers of our

older children, and give the meds through the

gtube that we all now

value so much. we watch our children sleep for 18

hrs a day and pray

they will be okay tomorrow. We fight with

teachers, school districs

the insurance companies and the state- cause we

are strong.

We don't ask for thanks. We have our

thanks. We ask for compassion

from our community but don't always get it. WE ask

for help, but

don't always get it. But we go on. Our fear of the

unknown is there

every day we breathe. There are no answers but

every day we get to

do what we do, is another day we have them.

Please cry and feel sorry for yourself. We

are here for you.

anything you need, we are here.

Dawn

Please

contact mito-owner with any problems or questions.