Re: The fun just keeps on coming //not mito related,really

[Guest guest]

Kim,

I totally know how it feels to feel like " I CAN'T DO THIS! GOD must have made a

mistake in giving all this to me! " ...

..... I hope you can find the right person to test your daughter.

Anne R

[Guest guest]

KIM,

I feel that way just about every day.Keep your chin up. We

understand, really. I have one with PDD, OCD and I think my other is

showing tendencies. Scares me to death. how will I deal? How can we

not? We just will.

Dawn

[Guest guest]

Dear Kim,

I am so sorry about how frustrated

you are feeling and I just want you to know you are not alone. I often feel

like that and I think it is because with mito, so many different things go on

at the same time and it seems like there are not enough hours in a day to begin

to deal with them. There were times I felt like I spent the whole day dealing

with medical issues and found small bits of time just to eat a mea or grab a

shower before it was back to the never ending drawing board of dealing with one

issue while waiting for the next punch in the stomach. I literally felt like

every time a new medical problem was added or a new assessment was needed for a

new problem I was punched in the stomach and YES I felt like this is a mistake because

GOD I CANNOT DO IT but somehow we do. While Samya was dying in the hospital and

I was home every night at 10 pm so leanna would sleep I had the worst thing

happen.I lived at the hospital all day but had to come home because Leanna

would not sleep at anyone’s house. Well, the minute she put her head down

and I put my head on my pillow so I can cry until I start another wonderful day

in the hospital at 8 am, Leanna would cough all night and vomit because of her

asthma. This went on all 33 days of Samya’s hospitalization. Me and my

husband were at our wits end, yelling at God as to why he was doing this. I got

to the point where I really wanted to commit suicide, but I just did not have

time to plan it (no pun intended). Can you imagine dealing with one child dying

and then coming home to one coughing and vomiting all night. I screamed at God,

“WHERE IS YOUR MERCY LORD< WHERE”. That was probably the lowest

I ever felt. To top it all off, the DAY AFTER Samya died, We finally took

Leanna to the doctor for the cough and spent the week after her death doing

round the clock asthma treatments. I remember calling for the appointment saying

“Samya died yesterday and by the way I need to bring Leanna in today”.

I remember how sorry for me the doctor was. It was the first doctor’s

appointment I ever went to where my husband was with me because I could not do

it alone anymore. I remember telling my husband that we have got to be the only

people in the world that have to take their child to a doctor the day after one

dies and we still had a funeral to plan. My point is YES I have felt like you

do now. I even told God,” Go ahead , Lord, bring it on. What else do you

want to throw at me. What other surprises do you have in store?” I cannot

express the frustration or desperation I felt. Here I am and 2 years later I

have managed somehow to go on and I still have my faith. I do not know how this

response turned into a vent from me and I am sorry but I guess reading your

e-maill brought back all those feelings and I feel your pain. I wish I could

give you a BIG HUG and I am so sorry. Hang in there. :Life is not fair.

God bless you,

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

Leanna with same disease.

Samya's Memorial Site: www.samyahaddad.com/.org/.net

Email:

Suhad1970@...

Alt Email:

Suhad@...

AiM Chat: Suhad1970

From: Kim

Sent: Wednesday, January 12, 2005

10:23 PM

To: Mito

Subject:

The fun just keeps on coming //not mito

related,really

Well,,,it has been one thing after another around here. It seems like

the emotional

roller coaster,just never ends !

I have been trying to pull myself out of my slump,this past

week. Nobody around me really understands,,,but I'm sure ya'll will. I took Katelyn

for her psychiatrist visit last week ( she has been dx with Bipolar and OCD) I

had some concerns with some things,and asked if we could increase her OCD

meds,,since she is getting very rigid,in her way of thinking. Some examples

are,,,,we had a family reunion,and she didn't like any of the food,so I told

her to eat a snack,,then when it was over I would get her something to eat

,that she likes (she has become a VERY picky eater) Well,,she went bonkers !

She insisted that she couldn't eat a snack,before the meal,because that isn't

what you are suposed to do. You HAVE to eat the meal first ! It was a very

extreme reaction,,,and it took a long time to calm her down. She just kept

saying " Its not right,,its not right " This kind of thing is

happening more and more,,,she is just getting impossible to live

with,,everything HAS to be just so. She can't stand for anyone to touch

anything in her room,,and has even started doing her own laundry,,because I

don't do it " right " . These things,,along with her constant rocking

back and forth,,and very very poor social skills,and lack of being able to make

ANY kind of small talk,,,has led the psychiatrist to think that she might have

something along the autism spectrum. Now,,that isn't really such a big

shock,because I have thought it for a while,,,but hearing a Dr say it,,was very

shocking ! So,,now I have the fun task of trying to find someone to do some

testing on her,,and we are throwing in some testing to see if she has a

learning disability,,just for the heck of it :/

On the same day,,I got the paper work back from Social

Security disability,(Logan has a review every

couple of years),and it said that they had determined that Logan was still disabled. That

one line was just like a punch in the stomach. I know,,that he

recieves SSI,because they consider him disabled,,but reading it,,,I can't

explain it,,it just made me so sad !

I just feel like,,I can't be a mom with 2 autistic kids !

I'm not good at this.Do ya'll ever feel like saying " I can't handle this

anymore,,I'm not the right one for this job ! Somebody goofed,,and thinks I can

take all this,,and I CAN'T !! "

Of course,,I can,,,and I will cause there is no one

else,,but it sure seems to be too much sometimes !

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital

myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY

__________________________________________________

[Guest guest]

I am sorry things haven't been going well lately. This is one area that can

be bothersome. Asenath has some of the same issues but not as bad as your

daughter. She does get upset easily when something is done differently than

she thinks it should be and her therapists and docs think she does have some

autistic behaviors. I hope you are able to get some help for her soon.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org to see

a photo look into what Mito looks like

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, global delays, asthma, cyclic vomiting,

bladder issues, wheelchair for distances, eye issues, autistic behaviors,

gastric emptying issues...

Zipporrah (14 months) Mito, strokes, neuro-motor planning dys., SID, GERD,

dysphasia, 100% G-tube fed, speech delays, extreme fatigue, excessive

phlegm, asthma, trach issues, aberrant subclavian artery, disautonomy,

hypertonicity, migraines, possible seizures, dumping syndrome, iron

deficiency, ...

Luke (16), Leah (14), Rachael (13), Isaac (10), Tirzah (8), Kezia (4), &

Marquis (3), Joey & (12 months) (some with Mito symptoms)

The fun just keeps on coming //not mito related,really

> Well,,,it has been one thing after another around here. It seems like the

> emotional roller coaster,just never ends !

> I have been trying to pull myself out of my slump,this past week. Nobody

> around me really understands,,,but I'm sure ya'll will. I took Katelyn for

> her psychiatrist visit last week ( she has been dx with Bipolar and OCD) I

> had some concerns with some things,and asked if we could increase her OCD

> meds,,since she is getting very rigid,in her way of thinking. Some

> examples are,,,,we had a family reunion,and she didn't like any of the

> food,so I told her to eat a snack,,then when it was over I would get her

> something to eat ,that she likes (she has become a VERY picky eater)

> Well,,she went bonkers ! She insisted that she couldn't eat a snack,before

> the meal,because that isn't what you are suposed to do. You HAVE to eat

> the meal first ! It was a very extreme reaction,,,and it took a long time

> to calm her down. She just kept saying " Its not right,,its not right "

> This kind of thing is happening more and more,,,she is just getting

> impossible to live with,,everything HAS to be just so. She

> can't stand for anyone to touch anything in her room,,and has even

> started doing her own laundry,,because I don't do it " right " . These

> things,,along with her constant rocking back and forth,,and very very poor

> social skills,and lack of being able to make ANY kind of small talk,,,has

> led the psychiatrist to think that she might have something along the

> autism spectrum. Now,,that isn't really such a big shock,because I have

> thought it for a while,,,but hearing a Dr say it,,was very shocking !

> So,,now I have the fun task of trying to find someone to do some testing

> on her,,and we are throwing in some testing to see if she has a learning

> disability,,just for the heck of it :/

> On the same day,,I got the paper work back from Social Security

> disability,(Logan has a review every couple of years),and it said that

> they had determined that Logan was still disabled. That one line was just

> like a punch in the stomach. I know,,that he recieves SSI,because they

> consider him disabled,,but reading it,,,I can't explain it,,it just made

> me so sad !

> I just feel like,,I can't be a mom with 2 autistic kids ! I'm not good

> at this.Do ya'll ever feel like saying " I can't handle this anymore,,I'm

> not the right one for this job ! Somebody goofed,,and thinks I can take

> all this,,and I CAN'T !! "

> Of course,,I can,,,and I will cause there is no one else,,but it sure

> seems to be too much sometimes !

>

>

>

>

> Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7

> Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and

> Ethan 5 and 100 % BOY

> __________________________________________________

>

[Guest guest]

Kim,

I think we all can relate. Some days you just want to run into the closet and stay there. Abigail is possible mito and I'm going on Wednesday to get the latest test results.

Abigail is legally blind so the other night she broke her only pair of glasses and I had to rush out and get them fixed after work at 8:30 p.m. and order another pair that we can use for backup because I just haven't had the time since her last eye apt. to order an extra pair.

We have a neurologist appointment on the 28th of this month. I can't wait to see what they have to say as every specialist Abigail meets finds a new problem.

In addition to all the other therapies she meets with the mobility instructor on Saturdays

All of her latest school review papers came in the mail and I sat down to read them the other night. Now I am concerned about her letter and number recognition her OT, her PT, her vision therapy and her newly added social therapy and should I continue to get her ready for braille.

I have been so fixated on the mito issues lately that I put the legally blind and school issues on the back burner. Now after reading all the school review information I am sad for her delays and her vision related problems. From one day to the next I am trying to focus on another problem that needs to be nurtured and "worked on". I get ready to lose my mind....

Then I remember the most important part....I am lucky to have my little girl, who cares about all the learning problems, the vision problems, the underlying health problems. I put all the papers to the side again, yes I'm ignoring them. I then get down on the floor with her and her sister and play and make them laugh. I can't fix anything, but I can live for the moment and enjoy my girls.

Kerry Dougherty

mother to Abigail 4 years (legally blind, possible mito) and Bridget, 2.5 years

Kim wrote:

Well,,,it has been one thing after another around here. It seems like the emotional roller coaster,just never ends !

I have been trying to pull myself out of my slump,this past week. Nobody around me really understands,,,but I'm sure ya'll will. I took Katelyn for her psychiatrist visit last week ( she has been dx with Bipolar and OCD) I had some concerns with some things,and asked if we could increase her OCD meds,,since she is getting very rigid,in her way of thinking. Some examples are,,,,we had a family reunion,and she didn't like any of the food,so I told her to eat a snack,,then when it was over I would get her something to eat ,that she likes (she has become a VERY picky eater) Well,,she went bonkers ! She insisted that she couldn't eat a snack,before the meal,because that isn't what you are suposed to do. You HAVE to eat the meal first ! It was a very extreme reaction,,,and it took a long time to calm her down. She just kept saying " Its not right,,its not right" This kind of thing is happening more and more,,,she is just getting impossible to live with,,everything HAS to

be just so. She can't stand for anyone to touch anything in her room,,and has even started doing her own laundry,,because I don't do it "right" . These things,,along with her constant rocking back and forth,,and very very poor social skills,and lack of being able to make ANY kind of small talk,,,has led the psychiatrist to think that she might have something along the autism spectrum. Now,,that isn't really such a big shock,because I have thought it for a while,,,but hearing a Dr say it,,was very shocking ! So,,now I have the fun task of trying to find someone to do some testing on her,,and we are throwing in some testing to see if she has a learning disability,,just for the heck of it :/

On the same day,,I got the paper work back from Social Security disability,(Logan has a review every couple of years),and it said that they had determined that Logan was still disabled. That one line was just like a punch in the stomach. I know,,that he recieves SSI,because they consider him disabled,,but reading it,,,I can't explain it,,it just made me so sad !

I just feel like,,I can't be a mom with 2 autistic kids ! I'm not good at this.Do ya'll ever feel like saying " I can't handle this anymore,,I'm not the right one for this job ! Somebody goofed,,and thinks I can take all this,,and I CAN'T !! "

Of course,,I can,,,and I will cause there is no one else,,but it sure seems to be too much sometimes !

Kim mom to Meaghan 15 ~~Katelyn 12 Bipolar,and OCD ~~ Logan 7 Autism,congenital myopathy,possible mitochondrial disease,and JRA ~~ and Ethan 5 and 100 % BOY

__________________________________________________