The way I feel...[long, vent]

[Guest guest]

Hi all,

I just need to write how I'm feeling about Asher's diagnosis of mito. Just to get the thoughts out of my head and on paper. If you don't want to read this now, please do not feel obligated.

When I first received the report, I felt relief b/c I knew we finally had "the" name of the beast that's been tormenting Ash. I've been reading more, contacting the mito expert who I hope will provide treatment/consultation, started him on the supplements, and tried to figure out what this means for our family. What's hard is that I don't really know what this means for Asher or our family and I know that the doctors don't even know. Dr. Shoffner told me that it was possible that Asher's form would be mild to moderate (which sounds good), but I wish I knew exactly what that meant. Will he go deaf by the time he's a teenager? Will he start to have seizures by the time he's 8? Will he grow to be an adult, to marry, to consider whether he should have his own children or adopt? Or will he die before then (I hate to even use those words, to have to use those words to describe the possibilities of my son's future!!)

I am optimistic most of the day. And I even feel grateful that Asher is doing as well as he is. But there are moments, like now, when the optimism fades and I feel scared. Tonight, like most nights, I read to Asher and then lay next to him in bed and sang to him and, as I looked into his beautiful blue eyes, I realized that, now, I'm aware, almost every moment that I'm with him, that he is so so so vulnerable. And I think my heart will break.

It is a lonely feeling to know that your child has a progressive illness that may progress quickly or slowly or, maybe, just maybe, as I hold onto that string of hope, be forever stopped by the "cocktail". Or by some wonderful scientific miracle of the next decade. How we hope!!

I also know that I am more aware of the beauty of each day with Asher. His smile, his kiss, the sweet smell of his hair and skin and his morning greeting of "I'm awake Mommy!". But they all have an edge tinged with sadness b/c I don't want to lose these moments and, yet, I do not have the power to stop time nor the power to cure my son.

I don't want this for my son. And I don't have any choice. And I'm so so sad.

I do know that I'm not alone.

Anne R - mother to Asher (3 - oxphos defect, Complex III and possible Complex I, - and a beautiful little boy who loves life!) and to Sam (7 - primary immune deficiency, a great, happy, smart boy who likes to tell me facts about the solar system and light waves)

[Guest guest]

Hang in there. I can completely relate to your feelings. I remember right after Gracies diagnosis we were so happy to know what was wrong. Unfortunatly, I knew very little of this disease until after the diagnosis. I never had time to prepare myself for this. Anyways we are going on one year after the diagnosis and things are more positive. I see Grace improving and growing, although I realize one day it could stop. I still worrry about the future, but I know she is a fighter and she will continue to fight. I have come to grasps that she will always have to be carefull of practically everything, and will always take a ton of medications. I try not to think too far down the road, because we deal with her now. I pray she will be able to do everything she wants to do. If she cannot, I will try to help her live her dreams. I know this is hard for you now, but it will get better. I have felt many times that this disease comes along with a never ending ticket to an emotional rollercoaster. I also now completely understand the saying "That that does not kill me, can only make me stronger".

Best Wishes

[Guest guest]

Anne R,

I am glad that you know you are not alone. I have been going

through this with my baby ( 4) since the day she was born. We

didn't know if she would live for a day let alone a year.There are

some days that are really difficult and then others that we kind of

forget about it (as much as you can while doing tubefeedings and

many, many meds). We get lost in those great times of pretty good

health and then comes a fever and she is knocking at deaths door. It

really hits you in the face! For a while I felt I couldn't even

enjoy the good becuase I didn't want to get to comfortable. I know

what is around the corner when I relax too much.

What does the future hold? Who knows? If I would have listened to

the docs when she was born we all would have given up and she

wouldn't be here today. It is so hard to live for only today, but

many of us have to. Try not lookng down the road too far. You really

don't know what may or may not happen. The docs don't either. It is

frustrating. Find doctors who believe, find friends who understand.

Both of those things are very hard but they will make all of the

differece in the world!

Hold onto Asher and love him as you do. Cry when you feel sad. but

love and laugh everyday! Find humor in the everyday things.

Sometimes you have to find humor in the illness itself. just

spent all night screaming for one reaosn or another.She stopped to

eat and drink. Stopped to brush her teeth and finally just exhausted

herslef and fell asleep. she wasn't in pain she was just p****d off

for some reason. I have to laugh or I'll go insane (okay, more

insane).

anyways, we are here for you! Dawn

[Guest guest]

I am so sorry you have to go through this, and that all of us have to

go through this, and that are children have to suffer. I share your

feelings every moment of every day. So few people understand, but

the people here do. This mito thing is so unpredictable. Someone

here once wrote that one day they think their child is cured, the

next they are sure they will die---that is so true, and so hard to

deal with. Mito is a beast as you called it, and it does torment,

and it is just not fair. One thing that this disease has done that

is good is that I cherish my children every minute of everyday.

Prayers for strength to you and your family.

Kris

Cole and Zack

> Hi all,

>

> I just need to write how I'm feeling about Asher's diagnosis of

mito. Just to

> get the thoughts out of my head and on paper. If you don't want to

read this

> now, please do not feel obligated.

>

> When I first received the report, I felt relief b/c I knew we

finally had

> " the " name of the beast that's been tormenting Ash. I've been

reading more,

> contacting the mito expert who I hope will provide

treatment/consultation, started

> him on the supplements, and tried to figure out what this means for

our

> family. What's hard is that I don't really know what this means for

Asher or our

> family and I know that the doctors don't even know. Dr. Shoffner

told me that it

> was possible that Asher's form would be mild to moderate (which

sounds good),

> but I wish I knew exactly what that meant. Will he go deaf by the

time he's a

> teenager? Will he start to have seizures by the time he's 8? Will

he grow to

> be an adult, to marry, to consider whether he should have his own

children or

> adopt? Or will he die before then (I hate to even use those words,

to have to

> use those words to describe the possibilities of my son's future!!)

>

> I am optimistic most of the day. And I even feel grateful that

Asher is doing

> as well as he is. But there are moments, like now, when the

optimism fades

> and I feel scared. Tonight, like most nights, I read to Asher and

then lay next

> to him in bed and sang to him and, as I looked into his beautiful

blue eyes, I

> realized that, now, I'm aware, almost every moment that I'm with

him, that he

> is so so so vulnerable. And I think my heart will break.

>

> It is a lonely feeling to know that your child has a progressive

illness that

> may progress quickly or slowly or, maybe, just maybe, as I hold

onto that

> string of hope, be forever stopped by the " cocktail " . Or by some

wonderful

> scientific miracle of the next decade. How we hope!!

>

> I also know that I am more aware of the beauty of each day with

Asher. His

> smile, his kiss, the sweet smell of his hair and skin and his

morning greeting

> of " I'm awake Mommy! " . But they all have an edge tinged with

sadness b/c I

> don't want to lose these moments and, yet, I do not have the power

to stop time

> nor the power to cure my son.

>

> I don't want this for my son. And I don't have any choice. And I'm

so so sad.

>

> I do know that I'm not alone.

>

> Anne R - mother to Asher (3 - oxphos defect, Complex III and

possible Complex

> I, - and a beautiful little boy who loves life!) and to Sam (7 -

primary

> immune deficiency, a great, happy, smart boy who likes to tell me

facts about the

> solar system and light waves)

[Guest guest]

Dear Anne,

I am glad you know you are not

alone in these feelings. It is not fair. I have already lost one child

and live daily with the almost inevitable possibility of losing my only other

child Leanna. Some days are good ( as good as it can be) and some days are

unbearable. There are times when I feel I can’t live like this another

day, and yet I do. Having lost one child, the heartache of what I know I

will endue once again if I lose another is evil. I feel sometimes like I am

walking through life (not living) on a cloud of constant disbelief waiting for

the bomb to go off so I can end this chapter in my life. Thank god for the hope

of an eternal life where all will be fair. FAIR. That is a funny word that has

no meaning to any of us in this group. None of us have been dealt a fair hand

in life, and anger is so often a part of life. Just this weekend, we took

Leanna to Las Vegas, NV for 2 days. The amount of time and

energy it took to plan this trip ( medications, etc) was almost not worth it.

We were so exhausted that I cried the entire plane ride back. Leanna had fun

and that was the point of the trip, but I felt like I just wanted for once to

be able to relax and I know that can never happen while I am alive. So

many parents have the luxuryof a trip with healthy children and don’t

have a clue how lucky they are. I can’t even imagine allowing Leanna to

jump or run without being full of anxiety because I know she will fall and hurt

herself. The idea is beyond a fantasy for me. It is hard to not dwell on these

things. I don’t really have any words of wisdom except to say I HEAR YOU

and UNDERSTAND.

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:

AReckling@...

Sent: Tuesday, May 25, 2004 5:53

PM

To: Mito

Subject: The way I feel...[long, vent]

Hi all,

I just need to write how I'm feeling about Asher's diagnosis of mito. Just to get the

thoughts out of my head and on paper. If you don't want to read this now,

please do not feel obligated.

When I first received the report, I felt relief b/c I knew we finally had

" the " name of the beast that's been tormenting Ash. I've been reading

more, contacting the mito

expert who I hope will provide treatment/consultation, started him on the

supplements, and tried to figure out what this means for our family. What's

hard is that I don't really know what this means for Asher or our family and I

know that the doctors don't even know. Dr. Shoffner told me that it was

possible that Asher's form would be mild to moderate (which sounds good), but I

wish I knew exactly what that meant. Will he go deaf by the time he's a

teenager? Will he start to have seizures by the time he's 8? Will he grow to be

an adult, to marry, to consider whether he should have his own children or

adopt? Or will he die before then (I hate to even use those words, to have to

use those words to describe the possibilities of my son's future!!)

I am optimistic most of the day. And I even feel grateful that Asher is doing

as well as he is. But there are moments, like now, when the optimism fades and

I feel scared. Tonight, like most nights, I read to Asher and then lay next to

him in bed and sang to him and, as I looked into his beautiful blue eyes, I

realized that, now, I'm aware, almost every moment that I'm with him, that he

is so so so vulnerable. And I think my heart will break.

It is a lonely feeling to know that your child has a progressive illness that

may progress quickly or slowly or, maybe, just maybe, as I hold onto that

string of hope, be forever stopped by the " cocktail " . Or by some wonderful

scientific miracle of the next decade. How we hope!!

I also know that I am more aware of the beauty of each day with Asher. His

smile, his kiss, the sweet smell of his hair and skin and his morning greeting

of " I'm awake Mommy! " . But they all have an edge tinged with sadness

b/c I don't want to lose these moments and, yet, I do not have the power to

stop time nor the power to cure my son.

I don't want this for my son. And I don't have any choice. And I'm so so sad.

I do know that I'm not alone.

Anne R - mother to Asher (3 - oxphos defect, Complex III and possible Complex

I, - and a beautiful little boy who loves life!) and to Sam (7 - primary immune

deficiency, a great, happy, smart boy who likes to tell me facts about the

solar system and light waves)

Please

contact mito-owner with any problems or questions.

[Guest guest]

Anne,

I believe these feelings are part of the reason that brings this group of us together. I too have had alot of the same feelings lately. Lucas was admitted to the hospital Friday night due to J-tube complications. Today we spent an hour at an initial consult with palliative care. When I joined this list in 1998, I wasn't sure I belonged. Lucas only had a suspected mito disorder (abnormal nonspecific frozen muscle biopsy) and our current geneticist (see him next month haven't seen him in 2 years) wasn't sure he had it. Now we have many more symptoms very suggestive of mito. and await seeing him to explain what else it could be. I guess I am holding hope for some easy cure even though I know deep down he will never be a "normal" kid.

One of the most heartbreaking moments I have had recently was when we got home on Saturday night from the hospital. One of my 11 year olds asked me if Lucas was going to die. He told me he dreamt that I came to school one day to tell him that he had died.

I guess we all go on and try to live each day to its fullest and treasure those memories. Know that you are indeed not alone. You will manage to accept your child and know how grateful you are and how important every step they take is. I have had many people say I don't know how you do it. My answer is you do what you have to do and you learn to accept your child no matter what problems they have. The unknown is so frightening.

Take care Anne,

Loriann

[Guest guest]

Anne,

If only there were words that could ease the ache we feel as parents of childrenw tih an uncertain future. You put it very eloquently when you talked about knowing you're not alone, but still feeling sad and scared anyway...i feel that same way many many nights. i've learned a few things during this roller coaster ride we call the mito diagnosis. One of the things that has helped keep that beast at bay is to refocus on what we have right now, right this moment. If Lexi is breathing, if she is still able to look at me and smile and participate in life then i know there IS still hope. "Redefining Hope" is more than just a motto for the UMDF...it completely describes how i have to live my life every day. i sometimes think the uncertainty is the very worst part.

Asher is obviously blessed to have a Mito Mom, who is doing everything in the world to make life a safe, fun, comfortable place. My best advice is to feel sad and scared when you have to, then grab ahold of those bootstraps and PULLLLLLLL!! Because somehow life will go on, and tomorrow we will simply redefine hope...again.

i hope this helps in some small way.

we're here for you

love

ruth

mom to Mitch (9) and Lexi (6), both mito affected and my treasures