Re: I just need a good cry.

January 3, 2005

Myst,

Just know every parent who reads your post can't help but ache with you. For a reason, unknown to me, we are the ones to walk through this illness with our children and some days we simply 'get through' minute by minute. Your Abigail is blessed to have you.

Stay strong,

Hi Everyone, and Happy New Year.

We have been home since Christmas Eve, and Abigail is doing well.

Still weaker than when she first became ill this round. It is

greatly noticeble, and painful to witness.

Abigail's last illness, told us quite a lot. Most of which we I

didn't want to know.

The nasally sound in her voice isn't going away, and now that I know

it is because of muscle weakness and mean that she isn't getting

enough air I am having nightmares about it.

Knowing that she has myoblobin in her urine even when her CK levels

are relativley low for her was yet another blow for me. Now I ponder

how much damage has been done, and how much more can she endure.

The reality of how ill she is...even we she looks well enough

clinicly is numbing. I have gone through periods of fear, anger, and

grief over this illness before. Right now though...I can not express

what I am feeling...as this is a new emotion for me.

I attend most of the appointments with her, usually alone. I stay

with her night after night in the hospital. There is no where else I

want to be, but I just want him to feel what I feel. I want him to

understand what it feels like to be there 24/7 and completely

helpless.

For the first time I nearly yelled at my husband over his lack of

understanding concerning the big picture. I demanded that he face

the reality of what is happening to Abigail, and then felt guilty

for it when I saw him cry. When I went over my fears and their basis

he acted as if he were hearing it all for the first time.

Right now, I am just hurt...and having a hard time understanding why

my daughter has this awful illness. I know I am not the only parent

who feels these things...yet tonight I feel very alone.

I am longing for another span of time when we can breath easily, and

almost forget that this illness exists. However, with each day that

passes it becomes more likely that those periods are over. I need a

good cry, I need to release all the emotions that are building up in

me...and then I will be ok again.

Thx for listening.

Myst

Please contact mito-owner with any problems or questions.

January 4, 2005

Myst,

You go ahead and have yourself a good cry, sweeite. Keeping all those emotions bottled up inside is not healthy for you. I know things get overwhelming especially when we play the "what if" game. I frequently drive myself cray with that one. I wish there was something special i could do to ease the burden onyor shoulders right now. Please know that you are in all of our thoughts as you go through this. Your daughter is lucky toh ave you for a mom!

<<<<Huggzzzzz>>>>>

ruth

January 4, 2005

I'm sure that all of us that have sat next to our child in the hospital

not knowing if they're coming home with us has felt helpless

(personally, my son coded in March and was resuscitated successfully).

Reading your post it sounds like you've started the grieving process --

something that all of us do and it is a continual process. Each time we

see our child doing less, or feeling worse a little piece of us dies.

Please cry, but know that you are not alone -- we may not be there to

wipe your tears, or to give you a well needed break at the hospital but

we do care.

As mothers we NEED to be at the hospital, at the side of our child,

doing everything possible to see that the doctors and nurses follow the

proper routines and procedures for our mito child. The fathers, however,

need to burry themselves in work, provide for the family, keep

themselves busy. I bet your husband does care but is either in denial or

is distancing himself to lessen the pain of acceptance. I speak from

experience, my son, had 6 surgeries in 18 months and almost didn't

make it home from the hospital when he was born. I'll never forget the

3rd night was in NICU after he was born. Karl went to work all day

and then picked up our 3 year old to visit mommy and the new baby at the

hospital. The doctors had been running every test in the book because

was not waking up or eating. In fact he couldn't eat on his own

because his facial muscles and neck muscles weren't responding. And then

to top it off they ran the Newborn Infant Hearing Screen and told us

that they were pretty sure he was profoundly deaf (they ran the test 4

times)! I had to break the news to my husband that night -- I'll never

forget the look on his face as he buried his head in his hands and

cried. When he gained his composure he left our 3 year old with me in

the hospital and disappeared. I bet he was home before he realized what

he did. He came back and got Ellie and left again without a word. It

took him two days to come to grips enough to talk to me and ask

questions of the doctors. I knew he loved me and our new son but just

couldn't deal with the possibility of raising a special child. I have to

say he has been wonderful ever since and even gives me mini-vacations a

couple of times a year so that I can get a break.

Now, I left out the part that really helped me to accept my son as a

special child who won't be with me very long. That night that my husband

left without saying a word, I had a long talk with God -- it wasn't

really a prayer but a yelling match -- I couldn't understand why -- I

had already lost 3 pregnancies and was desperate for a baby. I never

thought that I would have a sick child who may not make it. However,

that night through my agonizing prayer I realized that I got my baby and

I asked God to help me accept and to just let him live -- I could

deal with the rest of the medical problems -- just let him live. I got

to bring home 2 days later. Now we have a host of medical problems

and he is deaf but he is home and he is mine for as long as God lets me

borrow my little angel.

Now I'm crying -- hope you feel better soon,

Sue Ann

I just need a good cry.

Hi Everyone, and Happy New Year.

We have been home since Christmas Eve, and Abigail is doing well.

Still weaker than when she first became ill this round. It is

greatly noticeble, and painful to witness.

Abigail's last illness, told us quite a lot. Most of which we I

didn't want to know.

The nasally sound in her voice isn't going away, and now that I know

it is because of muscle weakness and mean that she isn't getting

enough air I am having nightmares about it.

Knowing that she has myoblobin in her urine even when her CK levels

are relativley low for her was yet another blow for me. Now I ponder

how much damage has been done, and how much more can she endure.

The reality of how ill she is...even we she looks well enough

clinicly is numbing. I have gone through periods of fear, anger, and

grief over this illness before. Right now though...I can not express

what I am feeling...as this is a new emotion for me.

I attend most of the appointments with her, usually alone. I stay

with her night after night in the hospital. There is no where else I

want to be, but I just want him to feel what I feel. I want him to

understand what it feels like to be there 24/7 and completely

helpless.

For the first time I nearly yelled at my husband over his lack of

understanding concerning the big picture. I demanded that he face

the reality of what is happening to Abigail, and then felt guilty

for it when I saw him cry. When I went over my fears and their basis

he acted as if he were hearing it all for the first time.

Right now, I am just hurt...and having a hard time understanding why

my daughter has this awful illness. I know I am not the only parent

who feels these things...yet tonight I feel very alone.

I am longing for another span of time when we can breath easily, and

almost forget that this illness exists. However, with each day that

passes it becomes more likely that those periods are over. I need a

good cry, I need to release all the emotions that are building up in

me...and then I will be ok again.

Thx for listening.

Myst

Please contact mito-owner with any problems or

questions.

January 4, 2005

Im so sorry you feel so alone. (((hugs)))

I am relieved to read that it is common for husbands to react this

way though... my husband only started asking the 'what does this

mean' question recently and has been sick for a year. I

thought he was in total denial and that he wasnt interested... but

it sounds like its just a mans reaction to the unthinkable.

Please feel free to vent here... and know that were all thinking of

you and Abigail.

>

> Hi Everyone, and Happy New Year.

>

> We have been home since Christmas Eve, and Abigail is doing well.

> Still weaker than when she first became ill this round. It is

> greatly noticeble, and painful to witness.

>

> Abigail's last illness, told us quite a lot. Most of which we I

> didn't want to know.

>

> The nasally sound in her voice isn't going away, and now that I

know

> it is because of muscle weakness and mean that she isn't getting

> enough air I am having nightmares about it.

>

> Knowing that she has myoblobin in her urine even when her CK

levels

> are relativley low for her was yet another blow for me. Now I

ponder

> how much damage has been done, and how much more can she endure.

>

> The reality of how ill she is...even we she looks well enough

> clinicly is numbing. I have gone through periods of fear, anger,

and

> grief over this illness before. Right now though...I can not

express

> what I am feeling...as this is a new emotion for me.

>

> I attend most of the appointments with her, usually alone. I stay

> with her night after night in the hospital. There is no where else

I

> want to be, but I just want him to feel what I feel. I want him to

> understand what it feels like to be there 24/7 and completely

> helpless.

>

> For the first time I nearly yelled at my husband over his lack of

> understanding concerning the big picture. I demanded that he face

> the reality of what is happening to Abigail, and then felt guilty

> for it when I saw him cry. When I went over my fears and their

basis

> he acted as if he were hearing it all for the first time.

>

> Right now, I am just hurt...and having a hard time understanding

why

> my daughter has this awful illness. I know I am not the only

parent

> who feels these things...yet tonight I feel very alone.

>

> I am longing for another span of time when we can breath easily,

and

> almost forget that this illness exists. However, with each day

that

> passes it becomes more likely that those periods are over. I need

a

> good cry, I need to release all the emotions that are building up

in

> me...and then I will be ok again.

>

> Thx for listening.

>

> Myst

January 4, 2005

Hi Myst - Happy New Year to you and your Family too!! You go ahead

and cry girl, seems to be the only thing we can do to help us through

this. In my opinion, I have to say it's not that our men don't care

and understand what is happening, they do. I believe they are just

give us, the " moms " , the space that we need to care for our sick

children. I remember being sick as a child, even today at 40, I

would call my mommy to make me feel better - it's the mother's touch

that makes it all better. Anyhow, just remember you are not alone;

we all have good and bad days - just as any family does. Keep your

chin up, vent when you can and take a hug anytime it is

offered. )

>