guilt

[Guest guest]

I know the place guilt plays in our life for those who have passed this disease

onto our children had been discussed several times. And while the reasoning

power tells us it is not our fault, and indeed it isn't, there is still a

connection that no matter what is said, cannot be errased.

Tonight, before ever hearing about Mattie, I was near tears as I heard my

daughter who is now pregnant tell me of her pain in her muscle that just wont go

away the last few days . She has had muscle pain since she has been 3. This is

not new, but it has progressed, And here she is pregnant and can't even take

anything stronger than a tylenol for it. My heart is wrenching as I know the

pain/fatigue she is feeling and that she is much worse than I was at her age. I

try to share it with my husband and he goes all to pieces over it as he has

watched me suffer so and my life be changed so drasticly. He is a great suport

to me. the best! I couldn't askl for a better understanding husband. But when it

comes to our daughter he can't handle it at all and falls all apart, so I must

bide my tongue and keep it all in. The point I am trying to make is that my

heart is going out to Jeni so much, she has lost all her children to this and

has to wonder what her future holds too. Although at this point I doubt she

cares. Mattie certainly has touched a lot of lives and his life was that of

triumph, no matter how short it was. he was a blessing indeed. We each need to

be that.

Not that I am anywhere near the situation he is in. I am as healthy as a horse

compared to him or some of you. But the pain/fatigue can be great.

My daughter has not been diagnosed, all though we are certain that she at least

has the McArdle's. She is now at the point tonight she thinks she does want to

have the biopsy. I think I will pay for her to fly up and have it done in

Boston by my doctor where she won't be blown off as 'its all in your head " he

has been aware of her situation for years.

I think of the times when my kids were little and I was so fatigued I would lay

on the floor next to them while they played as I had not enough energy to get

up, and didn't know why. I like the rest of you, think, I would rather have my

share of her pain and fatigue if only she didn't have to have it. hearing

about Mattie tonight and then my daughters email and phone call has got me blue

I guess. I am usually not like this. but it is normal for us all to gt down at

times. I just don't stay down. it usally only last a matter of hours. I am

thankful I have all of you to vent to. My life has been one of service and I

intend it to be that way until the end. Even if all I can do is pass a smile on

to others. But for now, I still touch many lives and while it is no where the

amount I want to, I am so thankful for those that I can make a difference for.

Okay, I got all my boo hoos out, I can cheer up again:) Sorry this is so long.

( I am also " under the influence " at the moment, ) not alcohol but prescription

drugs. home alone as my husband had to go back to Honduras without me today

and am feeling bad I had to miss out on that. But...........

Thanks for listening,

Smiles,

[Guest guest]

Please know that I am thinking of you, your daughter and husband. Please

vent as you need to. It also helps others as well as yourself. It may even

allow us to cry and help deal with our frustrations.

Thinking of you,

laurie

>

> Reply-To:

> Date: Tue, 22 Jun 2004 23:15:49 -0400

> To: " Mitoldies " >

> Subject: guilt

>

> I know the place guilt plays in our life for those who have passed this

> disease onto our children had been discussed several times. And while the

> reasoning power tells us it is not our fault, and indeed it isn't, there is

> still a connection that no matter what is said, cannot be errased.

> Tonight, before ever hearing about Mattie, I was near tears as I heard my

> daughter who is now pregnant tell me of her pain in her muscle that just wont

> go away the last few days . She has had muscle pain since she has been 3.

> This is not new, but it has progressed, And here she is pregnant and can't

> even take anything stronger than a tylenol for it. My heart is wrenching as I

> know the pain/fatigue she is feeling and that she is much worse than I was at

> her age. I try to share it with my husband and he goes all to pieces over it

> as he has watched me suffer so and my life be changed so drasticly. He is a

> great suport to me. the best! I couldn't askl for a better understanding

> husband. But when it comes to our daughter he can't handle it at all and falls

> all apart, so I must bide my tongue and keep it all in. The point I am trying

> to make is that my heart is going out to Jeni so much, she has lost all her

> children to this and has to wonder what her future holds too. Although at

> this point I doubt she cares. Mattie certainly has touched a lot of lives and

> his life was that of triumph, no matter how short it was. he was a blessing

> indeed. We each need to be that.

> Not that I am anywhere near the situation he is in. I am as healthy as a

> horse compared to him or some of you. But the pain/fatigue can be great.

> My daughter has not been diagnosed, all though we are certain that she at

> least has the McArdle's. She is now at the point tonight she thinks she does

> want to have the biopsy. I think I will pay for her to fly up and have it

> done in Boston by my doctor where she won't be blown off as 'its all in your

> head " he has been aware of her situation for years.

> I think of the times when my kids were little and I was so fatigued I would

> lay on the floor next to them while they played as I had not enough energy to

> get up, and didn't know why. I like the rest of you, think, I would rather

> have my share of her pain and fatigue if only she didn't have to have it.

> hearing about Mattie tonight and then my daughters email and phone call has

> got me blue I guess. I am usually not like this. but it is normal for us all

> to gt down at times. I just don't stay down. it usally only last a matter of

> hours. I am thankful I have all of you to vent to. My life has been one of

> service and I intend it to be that way until the end. Even if all I can do is

> pass a smile on to others. But for now, I still touch many lives and while it

> is no where the amount I want to, I am so thankful for those that I can make a

> difference for. Okay, I got all my boo hoos out, I can cheer up again:)

> Sorry this is so long. ( I am also " under the influence " at the moment, ) not

> alcohol but prescription drugs. home alone as my husband had to go back to

> Honduras without me today and am feeling bad I had to miss out on that.

> But...........

> Thanks for listening,

>

> Smiles,

>

>

>

>

[Guest guest]

,

We have been good friends since the day we found one another on the internet and

you have always been a huge support and very positive despite the pain and

suffering you live with each and every day. You have given so much of yourself

to people in at home but even more so those in distant lands who probably have

your face etched in their hearts forever. Your faith is amazing and I am one of

those people you have touched along the way.

I'm glad you took the time to share your grief tonight. Part of dealing with it

is letting it out. You are not made of stone. You are made of flesh and blood

with a warm and loving heart. Of course it hurts to see your child dealing with

what you feel you have passed on thru your genes. There's no way to avoid that

if you have any love at all. What we have to do is not blame ourselves and I

know blame and guilt are somewhat the same but I really think that what we feel

inside is more distress and perhaps some anger that we have passed it on without

knowing. We would take it away in a second if there were just some way to do

that. This is why I am so active as an advocate when my physical body says to

stop. I seem to do less and less but I refuse to give up until they lower me

into my grave. Just as you are seeing, I am seeing my daughter's deal with the

disease earlier than I realized that something was wrong and of course, even

more in my grandchildren.

My opinion of this is that it's natural to grieve. We just can't let it consume

us. We need to take that grief and make something postive or it. If anyone on

this list can do that, I know it is you.

I'm sorry you couldn't accompany your husband to Honduras. Knowing you as I do,

this must have been very difficult. It might be a good time to spend some

special moments with that mom to be. I know she would probably love that.

Please feel free to vent on this list or privately. My listening ears may be

deaf but they are virtually alive and well.

Hugs!

Alice