Re: I HATE this disease...a poem of tears

[Guest guest]

I HATE this disease.

I HATE seeing my son's vibrancy slowly, but surely slipping away.

I HATE explaining, once again, why my sons have to take medicine 3 or 4 times

a day, when they just want to be able to play.

I HATE the judging looks of those who just don't understand.

I HATE having to advocate so strongly when I just want to sit with my kids

and build castles in the sand.

I HATE losing our family's dignity and being accused of so much, including

using my kids illness as some sort of weird crutch.

I HATE the isolation, the pain, the accusations of secondary gain.

I HATE the tears of my children, the cries of "why me?!"

I HATE not being able to just cast our cares out to the sea.

I HATE not having answers, nothing in black and white,

I HATE not having a cure anywhere near in sight.

I HATE this bleakness, when we're usually so upbeat,

I HATE this disease.

Dena, 2002

Dena...Thank you for sharing, you're not alone.

[Guest guest]

I HATE this disease.

I HATE seeing my son's vibrancy slowly, but surely slipping away.

I HATE explaining, once again, why my sons have to take medicine 3 or 4 times

a day, when they just want to be able to play.

I HATE the judging looks of those who just don't understand.

I HATE having to advocate so strongly when I just want to sit with my kids

and build castles in the sand.

I HATE losing our family's dignity and being accused of so much, including

using my kids illness as some sort of weird crutch.

I HATE the isolation, the pain, the accusations of secondary gain.

I HATE the tears of my children, the cries of "why me?!"

I HATE not being able to just cast our cares out to the sea.

I HATE not having answers, nothing in black and white,

I HATE not having a cure anywhere near in sight.

I HATE this bleakness, when we're usually so upbeat,

I HATE this disease.

Dena, 2002

Dena...Thank you for sharing, you're not alone.

[Guest guest]

Dena,

Nice Poem! I printed ir out.

Robin

[Guest guest]

Dena,

Nice Poem! I printed ir out.

Robin

[Guest guest]

Good Morning Dena,

I agree with you. It is going to take this anger to give us energy to find a cure for mito.

The last visit at the doctor's office, J.D. told the doctor that he only wanted to use his energy for fun stuff. Can't say that I blame him.

Hang in there!

Darlene

[Guest guest]

I had 2 primal screams this morning at the ceiling. Enough to to

frighten my baby into screams of his own. Then, my wonderful hubby

timed it perfectly to walk in the door at that instant. I sat on the

floor and sobbed for 30 minutes just to relieve the pressure. Good

thing DH was home to watch the kids. Poor hubby wanted to fix it but

it can't be fixed.

I get your stuff totally. Your words in my tears.

Bec

> I HATE this disease.

> I HATE seeing my son's vibrancy slowly, but surely slipping away.

> I HATE explaining, once again, why my sons have to take medicine 3

or 4 times

> a day, when they just want to be able to play.

> I HATE the judging looks of those who just don't understand.

> I HATE having to advocate so strongly when I just want to sit with

my kids

> and build castles in the sand.

> I HATE losing our family's dignity and being accused of so much,

including

> using my kids illness as some sort of weird crutch.

> I HATE the isolation, the pain, the accusations of secondary gain.

> I HATE the tears of my children, the cries of " why me?! "

> I HATE not being able to just cast our cares out to the sea.

> I HATE not having answers, nothing in black and white,

> I HATE not having a cure anywhere near in sight.

> I HATE this bleakness, when we're usually so upbeat,

> I HATE this disease.

>

> Dena, 2002

[Guest guest]

Perfect.

Jeff

[Guest guest]

YOu're most welcome Marie. It was " therapy " to me, to write it before/after

a big cry, after a tough couple of weeks. (those that we all go through)

Dena

[Guest guest]

YOu're most welcome Marie. It was " therapy " to me, to write it before/after

a big cry, after a tough couple of weeks. (those that we all go through)

Dena

[Guest guest]

Dena,

This is beautiful and it expressed my sentiments too. Really hit home!!!

Thanks so much for sharing!!!

Hugs,

Marie (mom to 8 - strongly suspected Mito/(?)MELAS - waiting for reports from Cohen)

I HATE this disease...a poem of tears

I HATE this disease.I HATE seeing my son's vibrancy slowly, but surely slipping away.I HATE explaining, once again, why my sons have to take medicine 3 or 4 times a day, when they just want to be able to play.I HATE the judging looks of those who just don't understand.I HATE having to advocate so strongly when I just want to sit with my kids and build castles in the sand.I HATE losing our family's dignity and being accused of so much, including using my kids illness as some sort of weird crutch.I HATE the isolation, the pain, the accusations of secondary gain.I HATE the tears of my children, the cries of "why me?!"I HATE not being able to just cast our cares out to the sea.I HATE not having answers, nothing in black and white,I HATE not having a cure anywhere near in sight.I HATE this bleakness, when we're usually so upbeat,I HATE this disease.Dena, 2002Please contact mito-owner with any problems or questions.