Re: Grief -- Is it EVER private?

[Guest guest]

BRAVO! BRAVO! BRAVO!!!!

I wish I could have said that well! I agree with sharing what I am dealing with to help others...that is why we are here...that hopefully there will be some good to come out of the grief we are feeling...this is why we share. This, and because so many here have helped us...

thank you...much...

deb

[Guest guest]

BRAVO! BRAVO! BRAVO!!!!

I wish I could have said that well! I agree with sharing what I am dealing with to help others...that is why we are here...that hopefully there will be some good to come out of the grief we are feeling...this is why we share. This, and because so many here have helped us...

thank you...much...

deb

[Guest guest]

BRAVO! BRAVO! BRAVO!!!!

I wish I could have said that well! I agree with sharing what I am dealing with to help others...that is why we are here...that hopefully there will be some good to come out of the grief we are feeling...this is why we share. This, and because so many here have helped us...

thank you...much...

deb

[Guest guest]

,

I was deeply touched by your heart felt post. Well said in every sense of

the word!

ruth

[Guest guest]

,

Well said. I agree that this disease is much more than medical symptoms. It touches and affects every aspect of our lives. I believe that those symptoms should be as much a part of this list as liver function tests and the like. Like you said, if you don't want to read it, or can't deal with it today, move on. Sometimes it just feels good to get it off your chest. We need support on how to deal with the medical aspects of this disease as well as the emotional, financial, social, etc. aspects.

('s mom)

[Guest guest]

,

Well said. I agree that this disease is much more than medical symptoms. It touches and affects every aspect of our lives. I believe that those symptoms should be as much a part of this list as liver function tests and the like. Like you said, if you don't want to read it, or can't deal with it today, move on. Sometimes it just feels good to get it off your chest. We need support on how to deal with the medical aspects of this disease as well as the emotional, financial, social, etc. aspects.

('s mom)

[Guest guest]

,

Well said. I agree that this disease is much more than medical symptoms. It touches and affects every aspect of our lives. I believe that those symptoms should be as much a part of this list as liver function tests and the like. Like you said, if you don't want to read it, or can't deal with it today, move on. Sometimes it just feels good to get it off your chest. We need support on how to deal with the medical aspects of this disease as well as the emotional, financial, social, etc. aspects.

('s mom)

[Guest guest]

aw you gave me cold chills reading your post. You said it exactly right. I think I can speak for many that you express ALOT of the same feelings we do. Thanks for sharing! I'll be saying a prayer for your other son too, as you face another difficult situation. Hugs,

[Guest guest]

aw you gave me cold chills reading your post. You said it exactly right. I think I can speak for many that you express ALOT of the same feelings we do. Thanks for sharing! I'll be saying a prayer for your other son too, as you face another difficult situation. Hugs,

[Guest guest]

Thank you everyone for the kind words. The past weeks have been hard

for me....no specific reason, but I definately feel the burden

of " carrying my cross " lately. *I* have been feeling the strain of

this disease more than ever and I think that is why this topic

touched me the way it did -- because the strain hasn't been a

physical one but an emotional one. I have been angry, sad, and just

overall lost. I want the miracle pill -- I want it to end -- I don't

WANT ME OR LUKE to endure some of the things that some of you and

your children are enduring right now. I have felt the rollercoaster

of this disease -- going from " we don't know if this child will make

it " and " he might die and we might not be able to tell you why "

(prediagnosis), to " he probably won't walk without aides " , to " he

seems okay right now, can't you just be happy with that " and now

to " well he has some strange things going on, but I don't know what

they mean " (UGGGHHH!!!!)......and the constant worrying of if we are

ever going to be heading down the downward slope again. I remember

being a 23 year old mom and dropping to my knees in the chapel at the

hospital and praying -- I mean deep down to my soul praying -- asking

God, no telling God that he needed to either make Luke better or take

him home but to end the suffering of my 5 month old baby. NO PARENT

should EVER have to do that.

And you know what else, on top of all the normal emotions that go

with dealing with mito I also have a 4 year old that will be having a

lumpectomy of a suspicious node on his lymph node in his neck which

makes you wonder have you been neglecting illnesses in your other

kids because you are consumed with mito and Luke? I mean come on,

how many demons can I HAVE in my house.

Lets not mention that there is also the stress of me being offered a

GREAT job that could really help us out financially with all these

medical bills, but it would require me to be gone M-F from 4pm to 2

am and I just don't know if I want to sacrifice those evenings,

tucking Luke and my other kids in bed, kissing his sweaty hair line

as he sleeps or being their to massage his legs because he has woken

up with cramps. However, on the flip side, is it fair to leave my

husband with all the financial burdens? TO make him work OBSENE

hours even though he is on salary because he wants to earn a bonus,

or the next pay raise, or secure his job position?

I want to feel free to share these things with all of you, and I want

ya'll to be able to share them with all of us. Just like GI drs and

neurologist and blood tests and all the other physical symptoms are

part of our daily lives -- these other things are ALSO very REAL

symptoms and I personally need to talk about those as well.

I mean, is it just me or does this disease make others of you feel

like you have a mental disorder at times....happy and high and then

at the snap of the fingers.....I distant memory of something having

you weeping uncontrollably???? WHO else besides other people dealing

with the same things understand that we AREN'T nuts?

Plain and simple, I don't post often mainly because I don't really

know what I have to add since we are pretty healthy right now, but

even having not met any of you, I love all of you dearly. All of you

unfortunately share something with me, that noone else can really

get -- we are all members of a club that none of us want to be in. I

shed tears when I read your stories of acomplishments and also of

trials and tribulations -- I share the pain with you all when there

is a crisis.

And gosh, I know it is time for me to shut up!!!

and Luke

[Guest guest]

Thank you everyone for the kind words. The past weeks have been hard

for me....no specific reason, but I definately feel the burden

of " carrying my cross " lately. *I* have been feeling the strain of

this disease more than ever and I think that is why this topic

touched me the way it did -- because the strain hasn't been a

physical one but an emotional one. I have been angry, sad, and just

overall lost. I want the miracle pill -- I want it to end -- I don't

WANT ME OR LUKE to endure some of the things that some of you and

your children are enduring right now. I have felt the rollercoaster

of this disease -- going from " we don't know if this child will make

it " and " he might die and we might not be able to tell you why "

(prediagnosis), to " he probably won't walk without aides " , to " he

seems okay right now, can't you just be happy with that " and now

to " well he has some strange things going on, but I don't know what

they mean " (UGGGHHH!!!!)......and the constant worrying of if we are

ever going to be heading down the downward slope again. I remember

being a 23 year old mom and dropping to my knees in the chapel at the

hospital and praying -- I mean deep down to my soul praying -- asking

God, no telling God that he needed to either make Luke better or take

him home but to end the suffering of my 5 month old baby. NO PARENT

should EVER have to do that.

And you know what else, on top of all the normal emotions that go

with dealing with mito I also have a 4 year old that will be having a

lumpectomy of a suspicious node on his lymph node in his neck which

makes you wonder have you been neglecting illnesses in your other

kids because you are consumed with mito and Luke? I mean come on,

how many demons can I HAVE in my house.

Lets not mention that there is also the stress of me being offered a

GREAT job that could really help us out financially with all these

medical bills, but it would require me to be gone M-F from 4pm to 2

am and I just don't know if I want to sacrifice those evenings,

tucking Luke and my other kids in bed, kissing his sweaty hair line

as he sleeps or being their to massage his legs because he has woken

up with cramps. However, on the flip side, is it fair to leave my

husband with all the financial burdens? TO make him work OBSENE

hours even though he is on salary because he wants to earn a bonus,

or the next pay raise, or secure his job position?

I want to feel free to share these things with all of you, and I want

ya'll to be able to share them with all of us. Just like GI drs and

neurologist and blood tests and all the other physical symptoms are

part of our daily lives -- these other things are ALSO very REAL

symptoms and I personally need to talk about those as well.

I mean, is it just me or does this disease make others of you feel

like you have a mental disorder at times....happy and high and then

at the snap of the fingers.....I distant memory of something having

you weeping uncontrollably???? WHO else besides other people dealing

with the same things understand that we AREN'T nuts?

Plain and simple, I don't post often mainly because I don't really

know what I have to add since we are pretty healthy right now, but

even having not met any of you, I love all of you dearly. All of you

unfortunately share something with me, that noone else can really

get -- we are all members of a club that none of us want to be in. I

shed tears when I read your stories of acomplishments and also of

trials and tribulations -- I share the pain with you all when there

is a crisis.

And gosh, I know it is time for me to shut up!!!

and Luke

[Guest guest]

Thank you everyone for the kind words. The past weeks have been hard

for me....no specific reason, but I definately feel the burden

of " carrying my cross " lately. *I* have been feeling the strain of

this disease more than ever and I think that is why this topic

touched me the way it did -- because the strain hasn't been a

physical one but an emotional one. I have been angry, sad, and just

overall lost. I want the miracle pill -- I want it to end -- I don't

WANT ME OR LUKE to endure some of the things that some of you and

your children are enduring right now. I have felt the rollercoaster

of this disease -- going from " we don't know if this child will make

it " and " he might die and we might not be able to tell you why "

(prediagnosis), to " he probably won't walk without aides " , to " he

seems okay right now, can't you just be happy with that " and now

to " well he has some strange things going on, but I don't know what

they mean " (UGGGHHH!!!!)......and the constant worrying of if we are

ever going to be heading down the downward slope again. I remember

being a 23 year old mom and dropping to my knees in the chapel at the

hospital and praying -- I mean deep down to my soul praying -- asking

God, no telling God that he needed to either make Luke better or take

him home but to end the suffering of my 5 month old baby. NO PARENT

should EVER have to do that.

And you know what else, on top of all the normal emotions that go

with dealing with mito I also have a 4 year old that will be having a

lumpectomy of a suspicious node on his lymph node in his neck which

makes you wonder have you been neglecting illnesses in your other

kids because you are consumed with mito and Luke? I mean come on,

how many demons can I HAVE in my house.

Lets not mention that there is also the stress of me being offered a

GREAT job that could really help us out financially with all these

medical bills, but it would require me to be gone M-F from 4pm to 2

am and I just don't know if I want to sacrifice those evenings,

tucking Luke and my other kids in bed, kissing his sweaty hair line

as he sleeps or being their to massage his legs because he has woken

up with cramps. However, on the flip side, is it fair to leave my

husband with all the financial burdens? TO make him work OBSENE

hours even though he is on salary because he wants to earn a bonus,

or the next pay raise, or secure his job position?

I want to feel free to share these things with all of you, and I want

ya'll to be able to share them with all of us. Just like GI drs and

neurologist and blood tests and all the other physical symptoms are

part of our daily lives -- these other things are ALSO very REAL

symptoms and I personally need to talk about those as well.

I mean, is it just me or does this disease make others of you feel

like you have a mental disorder at times....happy and high and then

at the snap of the fingers.....I distant memory of something having

you weeping uncontrollably???? WHO else besides other people dealing

with the same things understand that we AREN'T nuts?

Plain and simple, I don't post often mainly because I don't really

know what I have to add since we are pretty healthy right now, but

even having not met any of you, I love all of you dearly. All of you

unfortunately share something with me, that noone else can really

get -- we are all members of a club that none of us want to be in. I

shed tears when I read your stories of acomplishments and also of

trials and tribulations -- I share the pain with you all when there

is a crisis.

And gosh, I know it is time for me to shut up!!!

and Luke

[Guest guest]

,

How eloquently said!!!!!!!!!

Kathy, grandma to Audrey,18mos

[Guest guest]

,

How eloquently said!!!!!!!!!

Kathy, grandma to Audrey,18mos

[Guest guest]

,

My prayers will be with you, not just for Luke, but for your four year

old as he has his biopsy. Please keep us informed as to how he is doing

also.

Kathy, grandma to Audrey, 18mos

[Guest guest]

,

My prayers will be with you, not just for Luke, but for your four year

old as he has his biopsy. Please keep us informed as to how he is doing

also.

Kathy, grandma to Audrey, 18mos

[Guest guest]

,

My prayers will be with you, not just for Luke, but for your four year

old as he has his biopsy. Please keep us informed as to how he is doing

also.

Kathy, grandma to Audrey, 18mos

[Guest guest]

I also agree. This group has meant so much to me in the last several months when we have ran into so many new territories. I have watched my daughter decline in many areas and you all have helped me to understand some of what is going on. I feel we all should be able to talk and share whatever in on our minds with one another, especially in areas that are so tough such as death. We all know the possibilities of that aspect in our children and how hard it is to come to terms with it. If we are able to share with one another our concerns and fears then others can come along beside us and comfort and support us when we need it the most. I am the type of person that would like to know the possibilities of the future rather than hide my heart and mind from those possibilities. I am grateful to Deb and many of the others who have shared so openly with us. I hope we can all continue to be open with one another. (I guess I also am not worried about who reads the archives...maybe they will learn something and see our side of things.) Darla: mom to Asenath (almost 3) stroke, SLE's, bi-hemi, migraines, seizures, Carnitine deficiency, high metabolic acidosis, bi-carb issue, ketone problem, unknown Mito (suspected Complex 1 deficiency) Re: Grief -- Is it EVER private? BRAVO! BRAVO! BRAVO!!!!I wish I could have said that well! I agree with sharing what I am dealing with to help others...that is why we are here...that hopefully there will be some good to come out of the grief we are feeling...this is why we share. This, and because so many here have helped us...thank you...much...deb Please contact mito-owner with any problems or questions.

[Guest guest]

,

I am sending you a huge hug. Please know that you are in my thoughts and prayers. I hope tomorrow will be much better for you. You are not alone as I have spent many days walking where you are at and boy do I understand. How many times I wonder if I am just not loosing my mind and second guessing myself thinking am I making more out of this than I should ect. Tomorrow is a fresh new day and I pray it will be full of lots of smiles and sunshine just for you.

Blessings!

Horsley

Re: Grief -- Is it EVER private?

Thank you everyone for the kind words. The past weeks have been hard for me....no specific reason, but I definately feel the burden of "carrying my cross" lately. *I* have been feeling the strain of this disease more than ever and I think that is why this topic touched me the way it did -- because the strain hasn't been a physical one but an emotional one. I have been angry, sad, and just overall lost. I want the miracle pill -- I want it to end -- I don't WANT ME OR LUKE to endure some of the things that some of you and your children are enduring right now. I have felt the rollercoaster of this disease -- going from "we don't know if this child will make it" and "he might die and we might not be able to tell you why" (prediagnosis), to "he probably won't walk without aides", to "he seems okay right now, can't you just be happy with that" and now to "well he has some strange things going on, but I don't know what they mean" (UGGGHHH!!!!)......and the constant worrying of if we are ever going to be heading down the downward slope again. I remember being a 23 year old mom and dropping to my knees in the chapel at the hospital and praying -- I mean deep down to my soul praying -- asking God, no telling God that he needed to either make Luke better or take him home but to end the suffering of my 5 month old baby. NO PARENT should EVER have to do that.And you know what else, on top of all the normal emotions that go with dealing with mito I also have a 4 year old that will be having a lumpectomy of a suspicious node on his lymph node in his neck which makes you wonder have you been neglecting illnesses in your other kids because you are consumed with mito and Luke? I mean come on, how many demons can I HAVE in my house.Lets not mention that there is also the stress of me being offered a GREAT job that could really help us out financially with all these medical bills, but it would require me to be gone M-F from 4pm to 2 am and I just don't know if I want to sacrifice those evenings, tucking Luke and my other kids in bed, kissing his sweaty hair line as he sleeps or being their to massage his legs because he has woken up with cramps. However, on the flip side, is it fair to leave my husband with all the financial burdens? TO make him work OBSENE hours even though he is on salary because he wants to earn a bonus, or the next pay raise, or secure his job position?I want to feel free to share these things with all of you, and I want ya'll to be able to share them with all of us. Just like GI drs and neurologist and blood tests and all the other physical symptoms are part of our daily lives -- these other things are ALSO very REAL symptoms and I personally need to talk about those as well.I mean, is it just me or does this disease make others of you feel like you have a mental disorder at times....happy and high and then at the snap of the fingers.....I distant memory of something having you weeping uncontrollably???? WHO else besides other people dealing with the same things understand that we AREN'T nuts?Plain and simple, I don't post often mainly because I don't really know what I have to add since we are pretty healthy right now, but even having not met any of you, I love all of you dearly. All of you unfortunately share something with me, that noone else can really get -- we are all members of a club that none of us want to be in. I shed tears when I read your stories of acomplishments and also of trials and tribulations -- I share the pain with you all when there is a crisis. And gosh, I know it is time for me to shut up!!! and LukePlease contact mito-owner with any problems or questions.

[Guest guest]

,

I am sending you a huge hug. Please know that you are in my thoughts and prayers. I hope tomorrow will be much better for you. You are not alone as I have spent many days walking where you are at and boy do I understand. How many times I wonder if I am just not loosing my mind and second guessing myself thinking am I making more out of this than I should ect. Tomorrow is a fresh new day and I pray it will be full of lots of smiles and sunshine just for you.

Blessings!

Horsley

Re: Grief -- Is it EVER private?

Thank you everyone for the kind words. The past weeks have been hard for me....no specific reason, but I definately feel the burden of "carrying my cross" lately. *I* have been feeling the strain of this disease more than ever and I think that is why this topic touched me the way it did -- because the strain hasn't been a physical one but an emotional one. I have been angry, sad, and just overall lost. I want the miracle pill -- I want it to end -- I don't WANT ME OR LUKE to endure some of the things that some of you and your children are enduring right now. I have felt the rollercoaster of this disease -- going from "we don't know if this child will make it" and "he might die and we might not be able to tell you why" (prediagnosis), to "he probably won't walk without aides", to "he seems okay right now, can't you just be happy with that" and now to "well he has some strange things going on, but I don't know what they mean" (UGGGHHH!!!!)......and the constant worrying of if we are ever going to be heading down the downward slope again. I remember being a 23 year old mom and dropping to my knees in the chapel at the hospital and praying -- I mean deep down to my soul praying -- asking God, no telling God that he needed to either make Luke better or take him home but to end the suffering of my 5 month old baby. NO PARENT should EVER have to do that.And you know what else, on top of all the normal emotions that go with dealing with mito I also have a 4 year old that will be having a lumpectomy of a suspicious node on his lymph node in his neck which makes you wonder have you been neglecting illnesses in your other kids because you are consumed with mito and Luke? I mean come on, how many demons can I HAVE in my house.Lets not mention that there is also the stress of me being offered a GREAT job that could really help us out financially with all these medical bills, but it would require me to be gone M-F from 4pm to 2 am and I just don't know if I want to sacrifice those evenings, tucking Luke and my other kids in bed, kissing his sweaty hair line as he sleeps or being their to massage his legs because he has woken up with cramps. However, on the flip side, is it fair to leave my husband with all the financial burdens? TO make him work OBSENE hours even though he is on salary because he wants to earn a bonus, or the next pay raise, or secure his job position?I want to feel free to share these things with all of you, and I want ya'll to be able to share them with all of us. Just like GI drs and neurologist and blood tests and all the other physical symptoms are part of our daily lives -- these other things are ALSO very REAL symptoms and I personally need to talk about those as well.I mean, is it just me or does this disease make others of you feel like you have a mental disorder at times....happy and high and then at the snap of the fingers.....I distant memory of something having you weeping uncontrollably???? WHO else besides other people dealing with the same things understand that we AREN'T nuts?Plain and simple, I don't post often mainly because I don't really know what I have to add since we are pretty healthy right now, but even having not met any of you, I love all of you dearly. All of you unfortunately share something with me, that noone else can really get -- we are all members of a club that none of us want to be in. I shed tears when I read your stories of acomplishments and also of trials and tribulations -- I share the pain with you all when there is a crisis. And gosh, I know it is time for me to shut up!!! and LukePlease contact mito-owner with any problems or questions.

[Guest guest]

,

I am sending you a huge hug. Please know that you are in my thoughts and prayers. I hope tomorrow will be much better for you. You are not alone as I have spent many days walking where you are at and boy do I understand. How many times I wonder if I am just not loosing my mind and second guessing myself thinking am I making more out of this than I should ect. Tomorrow is a fresh new day and I pray it will be full of lots of smiles and sunshine just for you.

Blessings!

Horsley

Re: Grief -- Is it EVER private?

Thank you everyone for the kind words. The past weeks have been hard for me....no specific reason, but I definately feel the burden of "carrying my cross" lately. *I* have been feeling the strain of this disease more than ever and I think that is why this topic touched me the way it did -- because the strain hasn't been a physical one but an emotional one. I have been angry, sad, and just overall lost. I want the miracle pill -- I want it to end -- I don't WANT ME OR LUKE to endure some of the things that some of you and your children are enduring right now. I have felt the rollercoaster of this disease -- going from "we don't know if this child will make it" and "he might die and we might not be able to tell you why" (prediagnosis), to "he probably won't walk without aides", to "he seems okay right now, can't you just be happy with that" and now to "well he has some strange things going on, but I don't know what they mean" (UGGGHHH!!!!)......and the constant worrying of if we are ever going to be heading down the downward slope again. I remember being a 23 year old mom and dropping to my knees in the chapel at the hospital and praying -- I mean deep down to my soul praying -- asking God, no telling God that he needed to either make Luke better or take him home but to end the suffering of my 5 month old baby. NO PARENT should EVER have to do that.And you know what else, on top of all the normal emotions that go with dealing with mito I also have a 4 year old that will be having a lumpectomy of a suspicious node on his lymph node in his neck which makes you wonder have you been neglecting illnesses in your other kids because you are consumed with mito and Luke? I mean come on, how many demons can I HAVE in my house.Lets not mention that there is also the stress of me being offered a GREAT job that could really help us out financially with all these medical bills, but it would require me to be gone M-F from 4pm to 2 am and I just don't know if I want to sacrifice those evenings, tucking Luke and my other kids in bed, kissing his sweaty hair line as he sleeps or being their to massage his legs because he has woken up with cramps. However, on the flip side, is it fair to leave my husband with all the financial burdens? TO make him work OBSENE hours even though he is on salary because he wants to earn a bonus, or the next pay raise, or secure his job position?I want to feel free to share these things with all of you, and I want ya'll to be able to share them with all of us. Just like GI drs and neurologist and blood tests and all the other physical symptoms are part of our daily lives -- these other things are ALSO very REAL symptoms and I personally need to talk about those as well.I mean, is it just me or does this disease make others of you feel like you have a mental disorder at times....happy and high and then at the snap of the fingers.....I distant memory of something having you weeping uncontrollably???? WHO else besides other people dealing with the same things understand that we AREN'T nuts?Plain and simple, I don't post often mainly because I don't really know what I have to add since we are pretty healthy right now, but even having not met any of you, I love all of you dearly. All of you unfortunately share something with me, that noone else can really get -- we are all members of a club that none of us want to be in. I shed tears when I read your stories of acomplishments and also of trials and tribulations -- I share the pain with you all when there is a crisis. And gosh, I know it is time for me to shut up!!! and LukePlease contact mito-owner with any problems or questions.

[Guest guest]

He has done for her what we and the doctors couldn't

> do. He didn't do it in the way we expected or hoped for, He did it

His way.

Jim,

Thank you for the words that you shared. Once again, I felt my

cheeks wet as silent tears streamed down my face. The phrase above

is very profound and something that I needed a reminder of right

now. I have to remember to be greatful for today. I look forward to

the future when people like your son will make the connections and

end the suffering of our babies. How sorry I am though that Sara and

so many others have become angels before that time. Thank you for

sharing just a bit of strength with me today that I was lacking.

and Luke

[Guest guest]

,

That was beautifully put. I found myself feeling like I was reading my own journal. It is eerie how much most of us have in common. I could not have expressed my feeling for this group and the uniqueness of our lives any better than you just did. Thank you and it is great to know we are not alone, please continue to be so open and honest and I will too. We need that.

Blessings,

-----Original Message----- Sent: Monday, February 24, 2003 8:31 AMTo: Mito Subject: Re: Grief -- Is it EVER private?Thank you everyone for the kind words. The past weeks have been hard for me....no specific reason, but I definately feel the burden of "carrying my cross" lately. *I* have been feeling the strain of this disease more than ever and I think that is why this topic touched me the way it did -- because the strain hasn't been a physical one but an emotional one. I have been angry, sad, and just overall lost. I want the miracle pill -- I want it to end -- I don't WANT ME OR LUKE to endure some of the things that some of you and your children are enduring right now. I have felt the rollercoaster of this disease -- going from "we don't know if this child will make it" and "he might die and we might not be able to tell you why" (prediagnosis), to "he probably won't walk without aides", to "he seems okay right now, can't you just be happy with that" and now to "well he has some strange things going on, but I don't know what they mean" (UGGGHHH!!!!)......and the constant worrying of if we are ever going to be heading down the downward slope again. I remember being a 23 year old mom and dropping to my knees in the chapel at the hospital and praying -- I mean deep down to my soul praying -- asking God, no telling God that he needed to either make Luke better or take him home but to end the suffering of my 5 month old baby. NO PARENT should EVER have to do that.And you know what else, on top of all the normal emotions that go with dealing with mito I also have a 4 year old that will be having a lumpectomy of a suspicious node on his lymph node in his neck which makes you wonder have you been neglecting illnesses in your other kids because you are consumed with mito and Luke? I mean come on, how many demons can I HAVE in my house.Lets not mention that there is also the stress of me being offered a GREAT job that could really help us out financially with all these medical bills, but it would require me to be gone M-F from 4pm to 2 am and I just don't know if I want to sacrifice those evenings, tucking Luke and my other kids in bed, kissing his sweaty hair line as he sleeps or being their to massage his legs because he has woken up with cramps. However, on the flip side, is it fair to leave my husband with all the financial burdens? TO make him work OBSENE hours even though he is on salary because he wants to earn a bonus, or the next pay raise, or secure his job position?I want to feel free to share these things with all of you, and I want ya'll to be able to share them with all of us. Just like GI drs and neurologist and blood tests and all the other physical symptoms are part of our daily lives -- these other things are ALSO very REAL symptoms and I personally need to talk about those as well.I mean, is it just me or does this disease make others of you feel like you have a mental disorder at times....happy and high and then at the snap of the fingers.....I distant memory of something having you weeping uncontrollably???? WHO else besides other people dealing with the same things understand that we AREN'T nuts?Plain and simple, I don't post often mainly because I don't really know what I have to add since we are pretty healthy right now, but even having not met any of you, I love all of you dearly. All of you unfortunately share something with me, that noone else can really get -- we are all members of a club that none of us want to be in. I shed tears when I read your stories of acomplishments and also of trials and tribulations -- I share the pain with you all when there is a crisis. And gosh, I know it is time for me to shut up!!! and LukePlease contact mito-owner with any problems or questions.

[Guest guest]

,

That was beautifully put. I found myself feeling like I was reading my own journal. It is eerie how much most of us have in common. I could not have expressed my feeling for this group and the uniqueness of our lives any better than you just did. Thank you and it is great to know we are not alone, please continue to be so open and honest and I will too. We need that.

Blessings,

-----Original Message----- Sent: Monday, February 24, 2003 8:31 AMTo: Mito Subject: Re: Grief -- Is it EVER private?Thank you everyone for the kind words. The past weeks have been hard for me....no specific reason, but I definately feel the burden of "carrying my cross" lately. *I* have been feeling the strain of this disease more than ever and I think that is why this topic touched me the way it did -- because the strain hasn't been a physical one but an emotional one. I have been angry, sad, and just overall lost. I want the miracle pill -- I want it to end -- I don't WANT ME OR LUKE to endure some of the things that some of you and your children are enduring right now. I have felt the rollercoaster of this disease -- going from "we don't know if this child will make it" and "he might die and we might not be able to tell you why" (prediagnosis), to "he probably won't walk without aides", to "he seems okay right now, can't you just be happy with that" and now to "well he has some strange things going on, but I don't know what they mean" (UGGGHHH!!!!)......and the constant worrying of if we are ever going to be heading down the downward slope again. I remember being a 23 year old mom and dropping to my knees in the chapel at the hospital and praying -- I mean deep down to my soul praying -- asking God, no telling God that he needed to either make Luke better or take him home but to end the suffering of my 5 month old baby. NO PARENT should EVER have to do that.And you know what else, on top of all the normal emotions that go with dealing with mito I also have a 4 year old that will be having a lumpectomy of a suspicious node on his lymph node in his neck which makes you wonder have you been neglecting illnesses in your other kids because you are consumed with mito and Luke? I mean come on, how many demons can I HAVE in my house.Lets not mention that there is also the stress of me being offered a GREAT job that could really help us out financially with all these medical bills, but it would require me to be gone M-F from 4pm to 2 am and I just don't know if I want to sacrifice those evenings, tucking Luke and my other kids in bed, kissing his sweaty hair line as he sleeps or being their to massage his legs because he has woken up with cramps. However, on the flip side, is it fair to leave my husband with all the financial burdens? TO make him work OBSENE hours even though he is on salary because he wants to earn a bonus, or the next pay raise, or secure his job position?I want to feel free to share these things with all of you, and I want ya'll to be able to share them with all of us. Just like GI drs and neurologist and blood tests and all the other physical symptoms are part of our daily lives -- these other things are ALSO very REAL symptoms and I personally need to talk about those as well.I mean, is it just me or does this disease make others of you feel like you have a mental disorder at times....happy and high and then at the snap of the fingers.....I distant memory of something having you weeping uncontrollably???? WHO else besides other people dealing with the same things understand that we AREN'T nuts?Plain and simple, I don't post often mainly because I don't really know what I have to add since we are pretty healthy right now, but even having not met any of you, I love all of you dearly. All of you unfortunately share something with me, that noone else can really get -- we are all members of a club that none of us want to be in. I shed tears when I read your stories of acomplishments and also of trials and tribulations -- I share the pain with you all when there is a crisis. And gosh, I know it is time for me to shut up!!! and LukePlease contact mito-owner with any problems or questions.

[Guest guest]

Thank you for sharing. I feel like Cameron is doing well now too and am grateful, but I still share those same feelings you mentioned. Once again I am reminded that I am not alone and only someone who deals with this "mito beast" can even begin to relate.

I am all for sharing openly on this site because I feel it is the only place I can share, sometimes.

Riley

-----Original Message----- Sent: Monday, February 24, 2003 7:41 AMTo: Mito Subject: Grief -- Is it EVER private?With 5 kids and all the health issues we have been having lately I don't get to read as much as I would like, but do pop in every few days and read until my eyes are tired. The original posting must have taken place on one of my "off" days, but boy I have read all the newer posts and I have a few things I would like to say.I feel fortunate that Luke is as healthy as he is. Compared to many mito kids he would be considered "normal" I am sure. However, as greatful as I am, it doesn't take away the past six years of worry. It doesn't take away the initial sense of loss I felt when I heard Mito and couldn't find any information on it or when the neurologist told me that IF he walked it would only be with aides (God if that QUACK could see him play baseball NOW! or sled, or jump, or any of the other by the grace of God things that he does), or when he is crying and I can't fix it (I don't know about others, but personally that is the worse for me as a mom...I am superwoman I am supposed to be able to fix everything!). It doesn't take away the ANGER I feel when he has to miss something due to illness and I wonder if one day he won't ever be able to do it, or buffer the feelings of rage when I think that he probably will have to repeat the 1st grade because of no fault of his own he just can't learn to read, or when I take him to a "specialist" to help us and I have to SPELL Mitochondrial Myopathy for them.Knowing that Luke is relatively healthy TODAY also doesn't buffer the GRIEF that I feel when I just get a hint of the grimness that the future COULD hold. However, just like worrying and anger don't just take place inside the privacy of my own home where noone is watching, grief doesn't either. I feel the need to explain that to me GRIEF is that feeling that I get when I feel like my heart is being squeezed as hard as it can and yet a big part of it is being RIPPED out of my body at the same time. When my chest is tight, my breath is shallow, and the tears blind me. When the thoughts of NOT being able to just walk downstairs and kiss my Luke on the head overwhelm me to where I can't breath. That feeling doesn't just hit me when I am alone in the safeness of my home. No, it hits me when we are at a ballgame watching Luke try to run to first and I wonder if he will be able to play next season....it hits me when we are in church, it hits me when I see a child that is enduring their own medical crisis...hell it can hit me in the grocery store just because. Fear, anger, grief, sadness, loneliness, guilt -- these are the symptoms of this horrible horrible disease that *I* carry as Luke's mom -- as a person that likes tangeable things and is dealing with a very nonspecific monster. I hate that there are 500 other members of this list that ALSO have to carry around these symptoms and possibly others that are original to them. However, I think there is stregth in numbers. I think that if just one person can read a heartfelt post that I have written whether it be about good times, about my ever present sadness, or about the grief I experience and it touch a place that noone else has been able to touch for them then something good has come out of so much bad. If ONE person can get some of the loneliness taken away that *I* felt 6 years ago when I heart Mito and couldn't find anything on the web, then I am willing to share my intermost self with that person.Everyone has no problem sharing all of the "medical" symptoms of this disease -- well the emotional symptoms are just as important to be able to share and I think it is HORRIBLE that anyone should say otherwise. Some days I am not in a place to read something that someone as posted -- no fault of theirs -- I am just not their and you know what...I hit NEXT and move on. As far as privacy from the outside world -- I don't know, but I have a HUGE HUGE feeling that the ONLY people that would ever be reading OUR archives are people that need something from them. If the nurses at my dr's offices can't spell mitochondrial myopathy I doubt any "bad" guys can either -- but maybe I am just naive.So, I hope everyone stays here and continues to share...share all the things that are related to this monster. The problem with this disease in my opinion is that there HAS been to much that hasn't been said!Sorry this is long -- and LukePlease contact mito-owner with any problems or questions.