Re: Grief -- Is it EVER private?

[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.

[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.