Re: Families Not Seeing Eye to Eye All Thoughts Welcome

[Guest guest]

Hi,

I am a Mito mommy, of 3 Mito tigers, who has been one for 13 years now. I felt like I was reading my own thoughts about 10 years ago when I read your post. Let me tell you, You and your husband are not clones, thank goodness! For my husband after several counseling sessions, he was finally able to communicate with me what he really felt. He felt that it was too hard for him to have to look at his beautiful little girls and boy and not be able to fix what was wrong. He was the daddy, that was his job! He could fix wheels that had come off of trucks and put back on broken dolly heads, but he couldn't fix nor save them from this horrible thing that they were facing. He had failed them as their daddy! So if he never looked at what they would be able to or not be able to do, then it really wasn't there, and he wasn't a failure. If that makes any sense at all. Its a mans way of dealing with it. Super daddy couldn't change this so there was no this. It took him 9 years to finally admit that this is what was going on inside him. Let me tell you I heard the exact words from him that your hubby is saying to you.

For me I was the opposite, I was OK we have this funky thing robbing my children of being "normal" so that's OK we will work around it. We will do everything we can and rejoice in it, and the stuff we can't well we can kick the cat or we can cry about it and get over it! We have done all of the above. For years I did the doctors visits and hospitals all on my own, he would not go near that cause that would mean he had to admit they were sick and not perfect. I was like, I have the worlds most "perfect" children and I want everyone to respect them for their accomplishments, and cry with me when we couldn't reach one. I was almost to much the other way for a while. Hey my kid is a Mito kid and look what he can do! What, your kid has a cold? Well, mine has nuropathy but they are in school, kind of attitude. I have had to curve that just a bit as I am a teacher and I would get so irritated when parents would "baby" their child and not send them to school because they had a little cold or cough or what ever. Heck if my kid can come to school on the drugs he takes yours can come with a throat lasinger or cough drop! LOl

The doctors we see, at first n at children's Hospital Los Angels we now and have for many years seen Rick Boles there, and Bruce Cohen and their Ped. have always told me, you will have a healthier, mentally healthier, child if you educate them about their illness. So that is the approach we/I have taken with them from day one. Of course at a younger age they were not told everything about their illness, but they were told they were sick, and their bodies didn't work like most kids so we have to take this medicine and spend some days in the hospital and that Pokies (IV'S) were our friends ect. However now that Kira is 13, she is involved in almost every aspect of her illness. You will know when is the right time to tell them a little more. I think the most important piece of information Rick Boles every gave me was when he said to me, " , they need to know they are sick, and why they are sick, but they also need to know that there is the "can" part to them. They "can" play, just not outside in the heat, they "can" go to school, just maybe not as long as other kids, they "can" go to summer camp (Our newest thing for this year to allow them to do, it has taken me this long to say OK to it, and I will probably need a truck load of drugs to get through the weak for my own blood pressure! LOLL) but may need to sit out a few of the activities. It is very easy to focus on the negative things because you are grieving them. For me with Kira it is her ability to have her own children, but she can adopt and be a great mommy to a child who will need her someday. Let me tell you I would not have been able to say that a few years ago because I was literally terrified of her dying. I wasted a lot of time worried about that. If I can suggest to you, my advice would be to try to stay more on the side of the "cans" however if you never ever share the "cant's" you will explode. You have to find that balance for you and them. He, your hubby will come along. Being a Mito Parent I have come to realize is being in a state of constant morning, it is what state do you chose to live in, and trust me I have lived in them all! However, my favorite state is the "Look out world just watch us Live!" state.

I learned that when I shared every little accomplishment and missed one with family and friends, that I burned them out as well. This sounds terrible, but it is the truth. Because they don't live it like you do, they want to be supportive to you and the kids, but they just can't because they are in a way grateful that it is you and not them for one, can't imagine how on earth you can do what you do as a Mito Mommy, and 3rd they don't have the emotional tie to them that you have. Not even Grand ma and Grandpa, they have a much different emotional bond then you the parent have. You have to be very careful to share enough that they get it, but not so much that they run when they see you coming cause they just can't take any more bad news, or "bragging/ goodnews, that you have to share. It is a very fine line! The only place that I have found that I can just let it all out is with other special needs moms, not even my best friend, but special needs moms who can rejoice and cry with you, because they get it! They live it and they understand you. We are a very special breed of the female species trust me!LOL I don't really know what "normal" is, we have never had nor lived it, so those moms irritate me just as much as I irritate them cause I can't relate! I can dream and hope and wish and all that good stuff, but I just can't relate cause My path is so very different from theirs. It is OK too to be on the different path. It is OK to need to tell people about your beautiful child and the cans and can'ts, It is OK to need to write about it, just find the balance, it will be different for every person, but if you look for it trust me you will find it. You will fall off of it at times and things will get a bit crazy, but look for that white horse and get back up on it as best you can.

We were told when Kira was first born by a doctor who we loved, that we would be divorced within the first year of her life because the stress is too much for a marriage to take. That is what statistics showed. Well, That was enough for us to say well we will be one of the other statistics. We have been married 15 years, there have been times I have wanted to kick him to the curb for sure and I am sure in reverse for him, but we decided that no disease was gonna change this family. It has been very hard at times and I am not saying that we won't be that statistic, but it takes communication, and allowing the other to grieve and deal in their own way, and so far we have made it.

Well, I don't know if this has helped you any or if it was just my babbling, but your post was so familiar to me I wanted to respond.

Big hugs to you and hang in there!

big hugs to you,

O

When the door of happiness closes, another opens, but often times we spend so much time looking at the closed door, we don't see the open door. Look for the open doors!

[Guest guest]

Hey, I hear you on the friend thing, I have a few close friends but not many, my friends really come from the list here of moms I have developed a relationship with through the years of this Mito thing. It is really sad, but the general population can't handle the stress it is to be our friend is what I have come to the conclusion of. Only my Mito friends really know what is going on with us. My other friends always get an answer of we are hanging thanks for asking. That's all they really want to know anyway. I hope you can develop some strong Mito mommy friends, they are so valuable to me and forgiving when I am in a state that I just need to let it out sometimes. I can be your friend! LOL Just an email away!

big hugs to you,

O

When the door of happiness closes, another opens, but often times we spend so much time looking at the closed door, we don't see the open door. Look for the open doors!

[Guest guest]

Myst;

While I agree that we must not in any way limit ourselves and our

children in what we can accomplish, I feel that Marc is *much* less

informed than you are in " things Mito " . I also agree that it is

necessary to become informed about Mito because it is a quixotic disease

which isn't well understood in the medical community and it can serve us

well to be informed.

That having been said .... I would wonder whether *every* detail needs

to be recorded and whether it might be adviseable to start reducing your

entries and limiting them to major accomplishments, setbacks and goals.

I would wonder, however, if Marc is expressing his own denial and fears

for Abigail. His unwillingness to discuss what Abigail might or might

not be able to do may indicate that he cannot accept her limitations.

It sounds like you have a good relationship with Marc and that you have

good communication. Perhaps it is time to discuss *your **own** *

feelings relating to Mitochondrial Disease and how it is affecting

*you*... and leave your parenting direction of Abigail out of the

discussion. Perhaps *both* of you are coping with your feelings of

panic in unrealistic ways ... and need to put some energy into grounding

one another and helping each other towards acceptance of Mitochondrial

Disease in your lives. Abigail is being *well* parented and loved! She

will flourish despite her Mito or perhaps she will grow beyond what you

could ever hope for, *because* she has Mito!

My hat is off to your frankness and openness in discussing your pain

with us. I am sending a warm Canadian hug with this email!

Jean Shepherd

mr_lucy wrote:

> Hi Everyone...

>

> I am looking for some family advice from all of you.

>

> Over the last several months I have been studying Mito through every

> means possible. I read research papers, do internet searcher, write

> letter and make phone calls on a regular basis. I am driven to

> educate myself, and others. Though I put a lot of time and energy

> into my pursuit I don't allow it to interfere with other things.

> That said...last night my husband made comments that struck me and

> gave me pause.

>

> I began a page for Abigail to keep family and friends up to date on

> Abigail as well as our family. I include the good, the bad, and our

> hopes for the future. It has become my voice of joys and fears. Marc

> expressed with me a concern over the fact that I not only note the

> daily changes in Abigail, but that I announce them on the page. He

> shows great concern over offering Abigail the opportunity of

> normality. I agree with him completely in the arena of offering her

> a normal life. However I also feel this great need to educated and

> inform those who loves us concerning the true face of the disease in

> question. My approach to confronting and acknowledging the daily ups

> and downs in his view threaten his objective of normality.

>

> In addition I have been mildly chastised about discussing the

> disease in front of Abigail. Marc again doesn't want Abigail to feel

> that there are things that she can't so. In truth our conversations

> usually lean toward something I have read in relation to someone

> else. For instance I was talking to him about the article in Women's

> Day. I was most impressed with the way that family moves around

> obstacles. I expressed how there was much to learn from people who

> have found ways to excel. Marc quieted me, and told me that he

> didn't want to talk about what Abby can't or might not beablr to do.

> I was saddened because that was not the point of my expressions to

> him.

>

> I am quite sure that we are not the only people who have experienced

> a time such a this. I would like to hear of other people's

> experiences...how did you move beyond a difference without

> sacrificing you individual needs?

>

> Thank you for reading.

>

> Myst

>

[Guest guest]

--- Myst,

I am getting divorced so I am probably not the best one to give

advice about marriages and compromise. That being said, I think that

I had gone around never talking about anything for a long time. I

knew how sick was but very few others did. No one saw her if

she wasn't well. Well, you can only do this so long. Now, I do

journal online too. I try to keep to 3-4 times a week. I think it is

important for friends and family to hear the good and the bad. No

one seemed to understand how seriously ill she was because I never

talked about it, and then I couldn't understand how they weren't

more concerned and involved. I wouldn't let them be.

We talk about 's illness. We talk about future goals and

hopes and dreams. There are some days where we talk about poop all

day long-too much or lack there of. I think that if your husband is

not comfortable with these issues, maybe you can find someone who is

and talk about it when he is not present. My STBX could not and

still can not deal with this illness. It is just harder for some to

deal with.

It is very improtant not to put limits intended or not on your

children.My child wasn't supposed to live this long and here she is.

Never say never. I love the journal website and I will periodically

copy of the journals I have written for my records. It will be nice

t have a record of what we did, the accomplishments had and

the good and bad.

I hope you and your husband will be able to come compromise over

this issue. Good luck,

Dawn

[Guest guest]

--- Myst,

I am getting divorced so I am probably not the best one to give

advice about marriages and compromise. That being said, I think that

I had gone around never talking about anything for a long time. I

knew how sick was but very few others did. No one saw her if

she wasn't well. Well, you can only do this so long. Now, I do

journal online too. I try to keep to 3-4 times a week. I think it is

important for friends and family to hear the good and the bad. No

one seemed to understand how seriously ill she was because I never

talked about it, and then I couldn't understand how they weren't

more concerned and involved. I wouldn't let them be.

We talk about 's illness. We talk about future goals and

hopes and dreams. There are some days where we talk about poop all

day long-too much or lack there of. I think that if your husband is

not comfortable with these issues, maybe you can find someone who is

and talk about it when he is not present. My STBX could not and

still can not deal with this illness. It is just harder for some to

deal with.

It is very improtant not to put limits intended or not on your

children.My child wasn't supposed to live this long and here she is.

Never say never. I love the journal website and I will periodically

copy of the journals I have written for my records. It will be nice

t have a record of what we did, the accomplishments had and

the good and bad.

I hope you and your husband will be able to come compromise over

this issue. Good luck,

Dawn

[Guest guest]

--- Myst,

I am getting divorced so I am probably not the best one to give

advice about marriages and compromise. That being said, I think that

I had gone around never talking about anything for a long time. I

knew how sick was but very few others did. No one saw her if

she wasn't well. Well, you can only do this so long. Now, I do

journal online too. I try to keep to 3-4 times a week. I think it is

important for friends and family to hear the good and the bad. No

one seemed to understand how seriously ill she was because I never

talked about it, and then I couldn't understand how they weren't

more concerned and involved. I wouldn't let them be.

We talk about 's illness. We talk about future goals and

hopes and dreams. There are some days where we talk about poop all

day long-too much or lack there of. I think that if your husband is

not comfortable with these issues, maybe you can find someone who is

and talk about it when he is not present. My STBX could not and

still can not deal with this illness. It is just harder for some to

deal with.

It is very improtant not to put limits intended or not on your

children.My child wasn't supposed to live this long and here she is.

Never say never. I love the journal website and I will periodically

copy of the journals I have written for my records. It will be nice

t have a record of what we did, the accomplishments had and

the good and bad.

I hope you and your husband will be able to come compromise over

this issue. Good luck,

Dawn

[Guest guest]

YOU ARE WRITING MY LIFE STORY IN YOUR E MAIL. IT GAVE ME SUCH A WEIRD FEELING, I HAVE SAID SOME OF YOUR WORDS MANY, MANY TIMES. COLBY WILL BE 14 TOMARROW. YOU PROBABLY HAVE DOZENS OF FRIENDS BUT, I ONLY HAVE ONE, WHO I DON'T HARDLY SEE. THANKS FOR WRITING, I HAVEN'T READ THE EMAIL THAT YOU RESPONDED TO YET SO I GUESS I OUGHT TO DO THAT. I ALWAYS THINK THERE REALLY ISN'T A NORMAL FOR ANYONE. YOU ARE WHAT YOU ARE AND THAT IS YOUR NORMAL.

SEE YA

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy>From: mitooggo@... >Reply-To: Mito >To: Mito >Subject: Re: Families Not Seeing Eye to Eye All Thoughts Welcome >Date: Thu, 25 Mar 2004 13:58:14 EST > >Hi, > > I am a Mito mommy, of 3 Mito tigers, who has been one for 13 years now. >I felt like I was reading my own thoughts about 10 years ago when I read your >post. Let me tell you, You and your husband are not clones, thank goodness! > For my husband after several counseling sessions, he was finally able to >communicate with me what he really felt. He felt that it was too hard for him >to have to look at his beautiful little girls and boy and not be able to fix >what was wrong. He was the daddy, that was his job! He could fix wheels that >had come off of trucks and put back on broken dolly heads, but he couldn't fix >nor save them from this horrible thing that they were facing. He had failed >them as their daddy! So if he never looked at what they would be able to or >not be able to do, then it really wasn't there, and he wasn't a failure. If >that makes any sense at all. Its a mans way of dealing with it. Super daddy >couldn't change this so there was no this. It took him 9 years to finally >admit that this is what was going on inside him. Let me tell you I heard the >exact words from him that your hubby is saying to you. > For me I was the opposite, I was OK we have this funky thing robbing my >children of being "normal" so that's OK we will work around it. We will do >everything we can and rejoice in it, and the stuff we can't well we can kick >the cat or we can cry about it and get over it! We have done all of the >above. For years I did the doctors visits and hospitals all on my own, he would >not go near that cause that would mean he had to admit they were sick and not >perfect. I was like, I have the worlds most "perfect" children and I want >everyone to respect them for their accomplishments, and cry with me when we >couldn't reach one. I was almost to much the other way for a while. Hey my kid is >a Mito kid and look what he can do! What, your kid has a cold? Well, mine >has nuropathy but they are in school, kind of attitude. I have had to curve >that just a bit as I am a teacher and I would get so irritated when parents would >"baby" their child and not send them to school because they had a little cold >or cough or what ever. Heck if my kid can come to school on the drugs he >takes yours can come with a throat lasinger or cough drop! LOl > The doctors we see, at first n at children's Hospital Los >Angels we now and have for many years seen Rick Boles there, and Bruce Cohen >and their Ped. have always told me, you will have a healthier, mentally >healthier, child if you educate them about their illness. So that is the approach >we/I have taken with them from day one. Of course at a younger age they were >not told everything about their illness, but they were told they were sick, and >their bodies didn't work like most kids so we have to take this medicine and >spend some days in the hospital and that Pokies (IV'S) were our friends ect. >However now that Kira is 13, she is involved in almost every aspect of her >illness. You will know when is the right time to tell them a little more. I >think the most important piece of information Rick Boles every gave me was when he >said to me, " , they need to know they are sick, and why they are sick, >but they also need to know that there is the "can" part to them. They "can" >play, just not outside in the heat, they "can" go to school, just maybe not as >long as other kids, they "can" go to summer camp (Our newest thing for this >year to allow them to do, it has taken me this long to say OK to it, and I will >probably need a truck load of drugs to get through the weak for my own blood >pressure! LOLL) but may need to sit out a few of the activities. It is very >easy to focus on the negative things because you are grieving them. For me >with Kira it is her ability to have her own children, but she can adopt and be a >great mommy to a child who will need her someday. Let me tell you I would >not have been able to say that a few years ago because I was literally terrified >of her dying. I wasted a lot of time worried about that. If I can suggest >to you, my advice would be to try to stay more on the side of the "cans" >however if you never ever share the "cant's" you will explode. You have to find >that balance for you and them. He, your hubby will come along. Being a Mito >Parent I have come to realize is being in a state of constant morning, it is what >state do you chose to live in, and trust me I have lived in them all! >However, my favorite state is the "Look out world just watch us Live!" state. > I learned that when I shared every little accomplishment and missed one >with family and friends, that I burned them out as well. This sounds >terrible, but it is the truth. Because they don't live it like you do, they want to >be supportive to you and the kids, but they just can't because they are in a >way grateful that it is you and not them for one, can't imagine how on earth >you can do what you do as a Mito Mommy, and 3rd they don't have the emotional >tie to them that you have. Not even Grand ma and Grandpa, they have a much >different emotional bond then you the parent have. You have to be very careful >to share enough that they get it, but not so much that they run when they see >you coming cause they just can't take any more bad news, or "bragging/ >goodnews, that you have to share. It is a very fine line! The only place that I have >found that I can just let it all out is with other special needs moms, not >even my best friend, but special needs moms who can rejoice and cry with you, >because they get it! They live it and they understand you. We are a very >special breed of the female species trust me!LOL I don't really know what "normal" >is, we have never had nor lived it, so those moms irritate me just as much as >I irritate them cause I can't relate! I can dream and hope and wish and all >that good stuff, but I just can't relate cause My path is so very different >from theirs. It is OK too to be on the different path. It is OK to need to tell >people about your beautiful child and the cans and can'ts, It is OK to need >to write about it, just find the balance, it will be different for every >person, but if you look for it trust me you will find it. You will fall off of it >at times and things will get a bit crazy, but look for that white horse and get >back up on it as best you can. > We were told when Kira was first born by a doctor who we loved, that we >would be divorced within the first year of her life because the stress is too >much for a marriage to take. That is what statistics showed. Well, That was >enough for us to say well we will be one of the other statistics. We have >been married 15 years, there have been times I have wanted to kick him to the >curb for sure and I am sure in reverse for him, but we decided that no disease >was gonna change this family. It has been very hard at times and I am not >saying that we won't be that statistic, but it takes communication, and allowing >the other to grieve and deal in their own way, and so far we have made it. > Well, I don't know if this has helped you any or if it was just my >babbling, but your post was so familiar to me I wanted to respond. > >Big hugs to you and hang in there! > >big hugs to you, > > O > >When the door of happiness closes, another opens, but often times we spend so >much time looking at the closed door, we don't see the open door. Look for >the open doors! Find a broadband plan that fits. Great local deals on high-speed Internet access.

[Guest guest]

Say happy birthday to your 14 year old. Don't they grow up way too fast?! My oldest will be 16 next month! Hope he has a special day. Darla: mommy to Asenath, Zipporrah, and the gang Re: Families Not Seeing Eye to Eye All Thoughts Welcome >Date: Thu, 25 Mar 2004 13:58:14 EST > >Hi, > > I am a Mito mommy, of 3 Mito tigers, who has been one for 13 years now. >I felt like I was reading my own thoughts about 10 years ago when I read your >post. Let me tell you, You and your husband are not clones, thank goodness! > For my husband after several counseling sessions, he was finally able to >communicate with me what he really felt. He felt that it was too hard for him >to have to look at his beautiful little girls and boy and not be able to fix >what was wrong. He was the daddy, that was his job! He could fix wheels that >had come off of trucks and put back on broken dolly heads, but he couldn't fix >nor save them from this horrible thing that they were facing. He had failed >them as their daddy! So if he never looked at what they would be able to or >not be able to do, then it really wasn't there, and he wasn't a failure. If >that makes any sense at all. Its a mans way of dealing with it. Super daddy >couldn't change this so there was no this. It took him 9 years to finally >admit that this is what was going on inside him. Let me tell you I heard the >exact words from him that your hubby is saying to you. > For me I was the opposite, I was OK we have this funky thing robbing my >children of being "normal" so that's OK we will work around it. We will do >everything we can and rejoice in it, and the stuff we can't well we can kick >the cat or we can cry about it and get over it! We have done all of the >above. For years I did the doctors visits and hospitals all on my own, he would >not go near that cause that would mean he had to admit they were sick and not >perfect. I was like, I have the worlds most "perfect" children and I want >everyone to respect them for their accomplishments, and cry with me when we >couldn't reach one. I was almost to much the other way for a while. Hey my kid is >a Mito kid and look what he can do! What, your kid has a cold? Well, mine >has nuropathy but they are in school, kind of attitude. I have had to curve >that just a bit as I am a teacher and I would get so irritated when parents would >"baby" their child and not send them to school because they had a little cold >or cough or what ever. Heck if my kid can come to school on the drugs he >takes yours can come with a throat lasinger or cough drop! LOl > The doctors we see, at first n at children's Hospital Los >Angels we now and have for many years seen Rick Boles there, and Bruce Cohen >and their Ped. have always told me, you will have a healthier, mentally >healthier, child if you educate them about their illness. So that is the approach >we/I have taken with them from day one. Of course at a younger age they were >not told everything about their illness, but they were told they were sick, and >their bodies didn't work like most kids so we have to take this medicine and >spend some days in the hospital and that Pokies (IV'S) were our friends ect. >However now that Kira is 13, she is involved in almost every aspect of her >illness. You will know when is the right time to tell them a little more. I >think the most important piece of information Rick Boles every gave me was when he >said to me, " , they need to know they are sick, and why they are sick, >but they also need to know that there is the "can" part to them. They "can" >play, just not outside in the heat, they "can" go to school, just maybe not as >long as other kids, they "can" go to summer camp (Our newest thing for this >year to allow them to do, it has taken me this long to say OK to it, and I will >probably need a truck load of drugs to get through the weak for my own blood >pressure! LOLL) but may need to sit out a few of the activities. It is very >easy to focus on the negative things because you are grieving them. For me >with Kira it is her ability to have her own children, but she can adopt and be a >great mommy to a child who will need her someday. Let me tell you I would >not have been able to say that a few years ago because I was literally terrified >of her dying. I wasted a lot of time worried about that. If I can suggest >to you, my advice would be to try to stay more on the side of the "cans" >however if you never ever share the "cant's" you will explode. You have to find >that balance for you and them. He, your hubby will come along. Being a Mito >Parent I have come to realize is being in a state of constant morning, it is what >state do you chose to live in, and trust me I have lived in them all! >However, my favorite state is the "Look out world just watch us Live!" state. > I learned that when I shared every little accomplishment and missed one >with family and friends, that I burned them out as well. This sounds >terrible, but it is the truth. Because they don't live it like you do, they want to >be supportive to you and the kids, but they just can't because they are in a >way grateful that it is you and not them for one, can't imagine how on earth >you can do what you do as a Mito Mommy, and 3rd they don't have the emotional >tie to them that you have. Not even Grand ma and Grandpa, they have a much >different emotional bond then you the parent have. You have to be very careful >to share enough that they get it, but not so much that they run when they see >you coming cause they just can't take any more bad news, or "bragging/ >goodnews, that you have to share. It is a very fine line! The only place that I have >found that I can just let it all out is with other special needs moms, not >even my best friend, but special needs moms who can rejoice and cry with you, >because they get it! They live it and they understand you. We are a very >special breed of the female species trust me!LOL I don't really know what "normal" >is, we have never had nor lived it, so those moms irritate me just as much as >I irritate them cause I can't relate! I can dream and hope and wish and all >that good stuff, but I just can't relate cause My path is so very different >from theirs. It is OK too to be on the different path. It is OK to need to tell >people about your beautiful child and the cans and can'ts, It is OK to need >to write about it, just find the balance, it will be different for every >person, but if you look for it trust me you will find it. You will fall off of it >at times and things will get a bit crazy, but look for that white horse and get >back up on it as best you can. > We were told when Kira was first born by a doctor who we loved, that we >would be divorced within the first year of her life because the stress is too >much for a marriage to take. That is what statistics showed. Well, That was >enough for us to say well we will be one of the other statistics. We have >been married 15 years, there have been times I have wanted to kick him to the >curb for sure and I am sure in reverse for him, but we decided that no disease >was gonna change this family. It has been very hard at times and I am not >saying that we won't be that statistic, but it takes communication, and allowing >the other to grieve and deal in their own way, and so far we have made it. > Well, I don't know if this has helped you any or if it was just my >babbling, but your post was so familiar to me I wanted to respond. > >Big hugs to you and hang in there! > >big hugs to you, > > O > >When the door of happiness closes, another opens, but often times we spend so >much time looking at the closed door, we don't see the open door. Look for >the open doors! Find a broadband plan that fits. Great local deals on high-speed Internet access. Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Thanks ! I needed that, Colby is having extreme respiratory problems so I'm a little stressed, and bless his heart tomarriw is his birthday.

thanks!

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy>From: mitooggo@... >Reply-To: Mito >To: Mito >Subject: Re: Families Not Seeing Eye to Eye All Thoughts Welcome >Date: Thu, 25 Mar 2004 15:15:16 EST > >Hey, I hear you on the friend thing, I have a few close friends but not many, >my friends really come from the list here of moms I have developed a >relationship with through the years of this Mito thing. It is really sad, but the >general population can't handle the stress it is to be our friend is what I have >come to the conclusion of. Only my Mito friends really know what is going on >with us. My other friends always get an answer of we are hanging thanks for >asking. That's all they really want to know anyway. I hope you can develop >some strong Mito mommy friends, they are so valuable to me and forgiving when I >am in a state that I just need to let it out sometimes. I can be your friend! > LOL Just an email away! > > > >big hugs to you, > > O > >When the door of happiness closes, another opens, but often times we spend so >much time looking at the closed door, we don't see the open door. Look for >the open doors! Get tax tips, tools and access to IRS forms – all in one place at MSN Money!

[Guest guest]

Thanks ! I needed that, Colby is having extreme respiratory problems so I'm a little stressed, and bless his heart tomarriw is his birthday.

thanks!

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy>From: mitooggo@... >Reply-To: Mito >To: Mito >Subject: Re: Families Not Seeing Eye to Eye All Thoughts Welcome >Date: Thu, 25 Mar 2004 15:15:16 EST > >Hey, I hear you on the friend thing, I have a few close friends but not many, >my friends really come from the list here of moms I have developed a >relationship with through the years of this Mito thing. It is really sad, but the >general population can't handle the stress it is to be our friend is what I have >come to the conclusion of. Only my Mito friends really know what is going on >with us. My other friends always get an answer of we are hanging thanks for >asking. That's all they really want to know anyway. I hope you can develop >some strong Mito mommy friends, they are so valuable to me and forgiving when I >am in a state that I just need to let it out sometimes. I can be your friend! > LOL Just an email away! > > > >big hugs to you, > > O > >When the door of happiness closes, another opens, but often times we spend so >much time looking at the closed door, we don't see the open door. Look for >the open doors! Get tax tips, tools and access to IRS forms – all in one place at MSN Money!

[Guest guest]

Thanks ! I needed that, Colby is having extreme respiratory problems so I'm a little stressed, and bless his heart tomarriw is his birthday.

thanks!

mom to Colby,13,COXIV,LCHAD,ACC,ADHD ,hypothroidism and osteopenia. Chad, 16, healthy, Caleb, 10, also healthy>From: mitooggo@... >Reply-To: Mito >To: Mito >Subject: Re: Families Not Seeing Eye to Eye All Thoughts Welcome >Date: Thu, 25 Mar 2004 15:15:16 EST > >Hey, I hear you on the friend thing, I have a few close friends but not many, >my friends really come from the list here of moms I have developed a >relationship with through the years of this Mito thing. It is really sad, but the >general population can't handle the stress it is to be our friend is what I have >come to the conclusion of. Only my Mito friends really know what is going on >with us. My other friends always get an answer of we are hanging thanks for >asking. That's all they really want to know anyway. I hope you can develop >some strong Mito mommy friends, they are so valuable to me and forgiving when I >am in a state that I just need to let it out sometimes. I can be your friend! > LOL Just an email away! > > > >big hugs to you, > > O > >When the door of happiness closes, another opens, but often times we spend so >much time looking at the closed door, we don't see the open door. Look for >the open doors! Get tax tips, tools and access to IRS forms – all in one place at MSN Money!