re: Kennedy

[Guest guest]

God Bless you Ayars. You have been through so much.

Love,

[Guest guest]

Dear

you said:

Anyway, we have been thru a good bit with Kennedy and have reached apeaceful acceptance that she is sick, she is dying, and we can do everythingwe can but no magic bullet is going to drop out of the sky.

(((HUGS)))

you said

It's the other girls gettingmarried and asking Ann and I about children. Oh, Lord, what do we tellthem? We don't know how this disease finds it's way thru the generations,what their chances are of being carriers, anything. I don't have a lot ofheart left and just can't stand the thought of not doing all we can do tolearn enough about Kennedy to pass it along to the other girls later.I dont know if it is possible but can you get it from blood tests or something from you and your wife? I went ahead and got a biopsy with just to find out a diagnosis. It nearly killed him at the time. But I got the diagnosis, and I consider it important that I did because I now know that all my children and all my daughter's children will be affected by this unless my daughter does the artificial insemination route with somebody elses mito or whatever from a donor egg. ( I have had my tubes tied personally) I have wondered tho if they could have gotten the diagnosis later from his autopsy and spared him the biopsy but looking back never solved anything cant change it sigh. (plus dont know if that is possible.) We already knew it was a mito defect because two children of mine born to two different fathers had Leighs disease and then later of course a third. But still at the time I felt it important to find out for my other childrens sake. I know this isnt answering your question and I am sorry this just sort of came out a blurb The thing is, I mainly have prayed for a way to prevent and/or cure the problem so that when my daughter starts having children she just wont have to worry either way. But still, can you also just postpone the appt. until Kennedy is doing better? I mean why add more stress at this time when you can postpone the appointment? or is this feasible considering how long it probably takes to get an appointment with Dr. Shoffner? Plus, the truth is, even knowing there was a possibility of having children with problems I still would have had them, and I think my daughter is the same way. I just cant stand the thought of having more myself.

you said

To be painfully direct, we have been thru so much with Kennedy that we havegiven up hopeThere is something to be said about giving up hope in the idea that they are going to live when it is obvious they are going to die. I dont want to tick anyone off, but there is something to be said for acceptance. It doesnt mean you should give up trying to improve their lives, etc. It just means that you accept that there comes a time when you cant do any more and that it is all in God's hands now. I am all for getting the best medical treatment, but emotionally it helps and makes it easier to spend good quality time and helps you appreciate every moment with them that you possibly can. My first one with Leighs disease I never gave up trying and was devastated beyond belief when she died the second one with it the same thing, I worked really hard for optimum care for all three of them, but with the third one I accepted earlier on that she was dying, and it was easier to deal with. In my humble opinion, the grieving process starts before they die really because you are grieving for what will never be, a normal healthy child that will never get the full life span. Acceptance makes it easier but never easy! never never never easy! The truth is that when your child dies a part of you dies too. You have a black hole where your heart is, you discover that heartaches are real and physical and you feel like you are dying when in actuality you are having to live through it. It is I believe about the hardest thing in the world to deal with. The only consolation is the child is in heaven and better off. and truthfully that isnt that much of a consolation early on. You dont sleep, because every time you do, your child is in your mind. I am sorry this has gone on for such a long time this letter I mean, I am pouring out to you all because March is the hardest month it and November for me. Two of my chilren that died were born in March, one died in March, and in November two died in that month the other was born in May so I always get well melancholy in March and November. Sorry if I have depressed anyone.

Ayars

[Guest guest]

gina,

thank you so much for sharing your story. I don't think it 'depresses' anyone. May hit home for some and give others something to ponder.

My heart goes out to you and thanks you for sharing with the rest of us.

H

re: Kennedy

Dear

you said:

Anyway, we have been thru a good bit with Kennedy and have reached apeaceful acceptance that she is sick, she is dying, and we can do everythingwe can but no magic bullet is going to drop out of the sky.

(((HUGS)))

you said

It's the other girls gettingmarried and asking Ann and I about children. Oh, Lord, what do we tellthem? We don't know how this disease finds it's way thru the generations,what their chances are of being carriers, anything. I don't have a lot ofheart left and just can't stand the thought of not doing all we can do tolearn enough about Kennedy to pass it along to the other girls later.I dont know if it is possible but can you get it from blood tests or something from you and your wife? I went ahead and got a biopsy with just to find out a diagnosis. It nearly killed him at the time. But I got the diagnosis, and I consider it important that I did because I now know that all my children and all my daughter's children will be affected by this unless my daughter does the artificial insemination route with somebody elses mito or whatever from a donor egg. ( I have had my tubes tied personally) I have wondered tho if they could have gotten the diagnosis later from his autopsy and spared him the biopsy but looking back never solved anything cant change it sigh. (plus dont know if that is possible.) We already knew it was a mito defect because two children of mine born to two different fathers had Leighs disease and then later of course a third. But still at the time I felt it important to find out for my other childrens sake. I know this isnt answering your question and I am sorry this just sort of came out a blurb The thing is, I mainly have prayed for a way to prevent and/or cure the problem so that when my daughter starts having children she just wont have to worry either way. But still, can you also just postpone the appt. until Kennedy is doing better? I mean why add more stress at this time when you can postpone the appointment? or is this feasible considering how long it probably takes to get an appointment with Dr. Shoffner? Plus, the truth is, even knowing there was a possibility of having children with problems I still would have had them, and I think my daughter is the same way. I just cant stand the thought of having more myself.

you said

To be painfully direct, we have been thru so much with Kennedy that we havegiven up hopeThere is something to be said about giving up hope in the idea that they are going to live when it is obvious they are going to die. I dont want to tick anyone off, but there is something to be said for acceptance. It doesnt mean you should give up trying to improve their lives, etc. It just means that you accept that there comes a time when you cant do any more and that it is all in God's hands now. I am all for getting the best medical treatment, but emotionally it helps and makes it easier to spend good quality time and helps you appreciate every moment with them that you possibly can. My first one with Leighs disease I never gave up trying and was devastated beyond belief when she died the second one with it the same thing, I worked really hard for optimum care for all three of them, but with the third one I accepted earlier on that she was dying, and it was easier to deal with. In my humble opinion, the grieving process starts before they die really because you are grieving for what will never be, a normal healthy child that will never get the full life span. Acceptance makes it easier but never easy! never never never easy! The truth is that when your child dies a part of you dies too. You have a black hole where your heart is, you discover that heartaches are real and physical and you feel like you are dying when in actuality you are having to live through it. It is I believe about the hardest thing in the world to deal with. The only consolation is the child is in heaven and better off. and truthfully that isnt that much of a consolation early on. You dont sleep, because every time you do, your child is in your mind. I am sorry this has gone on for such a long time this letter I mean, I am pouring out to you all because March is the hardest month it and November for me. Two of my chilren that died were born in March, one died in March, and in November two died in that month the other was born in May so I always get well melancholy in March and November. Sorry if I have depressed anyone.

Ayars

Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease.

[Guest guest]

In a message dated 03/01/2000 10:33:54 AM Pacific Standard Time,

Dillr@... writes:

> God Bless you Ayars. You have been through so much.

> Love,

>

>

My thoughts exactly. Thank you for sharing with us, . It is not

depressing . . . it gives me hope that I can manage this when the going is

hard. You are managing and you are still reaching out and helping others. I

admire you.

Kathy C.

mom to and