Re: How do you keep the joy in your lives

[Guest guest]

I could write an epistle on this subject, but will try to summarize. I have

" pulled away " some to have as normal life as possible. I went from being a

SAHM to going to school full time in something I love; have regular

childcare; take frequent trips to visit friends (either alone or with

hubby); go out on " dates " with hubby. I am very fortunate to have a very

supportive mother-in-law who is relocating to live near us to essentially be

our child's " nanny " for the next year when I will finish school. And, I

realize this is somewhat controversial, but I have reduced therapies

drastically. I will start again soon, but am taking a hiatus for a couple

months because it was getting too overwhelming. has made more

progress since we stopped than at any point previously when we were doing 4

plus therapies/week!

When I am with the kids, I do as much of the " normal " stuff as

possible--shopping, Mc's, movies, museums, parks. I take him and his

older " normal " brother to fun places and try to treat them the same.

I fear that I sound like a hands-off mother, but I think is happier

this way. Whoever is watching him, whether it be father, mother, child-care

provider, grandmother---they really want to be with him and shower him with

love. Meanwhile, I feel like a regular person instead of only the mother of

a child with special needs.

I know of other mothers who have totally thrown themselves into caring for

their special children so that all the joy has been eeked out of their

existence. Sometimes I think they are actually seeking out attention for

themselves. But I digress . . . . What has worked for me is sharing the

" burden " so to speak, but also the love that your child offers.

Take care, Lori and (complex I and IV, 2 1/2 years)

How do you keep the joy in your lives

> O.K. This is what I would like to know. With all the grief from the

> insurance companies, the doctors, nurses, the husbands, (who just sit on

> the couch in front of the TV while you're being stressed beyond belief),

> the social workers, the bad days, the really bad days, the cashier @

> Walmart, etc, etc, how do you continue to bring joy to your child's

> life, or even to your own life? We don't want to just bring our children

> to doctors, PT, OT, and push the meds.... I'm curious where the people

> on the list get their support to have enriched satisfying lives.

> Friends, family, a long bath? Of course our children bring us joy . Is

> it about developing a philosophy or is it just getting through each day?

> Denial? Acceptance? I imagine it's different for everyone. I would love

> to hear how you keep the joy in your lives! Thanks.

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

I could write an epistle on this subject, but will try to summarize. I have

" pulled away " some to have as normal life as possible. I went from being a

SAHM to going to school full time in something I love; have regular

childcare; take frequent trips to visit friends (either alone or with

hubby); go out on " dates " with hubby. I am very fortunate to have a very

supportive mother-in-law who is relocating to live near us to essentially be

our child's " nanny " for the next year when I will finish school. And, I

realize this is somewhat controversial, but I have reduced therapies

drastically. I will start again soon, but am taking a hiatus for a couple

months because it was getting too overwhelming. has made more

progress since we stopped than at any point previously when we were doing 4

plus therapies/week!

When I am with the kids, I do as much of the " normal " stuff as

possible--shopping, Mc's, movies, museums, parks. I take him and his

older " normal " brother to fun places and try to treat them the same.

I fear that I sound like a hands-off mother, but I think is happier

this way. Whoever is watching him, whether it be father, mother, child-care

provider, grandmother---they really want to be with him and shower him with

love. Meanwhile, I feel like a regular person instead of only the mother of

a child with special needs.

I know of other mothers who have totally thrown themselves into caring for

their special children so that all the joy has been eeked out of their

existence. Sometimes I think they are actually seeking out attention for

themselves. But I digress . . . . What has worked for me is sharing the

" burden " so to speak, but also the love that your child offers.

Take care, Lori and (complex I and IV, 2 1/2 years)

How do you keep the joy in your lives

> O.K. This is what I would like to know. With all the grief from the

> insurance companies, the doctors, nurses, the husbands, (who just sit on

> the couch in front of the TV while you're being stressed beyond belief),

> the social workers, the bad days, the really bad days, the cashier @

> Walmart, etc, etc, how do you continue to bring joy to your child's

> life, or even to your own life? We don't want to just bring our children

> to doctors, PT, OT, and push the meds.... I'm curious where the people

> on the list get their support to have enriched satisfying lives.

> Friends, family, a long bath? Of course our children bring us joy . Is

> it about developing a philosophy or is it just getting through each day?

> Denial? Acceptance? I imagine it's different for everyone. I would love

> to hear how you keep the joy in your lives! Thanks.

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

WARNING...WHAT i AM ABOUT TO WRITE MENTIONS GOD A LOT AND IF YOU MIGHT BE

OFFENDED, PLEASE JUST DELETE THIS POST...THIS IS MEANT TO ENCOURAGE AND

ANSWER THE SUBJECT IN THE TITLE LINE...

Below is an excerpt from my journal last night...thought it might help, even

if in only knowing we are not alone...

05.08.02

We picked up Bliss a year ago today! Seems like a millions years and just

yesterdal, all at the same time. She has brought a lot to our lives and has

probably had a pretty s trange year but I guess he doens't know differently.

We got a call last week that she has a blood disease called

Thalassemia...normally they would test the parents to find out how severe it

is but since they can't, they are not exactly sure what they are doing. We

have some more tests Friday and are waiting for the results. It's absolutely

overwhelming to me to think abou thte possibility of heavy care with this

especially coupled with 's needs that are more complicated as time goes

on. I can't even imagine how it would happen..I am so overwhelmed in the

natural! I am trying not to think too much about it until we know for sure.

My love for God is steadfast--I have no desire to doubt God's plan--he is

still on the throne! I am frustrated with all t his and I am tired and i am

wondering when the DEVIL is going to understand that none of this has or

will make us leave God--what will make him give up? Haven't we proved

ourselves? I feel like most of the time we have glorified God, aside from an

occasional panic on my part! But dear Jane always pulls me over to

the other side--she is always standing i nthe gap--my dear friend, my mentor!

When we got this latest info on Bliss--we both remember that i asked God to

expand my territory and here he is doing it again!

On another note, after many very frustrating conversations iwth Dr

Eastmead and Dr Livingston, the Holy Spirit reminded me I had a brain and I

hopped in the car and went and bought some coQ10. We started it five days

ago and has been able to put his socks on all by himself two times

(hasn't done that since November)...not much to most people, but definitely a

blessing in my mind. His mind seems slightly clearer--we will see what else

happens. I expect to put him on a full cocktail after dxs and the mito

conference. Dr Livingston keeps trying to convince me that Dr Shoffner wont

find a dx and 'i hate to see you put all your eggs in one basket'...I told

him that i was under the impression that there werent' any other baskets, he

agreed. He is Dr Gloom and Doom! Stupid to say something based solely on

your ignorance of a subject! All of the mito moms have assured me that Dr S

wont take a case unless he thinks you have mito, so that encourages me. I am

more at peace and just have to shut out Dr L and Dr E--both of who are

paralyzed by thier lack of knowlege over 's problems. God is on the

throne and is using and our family to make grown men humble! "

******************************************************************************

*****************

hope no one minds me sharing that...here are a few tips I have learned...

I take breaks...sometimes they are scheduled times out with a girlfriend or

something and sometimes, Fred walks in the door and I just have to get out!

Communicate with your spouse about how hard it is and what you need for him

to help you...

Get a mentor...mine is about 15 years older than me and a powerful woman of

faith!

Do something for yourself, some creative is even better!

Read the bible if you are Christian and remind God of his promises to you! I

am workin gon this...

I have recently learned to train myself to discard all the extra junk in my

head and not to retain new things unless they are important and if they can

written down and then discarded later I don't even try to remember it!

One other thing...I love this quote from a good preacher I know... " The most

effective preaching you can ever do is to live a life that cannot be

explained without God " that inspires me b/c I want people to think that of

me!

thanks for sticking with this long email!

deb

[Guest guest]

I'm crying as I write this. (This is something near and dear to my heart -- I think about this every day.) You're right -- each day is a struggle and the balance between therapies and doctors and family is hard. I often wonder if I'm cheating my 4 year old out of the time she desirves. I am constantly dragging her to my sons appointments and I don't think it's fair to her. Not to mention when is there time to just be a family, or just be a wife, or to be yourself. And yes, I too spend countless hours on the phone to the insurance company and the hospitals. However, I think I have found a workable balance -- it kills me to send my daughter to pre-school 5 days a week (morning only) but I'm hoping that this will allow me to get all of 's therapies and appointments out of the way before she comes home each day. As for myself, my husband gives me mini-vacations. They are usually just for a weekend. Last time my husband took the kids to grandma's house for the weekend (he stayed with the kids). I had the house all to myself from Friday afternoon to Sunday night. I rented movies, ate lots of ice cream and pizza and really had a relaxing time. I was ready to face my life again on Monday morning. As for friends -- they also help. When is in the hospital my daughter usually stays at a friends house. When we come home from the hospital my friends usually fix us dinner for a couple of days. My best friend will even suprise me and pop over in the morning and take the kids for the day -- just as a gift to me. (She has learned how to do tube feedings, learned sign language, how to take care of his implant and his eyes.) She's my guardian angel.

I don't know what your faith is --- but I thank God every night for my son and all of his problems. I wouldn't trade him for anything. I had 3 misscarriages before was born and feel that God was preparing me for the son I was going to have. During the misscarriages my faith wavered -- I would question God's plan for my life. But now I know that I wasn't ready then for and his special needs. I am a different person today. I believe that eventhough has his problem that God is helping me find solutions. I don't know where I would be without my faith.

Sue Ann

How do you keep the joy in your lives

O.K. This is what I would like to know. With all the grief from theinsurance companies, the doctors, nurses, the husbands, (who just sit onthe couch in front of the TV while you're being stressed beyond belief),the social workers, the bad days, the really bad days, the cashier @Walmart, etc, etc, how do you continue to bring joy to your child'slife, or even to your own life? We don't want to just bring our childrento doctors, PT, OT, and push the meds.... I'm curious where the peopleon the list get their support to have enriched satisfying lives.Friends, family, a long bath? Of course our children bring us joy . Isit about developing a philosophy or is it just getting through each day?Denial? Acceptance? I imagine it's different for everyone. I would loveto hear how you keep the joy in your lives! Thanks.Please contact mito-owner with any problems or questions.

[Guest guest]

I'm crying as I write this. (This is something near and dear to my heart -- I think about this every day.) You're right -- each day is a struggle and the balance between therapies and doctors and family is hard. I often wonder if I'm cheating my 4 year old out of the time she desirves. I am constantly dragging her to my sons appointments and I don't think it's fair to her. Not to mention when is there time to just be a family, or just be a wife, or to be yourself. And yes, I too spend countless hours on the phone to the insurance company and the hospitals. However, I think I have found a workable balance -- it kills me to send my daughter to pre-school 5 days a week (morning only) but I'm hoping that this will allow me to get all of 's therapies and appointments out of the way before she comes home each day. As for myself, my husband gives me mini-vacations. They are usually just for a weekend. Last time my husband took the kids to grandma's house for the weekend (he stayed with the kids). I had the house all to myself from Friday afternoon to Sunday night. I rented movies, ate lots of ice cream and pizza and really had a relaxing time. I was ready to face my life again on Monday morning. As for friends -- they also help. When is in the hospital my daughter usually stays at a friends house. When we come home from the hospital my friends usually fix us dinner for a couple of days. My best friend will even suprise me and pop over in the morning and take the kids for the day -- just as a gift to me. (She has learned how to do tube feedings, learned sign language, how to take care of his implant and his eyes.) She's my guardian angel.

I don't know what your faith is --- but I thank God every night for my son and all of his problems. I wouldn't trade him for anything. I had 3 misscarriages before was born and feel that God was preparing me for the son I was going to have. During the misscarriages my faith wavered -- I would question God's plan for my life. But now I know that I wasn't ready then for and his special needs. I am a different person today. I believe that eventhough has his problem that God is helping me find solutions. I don't know where I would be without my faith.

Sue Ann

How do you keep the joy in your lives

O.K. This is what I would like to know. With all the grief from theinsurance companies, the doctors, nurses, the husbands, (who just sit onthe couch in front of the TV while you're being stressed beyond belief),the social workers, the bad days, the really bad days, the cashier @Walmart, etc, etc, how do you continue to bring joy to your child'slife, or even to your own life? We don't want to just bring our childrento doctors, PT, OT, and push the meds.... I'm curious where the peopleon the list get their support to have enriched satisfying lives.Friends, family, a long bath? Of course our children bring us joy . Isit about developing a philosophy or is it just getting through each day?Denial? Acceptance? I imagine it's different for everyone. I would loveto hear how you keep the joy in your lives! Thanks.Please contact mito-owner with any problems or questions.

[Guest guest]

Deb,

Thanks for sharing your thoughts.......ditto, ditto, ditto!

Horsley

[Guest guest]

Wow. That is a post I can relate to. Yesterday I was feeling pretty low. Definitely not feeling much joy. I was so sick of it all that I crawled into bed about 1pm and left hubby in charge of Jessalyn. The house was a disaster and he really wanted me to get up and clean a little. He begged, he pleaded, and finally he put Jessalyn in her swing and cleaned up himself while I had a good cry and slept for an hour. It helped. Joy is elusive these days. Sometimes the weight of it all is just unbearable and I don't think I can go another step. That is when I pray. I know there is another list for mito believers, and actually I'm not on that list yet, but just let me say briefly if there is to be a discussion of joy, for me anyway, to trust in God and know he has his purposes is the only way to get through this with true joy. The rest is just coping (which I often fail miserably at).

from Maine

Mom to: Johanna (6 yrs), Jareb (2 yrs), and Jessalyn age 6 months w/mitochondrial myopathy, fundo and g-tube, severe GI pain of unknown origin, developmental delay, sensory integration issues, and a possible seizure disorder

How do you keep the joy in your lives

O.K. This is what I would like to know. With all the grief from theinsurance companies, the doctors, nurses, the husbands, (who just sit onthe couch in front of the TV while you're being stressed beyond belief),the social workers, the bad days, the really bad days, the cashier @Walmart, etc, etc, how do you continue to bring joy to your child'slife, or even to your own life? We don't want to just bring our childrento doctors, PT, OT, and push the meds.... I'm curious where the peopleon the list get their support to have enriched satisfying lives.Friends, family, a long bath? Of course our children bring us joy . Isit about developing a philosophy or is it just getting through each day?Denial? Acceptance? I imagine it's different for everyone. I would loveto hear how you keep the joy in your lives! Thanks.Please contact mito-owner with any problems or questions.

[Guest guest]

As an addendum to my earlier post . . . on days where is really

sick, all of the above goes out the window! I just try to survive hour to

hour. Just happen to be going through that right now as is screaming

nonstop with an ear infection. Hang in there, Lori

Re: How do you keep the joy in your lives

or questions.

>

>

[Guest guest]

it sounds funny but having emmy(diagnosed with leigh's disease at 10 months --now 7)

in our lives has actually increased the joy in our lives by tenfold---of course , since her birth I have also experienced more pain , anger, and sheer terror than ever before in my life.

em has taught her sisters ,my husband and I how to live each day as if it is your first( okay, its taking myhusband a little longer! )I agree with the others who responded in that it helps tremendously to have a strong faith in God. make sure you have a strong support network of friends and family so when you just can't be superwoman anymore you have people to turn to and most importantly to laugh with. as horrible as it all can get sometimes , whenever I am asked how we keep the joy in our lives,I imagine how joyless life would be without my emmy in it.

Lori Cutillo wrote: As an addendum to my earlier post . . . on days where is reallysick, all of the above goes out the window! I just try to survive hour tohour. Just happen to be going through that right now as is screamingnonstop with an ear infection. Hang in there, Lori Re: How do you keep the joy in your livesor questions.>>

[Guest guest]

it sounds funny but having emmy(diagnosed with leigh's disease at 10 months --now 7)

in our lives has actually increased the joy in our lives by tenfold---of course , since her birth I have also experienced more pain , anger, and sheer terror than ever before in my life.

em has taught her sisters ,my husband and I how to live each day as if it is your first( okay, its taking myhusband a little longer! )I agree with the others who responded in that it helps tremendously to have a strong faith in God. make sure you have a strong support network of friends and family so when you just can't be superwoman anymore you have people to turn to and most importantly to laugh with. as horrible as it all can get sometimes , whenever I am asked how we keep the joy in our lives,I imagine how joyless life would be without my emmy in it.

Lori Cutillo wrote: As an addendum to my earlier post . . . on days where is reallysick, all of the above goes out the window! I just try to survive hour tohour. Just happen to be going through that right now as is screamingnonstop with an ear infection. Hang in there, Lori Re: How do you keep the joy in your livesor questions.>>

[Guest guest]

Deb,

Thank you for your post. I agree wholeheartedly with you views on faith and

remind myself daily of the blessing of having a year with Lochie.

Donna (mum to Lochie 7/20/00 - 7/20/01)

Re: How do you keep the joy in your lives

> WARNING...WHAT i AM ABOUT TO WRITE MENTIONS GOD A LOT AND IF YOU MIGHT BE

> OFFENDED, PLEASE JUST DELETE THIS POST...THIS IS MEANT TO ENCOURAGE AND

> ANSWER THE SUBJECT IN THE TITLE LINE...

>

>

>

>

>

> Below is an excerpt from my journal last night...thought it might help,

even

> if in only knowing we are not alone...

>

> 05.08.02

> We picked up Bliss a year ago today! Seems like a millions years and just

> yesterdal, all at the same time. She has brought a lot to our lives and

has

> probably had a pretty s trange year but I guess he doens't know

differently.

> We got a call last week that she has a blood disease called

> Thalassemia...normally they would test the parents to find out how severe

it

> is but since they can't, they are not exactly sure what they are doing.

We

> have some more tests Friday and are waiting for the results. It's

absolutely

> overwhelming to me to think abou thte possibility of heavy care with this

> especially coupled with 's needs that are more complicated as time

goes

> on. I can't even imagine how it would happen..I am so overwhelmed in the

> natural! I am trying not to think too much about it until we know for

sure.

> My love for God is steadfast--I have no desire to doubt God's plan--he is

> still on the throne! I am frustrated with all t his and I am tired and i

am

> wondering when the DEVIL is going to understand that none of this has or

> will make us leave God--what will make him give up? Haven't we proved

> ourselves? I feel like most of the time we have glorified God, aside from

an

> occasional panic on my part! But dear Jane always pulls me over

to

> the other side--she is always standing i nthe gap--my dear friend, my

mentor!

> When we got this latest info on Bliss--we both remember that i asked God

to

> expand my territory and here he is doing it again!

> On another note, after many very frustrating conversations iwth Dr

> Eastmead and Dr Livingston, the Holy Spirit reminded me I had a brain and

I

> hopped in the car and went and bought some coQ10. We started it five days

> ago and has been able to put his socks on all by himself two times

> (hasn't done that since November)...not much to most people, but

definitely a

> blessing in my mind. His mind seems slightly clearer--we will see what

else

> happens. I expect to put him on a full cocktail after dxs and the mito

> conference. Dr Livingston keeps trying to convince me that Dr Shoffner

wont

> find a dx and 'i hate to see you put all your eggs in one basket'...I told

> him that i was under the impression that there werent' any other baskets,

he

> agreed. He is Dr Gloom and Doom! Stupid to say something based solely on

> your ignorance of a subject! All of the mito moms have assured me that Dr

S

> wont take a case unless he thinks you have mito, so that encourages me. I

am

> more at peace and just have to shut out Dr L and Dr E--both of who are

> paralyzed by thier lack of knowlege over 's problems. God is on the

> throne and is using and our family to make grown men humble! "

>

****************************************************************************

**

>

> *****************

>

> hope no one minds me sharing that...here are a few tips I have learned...

>

> I take breaks...sometimes they are scheduled times out with a girlfriend

or

> something and sometimes, Fred walks in the door and I just have to get

out!

>

> Communicate with your spouse about how hard it is and what you need for

him

> to help you...

>

> Get a mentor...mine is about 15 years older than me and a powerful woman

of

> faith!

>

> Do something for yourself, some creative is even better!

>

> Read the bible if you are Christian and remind God of his promises to you!

I

> am workin gon this...

>

> I have recently learned to train myself to discard all the extra junk in

my

> head and not to retain new things unless they are important and if they

can

> written down and then discarded later I don't even try to remember it!

>

> One other thing...I love this quote from a good preacher I know... " The

most

> effective preaching you can ever do is to live a life that cannot be

> explained without God " that inspires me b/c I want people to think that

of

> me!

>

> thanks for sticking with this long email!

> deb

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

Deb,

Thank you for your post. I agree wholeheartedly with you views on faith and

remind myself daily of the blessing of having a year with Lochie.

Donna (mum to Lochie 7/20/00 - 7/20/01)

Re: How do you keep the joy in your lives

> WARNING...WHAT i AM ABOUT TO WRITE MENTIONS GOD A LOT AND IF YOU MIGHT BE

> OFFENDED, PLEASE JUST DELETE THIS POST...THIS IS MEANT TO ENCOURAGE AND

> ANSWER THE SUBJECT IN THE TITLE LINE...

>

>

>

>

>

> Below is an excerpt from my journal last night...thought it might help,

even

> if in only knowing we are not alone...

>

> 05.08.02

> We picked up Bliss a year ago today! Seems like a millions years and just

> yesterdal, all at the same time. She has brought a lot to our lives and

has

> probably had a pretty s trange year but I guess he doens't know

differently.

> We got a call last week that she has a blood disease called

> Thalassemia...normally they would test the parents to find out how severe

it

> is but since they can't, they are not exactly sure what they are doing.

We

> have some more tests Friday and are waiting for the results. It's

absolutely

> overwhelming to me to think abou thte possibility of heavy care with this

> especially coupled with 's needs that are more complicated as time

goes

> on. I can't even imagine how it would happen..I am so overwhelmed in the

> natural! I am trying not to think too much about it until we know for

sure.

> My love for God is steadfast--I have no desire to doubt God's plan--he is

> still on the throne! I am frustrated with all t his and I am tired and i

am

> wondering when the DEVIL is going to understand that none of this has or

> will make us leave God--what will make him give up? Haven't we proved

> ourselves? I feel like most of the time we have glorified God, aside from

an

> occasional panic on my part! But dear Jane always pulls me over

to

> the other side--she is always standing i nthe gap--my dear friend, my

mentor!

> When we got this latest info on Bliss--we both remember that i asked God

to

> expand my territory and here he is doing it again!

> On another note, after many very frustrating conversations iwth Dr

> Eastmead and Dr Livingston, the Holy Spirit reminded me I had a brain and

I

> hopped in the car and went and bought some coQ10. We started it five days

> ago and has been able to put his socks on all by himself two times

> (hasn't done that since November)...not much to most people, but

definitely a

> blessing in my mind. His mind seems slightly clearer--we will see what

else

> happens. I expect to put him on a full cocktail after dxs and the mito

> conference. Dr Livingston keeps trying to convince me that Dr Shoffner

wont

> find a dx and 'i hate to see you put all your eggs in one basket'...I told

> him that i was under the impression that there werent' any other baskets,

he

> agreed. He is Dr Gloom and Doom! Stupid to say something based solely on

> your ignorance of a subject! All of the mito moms have assured me that Dr

S

> wont take a case unless he thinks you have mito, so that encourages me. I

am

> more at peace and just have to shut out Dr L and Dr E--both of who are

> paralyzed by thier lack of knowlege over 's problems. God is on the

> throne and is using and our family to make grown men humble! "

>

****************************************************************************

**

>

> *****************

>

> hope no one minds me sharing that...here are a few tips I have learned...

>

> I take breaks...sometimes they are scheduled times out with a girlfriend

or

> something and sometimes, Fred walks in the door and I just have to get

out!

>

> Communicate with your spouse about how hard it is and what you need for

him

> to help you...

>

> Get a mentor...mine is about 15 years older than me and a powerful woman

of

> faith!

>

> Do something for yourself, some creative is even better!

>

> Read the bible if you are Christian and remind God of his promises to you!

I

> am workin gon this...

>

> I have recently learned to train myself to discard all the extra junk in

my

> head and not to retain new things unless they are important and if they

can

> written down and then discarded later I don't even try to remember it!

>

> One other thing...I love this quote from a good preacher I know... " The

most

> effective preaching you can ever do is to live a life that cannot be

> explained without God " that inspires me b/c I want people to think that

of

> me!

>

> thanks for sticking with this long email!

> deb

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

Hi everyone,

I do not often post, but I read and listen a lot.At the momment

I feel I have no joy in my life as I watch my little boy loose his battle

slowly with this terrible disease. Today had five eeizures between

7am and 9am. We stopped it with PR Valium. Not to mention the ongoing battle

for funding to pay for his TPN which is conected to his Port a cath that

runs overnight, and also the sheer exhaustion of caring for his extremely

high medical needs.

Sometimes I feel I cannot do this anymore, I have always had a

strong faith in a GOD, but at the momment that relationship is tested.

He is at respite tonight, and I have cried since he left, it has

been a rollercoaster of a week. I love him more than life itself, but

sometimes I wonder what am I doing trying to fight a battle I know I am

loosing. Please do not judge me for my thoughts I just needed to get them

off my chest.

Mum to

Multiple Endocrine failure

Complex 4 Deficiency

Diabetes Insipidus

Inflammatory Bowel Disease

Peg fed + TPN fed

Epilepsy

Cognitive I mpairment

ETC ETC.

bUT THE BRAVEST EARTH ANGEL i HAVE

kNOWN.

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Theresa:

Your honesty touched me deeply. I think there are many people that would not

judge you - I certainly do not. Some will unfortunately but those are the

people who have failed to learn true empathy and compassion. It's so easy

to say what we would do in situation x, y or z but until we are in it we

don't really know.

I know many people feel I have given up my life for my sons - they have

decided that there can not be any joy in my life and that enough is enough.

There are others who judge and feel I have not gone far enough - should

list Sam for a multi organ transplant and give him that last chance even

though he would likely never survive it. Only we can know when enough is

enough and what is right and to make it even more bitter we question what we

are doing all the time. Is this appropriate? When do I stop? have I gone far

enough? Is there a treatment I am missing? Is there still quality of life?

This disease can progress a little each day and month and before we know it

we are in situations that 2 years ago we said we would never be able to

imagine. It's beyond heart wrenching to watch our children suffer and hurt

and lose ground. Who can say what the right response to that is? I certainly

can't. I try very hard just to take things hour by hour and find joy in

things like watching my girl's grow into wonderful empathetic people because

of their experiences. Or realizing how many good people there are in our

lives that try to make a difference from friends to pharmacists to doctors

and nurses to the mail man and the people in the coffee shop.

But there are many days I pray for my heart to become numb because I don't

think I can bear it to crack anymore. And though I believe in my head that

God has a plan greater than mine, I wonder all the time if perhaps my plan

wouldn't be better than His. There are many days I wonder " is this all worth

it? " and I am so exhausted I can not feel anything but fatigue and despair.

Fortunately rainbows do follow the rain but they are slow in coming

sometimes aren't they?

Thoreau said: " There is no greater miracle than to look through the eyes of

another for an instant. " That is our task as human beings though we all fall

short of it from time to time . There is nothing that you said that bears

judging. I'm truly sorry for your pain.

Anne

Re: How do you keep the joy in your lives

>

>

> Hi everyone,

> I do not often post, but I read and listen a lot.At the

momment

> I feel I have no joy in my life as I watch my little boy loose his battle

> slowly with this terrible disease. Today had five eeizures between

> 7am and 9am. We stopped it with PR Valium. Not to mention the ongoing

battle

> for funding to pay for his TPN which is conected to his Port a cath that

> runs overnight, and also the sheer exhaustion of caring for his extremely

> high medical needs.

> Sometimes I feel I cannot do this anymore, I have always had a

> strong faith in a GOD, but at the momment that relationship is tested.

> He is at respite tonight, and I have cried since he left, it

has

> been a rollercoaster of a week. I love him more than life itself, but

> sometimes I wonder what am I doing trying to fight a battle I know I am

> loosing. Please do not judge me for my thoughts I just needed to get them

> off my chest.

>

> Mum to

> Multiple Endocrine failure

> Complex 4 Deficiency

> Diabetes Insipidus

> Inflammatory Bowel Disease

> Peg fed + TPN fed

> Epilepsy

> Cognitive I mpairment

> ETC ETC.

> bUT THE BRAVEST EARTH ANGEL i HAVE

> kNOWN.

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

Theresa:

Your honesty touched me deeply. I think there are many people that would not

judge you - I certainly do not. Some will unfortunately but those are the

people who have failed to learn true empathy and compassion. It's so easy

to say what we would do in situation x, y or z but until we are in it we

don't really know.

I know many people feel I have given up my life for my sons - they have

decided that there can not be any joy in my life and that enough is enough.

There are others who judge and feel I have not gone far enough - should

list Sam for a multi organ transplant and give him that last chance even

though he would likely never survive it. Only we can know when enough is

enough and what is right and to make it even more bitter we question what we

are doing all the time. Is this appropriate? When do I stop? have I gone far

enough? Is there a treatment I am missing? Is there still quality of life?

This disease can progress a little each day and month and before we know it

we are in situations that 2 years ago we said we would never be able to

imagine. It's beyond heart wrenching to watch our children suffer and hurt

and lose ground. Who can say what the right response to that is? I certainly

can't. I try very hard just to take things hour by hour and find joy in

things like watching my girl's grow into wonderful empathetic people because

of their experiences. Or realizing how many good people there are in our

lives that try to make a difference from friends to pharmacists to doctors

and nurses to the mail man and the people in the coffee shop.

But there are many days I pray for my heart to become numb because I don't

think I can bear it to crack anymore. And though I believe in my head that

God has a plan greater than mine, I wonder all the time if perhaps my plan

wouldn't be better than His. There are many days I wonder " is this all worth

it? " and I am so exhausted I can not feel anything but fatigue and despair.

Fortunately rainbows do follow the rain but they are slow in coming

sometimes aren't they?

Thoreau said: " There is no greater miracle than to look through the eyes of

another for an instant. " That is our task as human beings though we all fall

short of it from time to time . There is nothing that you said that bears

judging. I'm truly sorry for your pain.

Anne

Re: How do you keep the joy in your lives

>

>

> Hi everyone,

> I do not often post, but I read and listen a lot.At the

momment

> I feel I have no joy in my life as I watch my little boy loose his battle

> slowly with this terrible disease. Today had five eeizures between

> 7am and 9am. We stopped it with PR Valium. Not to mention the ongoing

battle

> for funding to pay for his TPN which is conected to his Port a cath that

> runs overnight, and also the sheer exhaustion of caring for his extremely

> high medical needs.

> Sometimes I feel I cannot do this anymore, I have always had a

> strong faith in a GOD, but at the momment that relationship is tested.

> He is at respite tonight, and I have cried since he left, it

has

> been a rollercoaster of a week. I love him more than life itself, but

> sometimes I wonder what am I doing trying to fight a battle I know I am

> loosing. Please do not judge me for my thoughts I just needed to get them

> off my chest.

>

> Mum to

> Multiple Endocrine failure

> Complex 4 Deficiency

> Diabetes Insipidus

> Inflammatory Bowel Disease

> Peg fed + TPN fed

> Epilepsy

> Cognitive I mpairment

> ETC ETC.

> bUT THE BRAVEST EARTH ANGEL i HAVE

> kNOWN.

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

dear therese, my thoughts are with you and my heart aches for you --is there anything we can do to help you at least get a little rest? do you have nursing care at home?( sometimes this is a pain for us but when i am exhausted i really learn to appreciate it. )

we live in mass.,about 30 miles north of boston-- are you close at all to us?

my daughter is doing fairly well for now but i remember the bad times and the sheer exhaustion and the terrible sadness i felt all the time ( but trying to appear happy for my other two children)

please let any of us help in some way. God bless

mary

Therese Fuhrmann wrote: Hi everyone,I do not often post, but I read and listen a lot.At the momment I feel I have no joy in my life as I watch my little boy loose his battle slowly with this terrible disease. Today had five eeizures between 7am and 9am. We stopped it with PR Valium. Not to mention the ongoing battle for funding to pay for his TPN which is conected to his Port a cath that runs overnight, and also the sheer exhaustion of caring for his extremely high medical needs.Sometimes I feel I cannot do this anymore, I have always had a strong faith in a GOD, but at the momment that relationship is tested.He is at respite tonight, and I have cried since he left, it has been a rollercoaster of a week. I love him more than life itself, but sometimes I wonder what am I doing trying to fight a battle I know I am loosing. Please do not judge me for my thoughts I just needed to get them off my chest.Mum to Multiple Endocrine failureComplex 4 DeficiencyDiabetes InsipidusInflammatory Bowel DiseasePeg fed + TPN fedEpilepsyCognitive I mpairmentETC ETC.bUT THE BRAVEST EARTH ANGEL i HAVEkNOWN._________________________________________________________________MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx

[Guest guest]

dear therese, my thoughts are with you and my heart aches for you --is there anything we can do to help you at least get a little rest? do you have nursing care at home?( sometimes this is a pain for us but when i am exhausted i really learn to appreciate it. )

we live in mass.,about 30 miles north of boston-- are you close at all to us?

my daughter is doing fairly well for now but i remember the bad times and the sheer exhaustion and the terrible sadness i felt all the time ( but trying to appear happy for my other two children)

please let any of us help in some way. God bless

mary

Therese Fuhrmann wrote: Hi everyone,I do not often post, but I read and listen a lot.At the momment I feel I have no joy in my life as I watch my little boy loose his battle slowly with this terrible disease. Today had five eeizures between 7am and 9am. We stopped it with PR Valium. Not to mention the ongoing battle for funding to pay for his TPN which is conected to his Port a cath that runs overnight, and also the sheer exhaustion of caring for his extremely high medical needs.Sometimes I feel I cannot do this anymore, I have always had a strong faith in a GOD, but at the momment that relationship is tested.He is at respite tonight, and I have cried since he left, it has been a rollercoaster of a week. I love him more than life itself, but sometimes I wonder what am I doing trying to fight a battle I know I am loosing. Please do not judge me for my thoughts I just needed to get them off my chest.Mum to Multiple Endocrine failureComplex 4 DeficiencyDiabetes InsipidusInflammatory Bowel DiseasePeg fed + TPN fedEpilepsyCognitive I mpairmentETC ETC.bUT THE BRAVEST EARTH ANGEL i HAVEkNOWN._________________________________________________________________MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx

[Guest guest]

To everyone that has respnded to my email, thankyou for all your kind words,

it does help to know that I am not alone. I live in a small country town in

NSW Australia. I do get every second weekend respite, but the trouble with

that is I am so exhausted by the time it comes around. I am also a single

parent, as s Dad decided he could not cope with this when was

diagnosed.

Thankyou for all all your kind words and prayers, it helps heaps

to be able to say how I feel and that people do understand.

Therese.

s Mum.

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

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[Guest guest]

Therese,

Just out of interest - which town do you live in?

Donna in Adelaide (mum to Lochie 20/7/00-20/7/01)

Re: How do you keep the joy in your lives

>

>

>

> To everyone that has respnded to my email, thankyou for all your kind

words,

> it does help to know that I am not alone. I live in a small country town

in

> NSW Australia. I do get every second weekend respite, but the trouble with

> that is I am so exhausted by the time it comes around. I am also a single

> parent, as s Dad decided he could not cope with this when

was

> diagnosed.

> Thankyou for all all your kind words and prayers, it helps

heaps

> to be able to say how I feel and that people do understand.

>

> Therese.

> s Mum.

>

>

>

> _________________________________________________________________

> Join the world's largest e-mail service with MSN Hotmail.

> http://www.hotmail.com

>

>

>

>

> Please contact mito-owner with any problems or questions.

>

>

[Guest guest]

Anne,

Your reply to Theresa was as though you had reached inside of my soul and put into words the emotions and thoughts that run through me every second of every day. We are all truly kindred spirits and beyond any judgement of each other.

Barb

Mom to , 20, Leigh's Disease, my Stefany angel and e.

[Guest guest]

Anne,

Your reply to Theresa was as though you had reached inside of my soul and put into words the emotions and thoughts that run through me every second of every day. We are all truly kindred spirits and beyond any judgement of each other.

Barb

Mom to , 20, Leigh's Disease, my Stefany angel and e.

[Guest guest]

hi,

my family is large ( 6 kids ) since jessica is not the only child we have, we have had to balance everything well. we have a small cabin in the mountains by a lake. we go there every weekend from fri- sun. its a lot of work taking all the medical stuff and planning for everything, but my other kids really enjoy the change of pace. for myself i take ceramics class once a week for 2 hrs. nothing like adult conversation that doesn't have anything to do with a disability...lol.

michele, mom to jessica, 8 yrs old, mitochondrial diease, metabolic disorder, G-J tube, MR, intractable seizures, keto kid since 3/02, bladder dysfunction, dysautonomia and light of my life.

[Guest guest]

hi,

my family is large ( 6 kids ) since jessica is not the only child we have, we have had to balance everything well. we have a small cabin in the mountains by a lake. we go there every weekend from fri- sun. its a lot of work taking all the medical stuff and planning for everything, but my other kids really enjoy the change of pace. for myself i take ceramics class once a week for 2 hrs. nothing like adult conversation that doesn't have anything to do with a disability...lol.

michele, mom to jessica, 8 yrs old, mitochondrial diease, metabolic disorder, G-J tube, MR, intractable seizures, keto kid since 3/02, bladder dysfunction, dysautonomia and light of my life.

[Guest guest]

Dear Donna,

I live in Lismore in Northrn NSW. is in hospital very ill

again tonight, he was admitted to hospital on Mothers Day with feeding tube

that had retracted. He went to surgery on Sunday night, but it was not

sucessful, so he was transfered by ambulance on Monday to Brisbane for

further surgery. He is back in Lismore in Hospital but today came down with

Gastro, he caught it in Brisbane.Please keep in your thoughts and

prayers.

Therese(Gregors Mum)

_________________________________________________________________

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[Guest guest]

DEAR Therese,I will keep gregory in my prayers,god bless.Tiff,mom of ally and

ariel mitochondrial encephalomyopathy