Re: How do other Dad's cope...

[Guest guest]

Elaine,

what a lovey tribute to your son! Sounds to me like you did everything you possiby could to keep your precious son alive. I remember also trying so hard to keep my son alive figuring I did it by love alone somehow. but he i suppose was not so severly affected by mito and this is just a maybe forever unproven theory. I remember fighting the dr's that told me he could not die from autism! Anybody else would have been put on an IV. My husband is not much help either and has trouble shoeing emotion. I am sorry he left you without support and love to cope on your own. Kathy Foley

[Guest guest]

hi there, with regards your "dads" question, i have to say ( as a mom) there are dads and then there are dads !!!!! my ex. left 6 yrs. ago because, " he couldnt bare to watch daniel go downhill.." .( he was also having an affair). we were married for 20yrs. and he is still in denial about daniels disease, but as daniels symptoms are becoming more obvious, what use to be verbal and emotional abuse toward me has turned to physical and financial abuse, he is curently awaiting trial,for assault, has cut my child support by 50% and says in the new year he is going for full custody of daniel !!! ( which of course he stands no chance of getting, ) if you met him youd say what a good guy, every year he hosts a golf tournament and the proceeds go to make a wish, he has a house on the water, a boat , b.m.w., place in the desert, but his way of dealing with the pain of daniel is to try and make me feel worse................when the dr, recently told daniel that his legs were going to continue getting weaker and weaker, my ex. said " the dr, told me that if you take it easy for a couple of weeks youll be o.k." daniel replied "thats not what the dr. told me".........

that is why it was so nice to recieve jeans " quote" , we have all to find was to get through " today "..gook luck , jillian, daniels mom

How do other Dad's cope...

Hi,

Happy New Year to everyone.....(smile)

I just want to find out how other Dad's cope with their childrens Mito problems. As many of you who have gone to my little son's memorial website http://www.cranalysis.co.lsknow that my son's dad did not cope well, and totally rejected little . I just want to know if his behavior is within the "normal" limits of a male....are there dad's out there who are good fathers help with their care....?

Just curious.....

Bye for nowElaine

[Guest guest]

Hi Elaine,

I am so happy to hear from you!!!! How have you been? I'm sorry I

lost contact, but I didn't have your email address and I didn't realize you

were still on the list! I went to your website. It's a beautiful tribute

to . When I update my website I'd like to put a link to yours if it's

ok.

As for your question about dads...Jack had a lot of issues with the

kids' disease, but he never ignored the boys. He just pretended everything

was fine and we didn't need all those doctors. He takes care of them the

best he can now that he has emphysema. He always did take care of them very

well. He'd feed, change diapers and do all those things. He loves those

kids more than I can say! I have read about and do know people whose

husbands did abandon them and the kids. I'm not sure how normal that is,

but it does happen. I'm sorry it had happened to you, and all the others

out there as well. I can't imagine what it's like to do it alone and under

that kind of a circumstance. If you look on the bright side, so to speak,

had the most important people around him. He didn't need anyone who

couldn't deal with him! It's his father's loss and someday he will realize

that. Maybe not in the near future, but he will.

Well, I have to tend to my kiddos. They have regressed quite a bit

since I last spoke to you. is on a vent full time and can no

longer crawl, sit up or eat by mouth; at least not enough to sustain him.

They both continue to get smart and are doing well considering. Please

write and tell me how you are doing. I have thought about you often over

the past year. Take care and hope to hear from you soon...

Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV-

11 & 10-Both w/Leigh's Disease (?), MR (mild), g-tube,

w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us!

http://u2.lvcm.com/jscb

> Happy New Year to everyone.....(smile)

>

> I just want to find out how other Dad's cope with their childrens Mito

problems. As many of you who have gone to my little son's memorial website

http://www.cranalysis.co.ls

> know that my son's dad did not cope well, and totally rejected little

. I just want to know if his behavior is within the " normal " limits of

a male....are there dad's out there who are good fathers help with their

care....?

[Guest guest]

Elaine asked:

....are there dad's out there who are good fathers help with their care....?

I am happy to report that my husband is a terrific, patient, helpful father. Not to say that we cope the same, but I am so grateful to him and grateful that I don't have to go through this alone. I really feel for those of you on your own with these kiddos.

, mom to Seth and Ben, and grateful wife of Matt

[Guest guest]

Hi ,

It's wonderful to know there are good dad's out there...you're very fortunate. Kiss your 2 little one's for me and may you have a wonderful New Year...

Elaine

wrote:

Elaine asked:

....are there dad's out there who are good fathers help with their care....?

I am happy to report that my husband is a terrific, patient, helpful father. Not to say that we cope the same, but I am so grateful to him and grateful that I don't have to go through this alone. I really feel for those of you on your own with these kiddos.

, mom to Seth and Ben, and grateful wife of Matt Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Kathy,

I'm so sorry you had such a hard time with the Dr's as well.....:-(

Guy's do have this emotion thing....it's just that they're wired up differently to us females...I wish someone would re-wire them...giggleHave a great New Year.....

Elaine

KAFoley2@... wrote: Elaine,what a lovey tribute to your son! Sounds to me like you did everything you possiby could to keep your precious son alive. I remember also trying so hard to keep my son alive figuring I did it by love alone somehow. but he i suppose was not so severly affected by mito and this is just a maybe forever unproven theory. I remember fighting the dr's that told me he could not die from autism! Anybody else would have been put on an IV. My husband is not much help either and has trouble shoeing emotion. I am sorry he left you without support and love to cope on your own. Kathy Foley Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Jillian,

Wow! you seem to have a lot on your plate as well.it's not easy, and with looking after our precious Mito children, it is made easier I think, if you have a dad who cares. My heart goes out to you...email me anytime if you need to vent....I have good strong shoulders and a good ear for listening...(smile) Keep your chin up....there is light at the end of the tunnel....

Have a good New Year and give a big kiss from me......

Elaine

Jillian Webbe wrote:

hi there, with regards your "dads" question, i have to say ( as a mom) there are dads and then there are dads !!!!! my ex. left 6 yrs. ago because, " he couldnt bare to watch daniel go downhill.." .( he was also having an affair). we were married for 20yrs. and he is still in denial about daniels disease, but as daniels symptoms are becoming more obvious, what use to be verbal and emotional abuse toward me has turned to physical and financial abuse, he is curently awaiting trial,for assault, has cut my child support by 50% and says in the new year he is going for full custody of daniel !!! ( which of course he stands no chance of getting, ) if you met him youd say what a good guy, every year he hosts a golf tournament and the proceeds go to make a wish, he has a house on the water, a boat , b.m.w., place in the desert, but his way of dealing with the pain of daniel is to try and make me feel worse................when the dr, recently told daniel that his legs were going to continue getting weaker and weaker, my ex. said " the dr, told me that if you take it easy for a couple of weeks youll be o.k." daniel replied "thats not what the dr. told me".........

that is why it was so nice to recieve jeans " quote" , we have all to find was to get through " today "..gook luck , jillian, daniels mom

How do other Dad's cope...

Hi,

Happy New Year to everyone.....(smile)

I just want to find out how other Dad's cope with their childrens Mito problems. As many of you who have gone to my little son's memorial website http://www.cranalysis.co.lsknow that my son's dad did not cope well, and totally rejected little . I just want to know if his behavior is within the "normal" limits of a male....are there dad's out there who are good fathers help with their care....?

Just curious.....

Bye for nowElaine

[Guest guest]

Hi Sue......(smile) is that really you.......wow!!!!!!!!

am so, so happy you're here, so we can resume the contact that we lost. As you can see I have had the most horrific year....and am still struggling deeply with my son's loss....he was my little shadow, I did'nt do a thing without him....he went on jungle gyms, the beach, shopping, but towards the last year, he did'nt enjoy going out at all, and preferred to stay at home and maybe sit in his pram in the garden....I always noticed butterflies around him...(smile) isn't that beautiful.

I am so sorry to hear and have regressed....my heart goes out to you...I know how hard it is...I wish life was not so hard for our poor little children. I can't tell you how many times I asked God to rather let me take on little 's problems, so my son could live happy....I used to beg and bargain alot with God. I guess we will get our answers one day, I have a list fo questions I am going to ask in heaven....(smile)

Give and a huge kiss and teddy bear hug from me....and tell them it's all the way from South Africa......(smileI have just been to your Webiste and wow! Sue, they are the 2 most handsome, beautiful, happy children...you have a wonderful website.

Hey...dad sounds great...you're lucky. :-)

I am so happy we have found one another in cyberspace again.....(smile)

LoveElaine

Jack and Sue wrote: Hi Elaine, I am so happy to hear from you!!!! How have you been? I'm sorry Ilost contact, but I didn't have your email address and I didn't realize youwere still on the list! I went to your website. It's a beautiful tributeto . When I update my website I'd like to put a link to yours if it'sok. As for your question about dads...Jack had a lot of issues with thekids' disease, but he never ignored the boys. He just pretended everythingwas fine and we didn't need all those doctors. He takes care of them thebest he can now that he has emphysema. He always did take care of them verywell. He'd feed, change diapers and do all those things. He loves thosekids more than I can say! I have read about and do know people whosehusbands did abandon them and the kids. I'm not sure how normal that is,but it does happen. I'm sorry it had happened to you, and all the othersout there as well. I can't imagine what it's like to do it alone and underthat kind of a circumstance. If you look on the bright side, so to speak, had the most important people around him. He didn't need anyone whocouldn't deal with him! It's his father's loss and someday he will realizethat. Maybe not in the near future, but he will. Well, I have to tend to my kiddos. They have regressed quite a bitsince I last spoke to you. is on a vent full time and can nolonger crawl, sit up or eat by mouth; at least not enough to sustain him.They both continue to get smart and are doing well considering. Pleasewrite and tell me how you are doing. I have thought about you often overthe past year. Take care and hope to hear from you soon...Sue & Jack-worn out parents to the greatest kids on earth in Las Vegas, NV-11 & 10-Both w/Leigh's Disease (?), MR (mild), g-tube, w/fundo, larynotracheomalacia, trach, vent 24/7. Visit us!http://u2.lvcm.com/jscb> Happy New Year to everyone.....(smile)>> I just want to find out how other Dad's cope with their childrens Mitoproblems. As many of you who have gone to my little son's memorial websitehttp://www.cranalysis.co.ls> know that my son's dad did not cope well, and totally rejected little. I just want to know if his behavior is within the "normal" limits ofa male....are there dad's out there who are good fathers help with theircare....?Please contact mito-owner with any problems or questions.

[Guest guest]

Hi Elaine:

There are many types of people out there who can cope with special needs

children and others who need to run away from it.

My husband is one who is there for us. But as I've said, our daughter

doesn't have many medical issues. No medicines, only vitamin supplements.

She needs equipment to get around, but loves to roll around on the floor.

My husband doesn't talk much about how he feels, I'm lucky that I have

this great support group and may be woman tend to be able to talk more

freely than guys do. Yes, Jeff, I know you are there to contribute.

May be you can get other guys to contribute to this board.

Anyway, my husband is always there for the kids. We have three.

He is there to change Leah's diapers, feed her, clothe her, take her to

toys r us, and when she needs to go to the hospital because of illness,

he is usually the one that stays in the hospital with her. He takes

sick leave from work to do that. But there are times he gets frustrated

with her illness. Especially if our plans have to change a little

bit to accomodate her. He goes, "I know, I know, it's life with Leah."

He was able to vent with another dad ( a friend of his who has two boys

with autism) about dealing with special needs and government stuff.

So I was glad for that because he never really talks about his feelings.

So each dad is different and unique with not only this disease but

I think any special needs child. It may be because they aren't in

"control" of the situation. I don't know. What do other dads

out there say and feel? We always hear from the moms, but what about

the dads? Is there more pressure because of being the breadwinner

and insurance coverage person? Guess I need to ask my husband a few

questions. It is sorry to hear when any parent can't handle

their situation on this. It just makes it a little more difficult

for the main caregiver. My heart does go out a little bit knowing

how draining it can be to be a single parent. The decisions and such.

So, my husband is a great supporter. It will be interesting to hear

other stories out there. Especially from the dads. May be I

can get my husband to respond to this one, too.

mom to Leah

Elaine O wrote:

Hi,

Happy New Year to everyone.....(smile)

I just want to find out how other Dad's cope with their childrens Mito

problems. As many of you who have gone to my little son's memorial website

http://www.cranalysis.co.ls

know that my son's dad did not cope well, and totally rejected little

. I just want to know if his behavior is within the "normal" limits

of a male....are there dad's out there who are good fathers help

with their care....?

Just curious.....

Bye for now

Elaine

[Guest guest]

My husband is coping pretty well. He finds it very difficult to

converse w/ about but wants the upmost for our son. He is doing very

well zach is and the therapies are helping os it makes it easier on

us. I know my husband would not reject zach but my mother inlaw did

for a while. She wouldnt even hardly glance at him or pick him up

never once offers to take him up to her house just my 3yr old girl.

He does everything a baby his age would yet only slightly behind and

he doesnt speak very well. He has some physical limitations and

verbal but hes progressing which makes it easier on dad, but i do

know that each time we have gotten results back hubby has had

hypertension and he has hypertension so his bp goes up i guess thats

why he doesnt talk about it. He tells me not to worry because a

diagnosis isnt gonna change who he is to us. It will just let us be

better informed.

Mom to zach 17 months, glutaric aciduria type 2

is 3

>

> Hi,

>

> Happy New Year to everyone.....(smile)

>

> I just want to find out how other Dad's cope with their childrens

Mito problems. As many of you who have gone to my little son's

memorial website http://www.cranalysis.co.ls

> know that my son's dad did not cope well, and totally rejected

little . I just want to know if his behavior is within

the " normal " limits of a male....are there dad's out there who are

good fathers help with their care....?

>

> Just curious.....

>

> Bye for now

> Elaine

>

>

>

> ---------------------------------

>

[Guest guest]

I know, you all were waiting for me to weigh in with a huge

defense for all the dads out there. Not gonna happen. My wife handles

99.9% of Maggie's care. I've never met our pediatrician. My wife's

friends can't relate to a stay-at-home mom. My wife juggles

appointments w/ Primary care Dr.s, Gastroenterologists, Neurologists,

two health care supply companies, Insurance, Social Security,

Supplemental Insurance, Home health aides, Feeding Specialists,

Occupational Therapists & Visiting Nurses. All I do is go to work. I

watch both girls while my wife goes to work part time on the weekends

tending bar, under the-table, so as not to affect Maggie's

suplemental Social Security payments. Oh, did I mention my five year

old almost certainly suffers from ADD? We didn't want to put her on

medication, so my wife deals with it.

Dads stink.

Right now my wife is drawing Maggie's meds into syringes to get

her through Sunday. This will save her time during the day, Maggie

just went down, it's 7pm. Maggie will wake up again in an hour for

her phenobarbitol. By the will be down for the night.

Dads stink.

[Guest guest]

Elaine,

I'm happy to report that my husband is extremely involved with Becca. In fact, he is a stay-at-home dad, and I work outside the home. Though up until he began staying home full-time (2 years ago) he wasn't all that helpful, but has always been involved and we have always done the doctor and the hospital trips together. Sometimes now I get jealous because he and Becca are so close, a bond that I am missing out on since he is the main caretaker. When she is hurting, she wants her daddy, in the middle of the night, she wants her daddy Oh well, though I'm not as close with her as my husband, we are very close. I have one of those husbands who talks about his feelings and is very loving and affectionate...sometimes I think we're carrying this role reversal a little too far! LOL. At any rate, I feel blessed that I'm not in this alone, physically or emotionally.

Rhonda-Mom to Becca the Brave

How do other Dad's cope...

Hi,

Happy New Year to everyone.....(smile)

I just want to find out how other Dad's cope with their childrens Mito problems. As many of you who have gone to my little son's memorial website http://www.cranalysis.co.lsknow that my son's dad did not cope well, and totally rejected little . I just want to know if his behavior is within the "normal" limits of a male....are there dad's out there who are good fathers help with their care....?

Just curious.....

Bye for nowElaine

[Guest guest]

Hey Jeff:

I'm sorry, but you do more than 1% watch the girls when your wife goes to

work. So give yourself a little more credit for what you do. But may be by

reading what you wrote you may want to contribute a teeny bit more. May be

meet the ped. and see what they do. Unless it is too much to take off work.

But you are involved in more ways than you realize. Just being there for

your wife and kids is a big plus and more than a few others would do. And by

posting on here to get information and offer support to us is more than some

dads and inlaws do. So give yourself a little pat on the back for helping

where you can help and where you want to help right now. May be you will

take the babysteps to learn how to do things. Because what if something

would happen to your wife. I keep asking if he knows where I keep

things and if could handle stuff if something would happen to me. Even if

Leah was healthy, I guess I would need to ask that question of him. Would he

know what to do to get the boys to school, paperwork, etc. I handle most of

the bill paying and such. But is wonderful at writing letters for

insurance. But you know what, we all stink at doing things one way or

another. But may be with this situation, dads just have a little tougher

time adjusting to things. But as I've said, you do a little bit more than

1%. You try and that is the most important thing for all of us to keep in

mind. We try to help our kids through this and us.

mom to Leah

jgoss01001 wrote:

> I know, you all were waiting for me to weigh in with a huge

> defense for all the dads out there. Not gonna happen. My wife handles

> 99.9% of Maggie's care. I've never met our pediatrician. My wife's

> friends can't relate to a stay-at-home mom. My wife juggles

> appointments w/ Primary care Dr.s, Gastroenterologists, Neurologists,

> two health care supply companies, Insurance, Social Security,

> Supplemental Insurance, Home health aides, Feeding Specialists,

> Occupational Therapists & Visiting Nurses. All I do is go to work. I

> watch both girls while my wife goes to work part time on the weekends

> tending bar, under the-table, so as not to affect Maggie's

> suplemental Social Security payments. Oh, did I mention my five year

> old almost certainly suffers from ADD? We didn't want to put her on

> medication, so my wife deals with it.

> Dads stink.

> Right now my wife is drawing Maggie's meds into syringes to get

> her through Sunday. This will save her time during the day, Maggie

> just went down, it's 7pm. Maggie will wake up again in an hour for

> her phenobarbitol. By the will be down for the night.

> Dads stink.

>

>

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

>

>

[Guest guest]

Jeff. I think belonging to this group, reading up on Mito, checking out her doctors (you were asking about Korson) is huge. Don't underestimate the importance of that.

I have a husband who adores our children. Is great about helping out with them. But when it comes to illness especially Mito (one son effected) he is like a deer in the headlights and it is "my job." He comes to some of the "important" appointments. But only gets some of it. He shuts down because he can't handle what he hears sometimes. He is a wonderful Dad and husband.... I wouldn't trade him for the world..... However, I wish I had a Mito "partner" in my house. I feel like I always have to be at the "top" of my game so to speak. Up on the latest, trying to keep a step ahead... It is tiring.

Being interested, really interested,,,, is such an indescribable help.

Re: How do other Dad's cope...

I know, you all were waiting for me to weigh in with a huge defense for all the dads out there. Not gonna happen. My wife handles 99.9% of Maggie's care. I've never met our pediatrician. My wife's friends can't relate to a stay-at-home mom. My wife juggles appointments w/ Primary care Dr.s, Gastroenterologists, Neurologists, two health care supply companies, Insurance, Social Security, Supplemental Insurance, Home health aides, Feeding Specialists, Occupational Therapists & Visiting Nurses. All I do is go to work. I watch both girls while my wife goes to work part time on the weekends tending bar, under the-table, so as not to affect Maggie's suplemental Social Security payments. Oh, did I mention my five year old almost certainly suffers from ADD? We didn't want to put her on medication, so my wife deals with it. Dads stink. Right now my wife is drawing Maggie's meds into syringes to get her through Sunday. This will save her time during the day, Maggie just went down, it's 7pm. Maggie will wake up again in an hour for her phenobarbitol. By the will be down for the night. Dads stink.Please contact mito-owner with any problems or questions.

[Guest guest]

Just a few quick observations regards the dad's issue:

Many of the names that sign off to messages on this group are mums only. I assume that some of these would be single mums (who need a huge cyber hug and a bravery award - single parenthood is an awesome job, made even more awesome by caring for special needs kids) and other mums sign off themselves, as they do all the corresponding.

I () actually do most of the corresponding, but choose to sign off for both of us ( & ), as this is a joint undertaking - we need each other to maintain 's care an keep this little family functioning.

I sometimes receive replies addressed to only, as people often assume that it is the mums that do the corresponding - (not that this worries me).

I actually carry most of the load for 's day to day care, as has had many health struggles of her own in recent times, including shoulder & back related lifting problems.

There was a time when carried most of the burden for his care, while I was laid up in bed, often in pain for 2 years, with chronic fatigue syndrome (C.F.S./M.E.).

I guess one of the most difficult things for both of us to handle with this situation has been the isolation, because it was difficult to find others struggling with mito, who understood the issues you were struggling with, or because many of the friends we thought we had vanished, we assume because they felt overwhelmed by our circumstances, and found it easier to stay away. For those two reasons (among others), this newsgroup has been very rewarding and helpful.

Regards,

& Savage

How do other Dad's cope...

Hi,

Happy New Year to everyone.....(smile)

I just want to find out how other Dad's cope with their childrens Mito problems. As many of you who have gone to my little son's memorial website http://www.cranalysis.co.lsknow that my son's dad did not cope well, and totally rejected little . I just want to know if his behavior is within the "normal" limits of a male....are there dad's out there who are good fathers help with their care....?

Just curious.....

Bye for nowElaine

[Guest guest]

Dear ,

You have always had encouraging words for me and although my husband is 100 per cent supportive - he doesn't have the same opportunity to get onto the internet and meet all the special people that I have. He did however take his fair share of Lochie. I'd love to share a few things if I may. As Lochie was pump fed at night Steve would have my breast pump and cup of tea ready at seven every morning then give Lochie his morning drugs. I took care of the day care and at night he would mix his milk with all the other necessities and give him his evening drugs as I would usually be exhausted. After Lochie died he felt very lonely in the evenings as he did so much for our little boy. We loved him and cared for him as one and I am very proud of him (and all the other dad's out there!).

Donna (Lochie's mum 7/20/00 - 7/20/01)

How do other Dad's cope...

Hi,

Happy New Year to everyone.....(smile)

I just want to find out how other Dad's cope with their childrens Mito problems. As many of you who have gone to my little son's memorial website http://www.cranalysis.co.lsknow that my son's dad did not cope well, and totally rejected little . I just want to know if his behavior is within the "normal" limits of a male....are there dad's out there who are good fathers help with their care....?

Just curious.....

Bye for nowElaine