Re: Sick of it all!

[Guest guest]

you have no reason to apologize at all...I am going to write you back when I am feeling better...am a little under the weather...but I wanted you to know I am thiking of you

deb

[Guest guest]

Deb, i hope you feel better soon

[Guest guest]

,

I live 65 miles north of Mobile, Alabama

I have family in Atlanta.

If you want to email me privatly and your specific town ect.

I will look into getting you some help.

I know you dont know me but I am here to help if I can.

So many people have been so kind and helped us since our has been sick, I try to hep whoever, whenever I can.

Horsley

, Alabama

leehorsley@...

Sick of it all!

Guys,

My apologies to start for the garbage of filth I'm about to vent.

I'm the single mom of two girls with mito. I'm tired. I'm broke. I'm scared.

God's entrusted these two delicate angels to my care. Huh!!

I can't heal them. They don't understand when I comfort them.

And I can't financially support them because I'm too busy taking care of them. When I get in trouble and must find some work to keep us afloat, they get neglected - I'm only able to give them the bare essentials - not real parenting. Between all the doc's appointments and monthly hospital stayovers, I'm not reliable help for a job.

I'm baffled as to how God thinks I'm supposed to be successful at this, because the aforementioned struggles are just the physical facts.

What about the heart of this? I have buried my children, especially the youngest, so many times . . . ! Every regression steals the child I knew and replaces it with a child more withdrawn and more ill.

I grieve. I ache. Each day seemingly throws another ball into the air to juggle. Each new success is wiped out by 50 steps backward. My life is like a perpetual battle in quicksand comprised mostly of grief.

And in this broken heart and frame of mind I'm supposed to fight the school system, make it to at least one doc appointment per week, the hospital, work, clean the house, mow the lawn, pay the bills, change diapers and clothes and fully shower/groom two girls every day.

I'm sick of it. I feel no sense of reward of a job well done. Yes, when I arrive at the pearly gates I guess I'm supposed to get a pat on the back. But it will feel undeserved. Some days I don't hardly have time to speak to the girls, save to fuss at them for destroying something in the house while I wasn't looking or for incessantly tearing up diapers through clothing and pottying all over the house. Job well done?

My house is a mess. My bills are late. My children need more hugs, more love, more time from me. I forgot to brush my teeth last night and chose not to wash my face, because I only had time to sleep 2-1/2 hours the night before between each job. (Dad has them for the weekend.)

Where in my maternal prenuptual contract did I sign up for this? Clearly I did - all mothers do. But I sure wish someone had explained it more fully. Most parents see their children through success after success until they move on and have their own lives, their own children to raise. We mito parents in particular carry our children to their deaths, to a place where they finally are safe and at peace. Job well done? Sense of accomplishment?

Can I resign my post?

Yes, I'm having a world-class pity party. But like I said: I'm tired. I'm broke. I'm scared.

Thanks, everyone, for listening.

---

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[Guest guest]

,

I totally understand what you are going though. I go through much of the

same and it isn't easy. I pray you are able to find some support in your

area and get the much needed rest.

Holly

[Guest guest]

Yes, unfortunately this is common. I'm trying to get ready to go to Mayo,

worried about finances, but don't feel comfortable fundraising or seeking

organization help because of the hell we've been through here for the past

one year plus. Not to mention 3 children by myself, traveling, going through

appointments, etc. I'm very thankful to have the evaluations, but it's still

overwhelming...how to afford it all and how to deal with it all without any

community support and without any family within 2,000 miles from here.

There are fundraising boxes all over the island for a little girl who is 3

who is in Seattle getting medical treatment for a serious illness. I really

feel for the child and for the family. But, this family is asking for total

financial support (it is a married couple) so that they can stay with their

child for the 6 months or more of treatment. This is in spite of them

currently living at the Mc House in the city. Yet, even with my

3 children, and me being on disability, I don't feel comfortable asking for a

dime. And, if even if someone offered it, I couldn't feel comfortable taking

it, since this same msbp doc accused me of being on this internet listserv

for " attention " and " secondary gain. " It's frustrating, it's exhausting,

it's overwhelming. But, I try to take each day as a new one, try to look at

the small joys in life..of my children's laughs in between the tears, our

beautiful nature here, etc....... But, it's still not right that

...or any of us...are even in a position to go at this alone.....

Dena

[Guest guest]

-

What's truly unfortunate is that lifegets "better" (used loosely) for us and our children once they've passed. The nightmare we live watching them die so slowly in front of us is passed, and the quality of life that tortures them has finally released them to the other side.

The price of living for families enduring mito is very high.

I cannot thank each of you enough for your words of encouragement and validation and comradery through knowledge and experience. I can never express fully enough through words my appreciation for lending an ear in a safe place to voice my pain.

Some days are better than others; the last month has been bad.

Thank you so much!

-

Re: Sick of it all!

, i too am in your pity party i know how you feel we all do, enfortunatly i would love to say it gets better but yeah right. i too barely work, try to find a job that will take me i live in the hospital not my own home. You are not alone. Do you get respite? what state do you live in? i hope you get some rest

Please contact mito-owner with any problems or questions.

[Guest guest]

,

No apologies are needed for the way you feel.This is all so overwhelming to all of us.

God entrusted your 2 delicate angels to your care because HE KNEW you would do a wonderful job.No matter how hard or how heart breaking,and it is both.

Do you have family near,grandparent,aunts,uncles anybody? Contact a church group,you may not be able to leave the kids,but it is surprising how much just having another adult around helps.How about SSI,maybe this could help with finances and on the waiver program you might be able to get some home health services.I know all this takes time to find,and you feel your taking time from the kids,but in the long run it might help you all.

I will pray for GOD'S blessing for all of you.

, Mom to

Sick of it all!

Guys,

My apologies to start for the garbage of filth I'm about to vent.

I'm the single mom of two girls with mito. I'm tired. I'm broke. I'm scared.

God's entrusted these two delicate angels to my care. Huh!!

I can't heal them. They don't understand when I comfort them.

And I can't financially support them because I'm too busy taking care of them. When I get in trouble and must find some work to keep us afloat, they get neglected - I'm only able to give them the bare essentials - not real parenting. Between all the doc's appointments and monthly hospital stayovers, I'm not reliable help for a job.

I'm baffled as to how God thinks I'm supposed to be successful at this, because the aforementioned struggles are just the physical facts.

What about the heart of this? I have buried my children, especially the youngest, so many times . . . ! Every regression steals the child I knew and replaces it with a child more withdrawn and more ill.

I grieve. I ache. Each day seemingly throws another ball into the air to juggle. Each new success is wiped out by 50 steps backward. My life is like a perpetual battle in quicksand comprised mostly of grief.

And in this broken heart and frame of mind I'm supposed to fight the school system, make it to at least one doc appointment per week, the hospital, work, clean the house, mow the lawn, pay the bills, change diapers and clothes and fully shower/groom two girls every day.

I'm sick of it. I feel no sense of reward of a job well done. Yes, when I arrive at the pearly gates I guess I'm supposed to get a pat on the back. But it will feel undeserved. Some days I don't hardly have time to speak to the girls, save to fuss at them for destroying something in the house while I wasn't looking or for incessantly tearing up diapers through clothing and pottying all over the house. Job well done?

My house is a mess. My bills are late. My children need more hugs, more love, more time from me. I forgot to brush my teeth last night and chose not to wash my face, because I only had time to sleep 2-1/2 hours the night before between each job. (Dad has them for the weekend.)

Where in my maternal prenuptual contract did I sign up for this? Clearly I did - all mothers do. But I sure wish someone had explained it more fully. Most parents see their children through success after success until they move on and have their own lives, their own children to raise. We mito parents in particular carry our children to their deaths, to a place where they finally are safe and at peace. Job well done? Sense of accomplishment?

Can I resign my post?

Yes, I'm having a world-class pity party. But like I said: I'm tired. I'm broke. I'm scared.

Thanks, everyone, for listening.

---

Checked by AVG anti-virus system (http://www.grisoft.com).Version: 6.0.391 / Virus Database: 222 - Release Date: 9/20/02Please contact mito-owner with any problems or questions.

[Guest guest]

Hi ,

Don't think I have any more advice than has already been offered, but I'm sending you hugs and very warm wishes. Hope it feels better soon.

Maggie

[Guest guest]

Good Morning ,

Vent away! I wasn't going to respond because I felt that I am not in the right frame of mind to give you words of encouragement. Sadly, it seems sometimes the encouragement from this group is knowing how you feel.

We are moms but we are still human. I pray that all of us will receive strength from God to continue carrying for our angels.

I saw where you where from Georgia. The following is a good website called Parent to Parent of Georgia:

http://www.parenttoparentofga.org/

I found it to be a good website. Wished our state had something like this.

Hope you got some rest this weekend while your husband had the girls.

{{{{{{{{{{{{{{{ H U G S }}}}}}}}}}}}}}}}}}

Darlene

[Guest guest]

,

I feel so bad for you. I myself am having a very bad day. My husband has been traveling for five

weeks, leaving me to tend to all four kids. Cam my “mito boy”

had a very bad vomiting, weight loss, sick time and my oldest daughter is going

to push me over the edge soon. I know it is hard. My husband just went back to work after

one year of being unemployed. Keep

your chin up. I will be thinking of

you.

You are doing an awesome job of holding it

together. I hope you can kind some

support.

Riley

Re: Sick of

it all!

Please hang in there. Your girls need you to

be strong. Try and call a

friend. Don't be so hard on yourself, some

days all we get done is just

meeting the immediate needs. Somedays there

is no time to really spend with

your child. I'm going to pray for your

strength and sanity. I wished I

lived in Atlanta and could help you. Please

don't give up. I think it

sounds like your girls are lucky to have you.

Janelle McGuire

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