Re: Guilty for my ENVY!! Anyone else experience this??

[Guest guest]

,

 

You have every right to your feelings.  It is hard to watch someone else get

what you want.  It is human nature to feel jealous.  Especially when it comes to

your child.  It is one thing for us not to get something we want or need.  We

can learn to do without it.  But you want the best for your children and when

you can't give them something they deserve or need, it makes it even more

heartbreaking.  Your son is lucky to have such a hard-working and devoted

mom. The sacrifices you are making for him won't go unnoticed.  He will grow up

knowing you did all you could to make his life better.  And he loves you for

it.  Own your feelings of jealousy, and then try to let them go.  Tomorrow will

be a better day.

 

Kate  

 

Subject: Guilty for my ENVY!! Anyone else experience this??

To: polymicrogyria

Date: Saturday, July 12, 2008, 5:09 PM

OK. Here it is, my confession of guilt for my envy. As I have

written...our son has bilateral diffuse PMG due to CMV

infection. He is non verbal, seizures, wheelchair, feeding fed etc.

We have a home that is by NO standards appropriate for a growing

disabled boy...but in this economy surviving is a struggle in itself.

I have met many many families in the disabled community lately, and

just recently... if anyone out there gets a magazine

called " Exceptional Parent " it features a family we know in CT who

built a fabulous new home for their disabled son. I heard through

the grapevine... " big settlement for CP due to birth trauma "

This is the 4th family I know that have a birth trauma baby, and are

now living in a wealthy and comfortable lifestyle. Huge homes, all

medical bills paid, elevators, pools, and one even has a mercedes

benz for Mom...because she " deserves it " .... and if you read the

article...and you live in tight quarters with a child who you only

WISH you had a pool to get him into... that envy creeps in.

Now...don't get me wrong...this is a lovely family...but I am so

jealous when I see people like this..because so far...all of them

have changed...and none of them keep in touch with any of

us " strugglers " any more.

Someone out there...just tell me...that my broken heart for how hard

it is for our family...and how much pain my back endures lifting

him...and how I have to work a part time job in the middle of the

night from home..just to keep the bills paid... is an ok feeling.

I keep looking at that article...it doesnt mention a lawsuit...but

the family was a struggling family before. Now they have everything

they need...and they glorified it in a magazine that many people

read...who can never afford to build a perfect home.... because we

do not have anyone to SUE. has PMG, and always

will...because I got sick...with a virus. His birth was normal.

Anyways...I have been praying this afternoon... to not feel

jealous..and it just isnt working. If you see the article...its the

July front cover...you' ll see why.

Has anyone else out there encountered this?

Much love to all my fellow " stugglers " ,, Mom to , age

10, bilateral PMG

[Guest guest]

We have a similar situation also. There is another mom in a Mom's group that I

attend whose child condition, cerebral palsy, seizures, blindness, etc. was

caused by an overdose of a medication given for a blood disorder, and this

caused him to have a masssive brain hemmorage. Horrible thing to happen to

anyone. I think after three years of fighting they got a $4million dollar

settlement, they bought an adapted van, and used the money to pay for all of the

things in their new home for their son- lift system, etc. 

 

Now, we all feel that this family is deserving and that a monetary settlement is

no way compensation for what happened to their son, and they should have money

for medical bills etc.

 

But yes the envy does come in where I wish that I had some way to finance all

the things that Evan needs. I had to quit my job, we are definitley struggling

for sure.

Evan was born with a brain malformation there is no one to blame for his

condition, and we will never get any settlement for that. We are totally fine

with that.

 

I can totally understand the envy, our person that we know of moved away so we

do not see her too often but I do not think they are letting the money go to

their heads.

Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old, 7yrs nda and SM

to 16yrs

www.justinichfamily.blogspot.com

Subject: Guilty for my ENVY!! Anyone else experience this??

To: polymicrogyria

Date: Saturday, July 12, 2008, 2:09 PM

OK. Here it is, my confession of guilt for my envy. As I have

written...our son has bilateral diffuse PMG due to CMV

infection. He is non verbal, seizures, wheelchair, feeding fed etc.

We have a home that is by NO standards appropriate for a growing

disabled boy...but in this economy surviving is a struggle in itself.

I have met many many families in the disabled community lately, and

just recently... if anyone out there gets a magazine

called " Exceptional Parent " it features a family we know in CT who

built a fabulous new home for their disabled son. I heard through

the grapevine... " big settlement for CP due to birth trauma "

This is the 4th family I know that have a birth trauma baby, and are

now living in a wealthy and comfortable lifestyle. Huge homes, all

medical bills paid, elevators, pools, and one even has a mercedes

benz for Mom...because she " deserves it " .... and if you read the

article...and you live in tight quarters with a child who you only

WISH you had a pool to get him into... that envy creeps in.

Now...don't get me wrong...this is a lovely family...but I am so

jealous when I see people like this..because so far...all of them

have changed...and none of them keep in touch with any of

us " strugglers " any more.

Someone out there...just tell me...that my broken heart for how hard

it is for our family...and how much pain my back endures lifting

him...and how I have to work a part time job in the middle of the

night from home..just to keep the bills paid... is an ok feeling.

I keep looking at that article...it doesnt mention a lawsuit...but

the family was a struggling family before. Now they have everything

they need...and they glorified it in a magazine that many people

read...who can never afford to build a perfect home.... because we

do not have anyone to SUE. has PMG, and always

will...because I got sick...with a virus. His birth was normal.

Anyways...I have been praying this afternoon... to not feel

jealous..and it just isnt working. If you see the article...its the

July front cover...you' ll see why.

Has anyone else out there encountered this?

Much love to all my fellow " stugglers " ,, Mom to , age

10, bilateral PMG

[Guest guest]

Thank you Kate... that was very heartwarming. and very true. I did go and

visit one other Mom I know who settle a 20 million lawsuit 3 years ago. Her son

is now 13...but doing very well. She has two adapted vans, a nanny, a nurse, an

indoor therapy swimming pool, a special therapy room...the best of everything...

including two sports cars for herself.

This little boy still goes to school with my ...and that particular Mom

is not quite as nice as she used to be. She seems bitter, and spoiled..and

angry....nothing is ever good enough.

Another friend of mine and her husband stopped calling us when they moved into

a better part of time, and also custom built...what I call a mansion... just a

massive home, elevator, pool, ceiling lifts, therapy rooms... you name it. And

they sent their other child to a private school... we used to be friends...

both of us working Mom's with kids in day care. But she dropped me like a

rock... as soon as they moved into the world of big money.

By tomorrow I'll be better...I did not save that issue of the magazine...just

tossed it.

Tomorrow is another day. And we have to be grateful for what we have, and the

love that we have.

Thanks again Kate. I think most of us here would want the best for our

kids...and yes... a neuronal migration disorder...is no one's " fault " . It just

is the way it is.

Keep the strength. Mom to , age 10...bilateral diffuse PMG...

sweetest little flirt on the planet!!

katherine ramsdell wrote:

,

You have every right to your feelings. It is hard to watch someone else get

what you want. It is human nature to feel jealous. Especially when it comes to

your child. It is one thing for us not to get something we want or need. We

can learn to do without it. But you want the best for your children and when

you can't give them something they deserve or need, it makes it even more

heartbreaking. Your son is lucky to have such a hard-working and devoted mom.

The sacrifices you are making for him won't go unnoticed. He will grow up

knowing you did all you could to make his life better. And he loves you for it.

Own your feelings of jealousy, and then try to let them go. Tomorrow will be a

better day.

Kate

Subject: Guilty for my ENVY!! Anyone else experience this??

To: polymicrogyria

Date: Saturday, July 12, 2008, 5:09 PM

OK. Here it is, my confession of guilt for my envy. As I have

written...our son has bilateral diffuse PMG due to CMV

infection. He is non verbal, seizures, wheelchair, feeding fed etc.

We have a home that is by NO standards appropriate for a growing

disabled boy...but in this economy surviving is a struggle in itself.

I have met many many families in the disabled community lately, and

just recently... if anyone out there gets a magazine

called " Exceptional Parent " it features a family we know in CT who

built a fabulous new home for their disabled son. I heard through

the grapevine... " big settlement for CP due to birth trauma "

This is the 4th family I know that have a birth trauma baby, and are

now living in a wealthy and comfortable lifestyle. Huge homes, all

medical bills paid, elevators, pools, and one even has a mercedes

benz for Mom...because she " deserves it " .... and if you read the

article...and you live in tight quarters with a child who you only

WISH you had a pool to get him into... that envy creeps in.

Now...don't get me wrong...this is a lovely family...but I am so

jealous when I see people like this..because so far...all of them

have changed...and none of them keep in touch with any of

us " strugglers " any more.

Someone out there...just tell me...that my broken heart for how hard

it is for our family...and how much pain my back endures lifting

him...and how I have to work a part time job in the middle of the

night from home..just to keep the bills paid... is an ok feeling.

I keep looking at that article...it doesnt mention a lawsuit...but

the family was a struggling family before. Now they have everything

they need...and they glorified it in a magazine that many people

read...who can never afford to build a perfect home.... because we

do not have anyone to SUE. has PMG, and always

will...because I got sick...with a virus. His birth was normal.

Anyways...I have been praying this afternoon... to not feel

jealous..and it just isnt working. If you see the article...its the

July front cover...you' ll see why.

Has anyone else out there encountered this?

Much love to all my fellow " stugglers " ,, Mom to , age

10, bilateral PMG

[Guest guest]

Big Hugs to you ! You do such an amazing job as 's mom and

are an inspiration to so many who read your posts. It seems that Kate

had just the right words, and that you already know that tomorrow is a

new day.

I pray you wake refreshed tomorrow knowing that your road may not be

easy right now, but you are making a difference and will reap the

rewards of your hard work and sacrifice....it is not going unnoticed.

Blessings to you and and the rest of your family!

Krista

[Guest guest]

Hi .

I think it is completely normal to feel the way you do. goes to

school with kids of all economic backgrounds. Some of the families we

know have tons of money, massive houses, all the equipment you could

ask for and then some... and some of them live in apartments, ride the

bus, etc etc... then there's us somewhere in the middle.

Some got their money from settlements related to their child's

disability, some worked really hard for it, and some were just lucky.

I have a sister who has 2 " typical " kids who just married really well.

For whatever reason this is not our path at this time, we have to work

hard for what we get, maybe it makes us appreciate it more, who knows.

I do know that I would certainly appreciate NOT having to work for

everything... LoL.

's PMG is caused by CMV, so we too have no one to blame or sue.

Yet, I do have someone to blame...myself... and my employer. You see I

am a nurse and it's highly likely that I was exposed to CMV at work.

So I brought this into our home and my employer's shoddy infection

control practices helped things along as well. I'll never be able to

prove it and unfortunately I still have to work at the same place

because I have wonderful health benefits and need them to make sure

gets what be needs.

Sometimes I throw myself a pity party, but inevitably, as soon as I

do, I meet someone who is way worse off than me and I feel foolish for

feeling sorry for myself. Maybe that's God's way of keeping me in check.

Anyway, I just wanted to let you know that you are not alone, we all

feel a pang of envy once in a while. For me, more than the money

thing, I am sometimes envious of the mom's on this list whose children

are far more advanced that , but then I think " Well this is the

hand I was dealt, I guess I have to play it out and see what happens. "

Hope you're feeling better about things today!

Take care.

Sue

Mom to Meghan(12)and (almost 7) BFPP, mod spastic quad cp

-- In polymicrogyria , " jhasselberger@... "

wrote:

>

> OK. Here it is, my confession of guilt for my envy. As I have

> written...our son has bilateral diffuse PMG due to CMV

> infection. He is non verbal, seizures, wheelchair, feeding fed etc.

>

> We have a home that is by NO standards appropriate for a growing

> disabled boy...but in this economy surviving is a struggle in itself.

>

> I have met many many families in the disabled community lately, and

> just recently... if anyone out there gets a magazine

> called " Exceptional Parent " it features a family we know in CT who

> built a fabulous new home for their disabled son. I heard through

> the grapevine... " big settlement for CP due to birth trauma "

>

> This is the 4th family I know that have a birth trauma baby, and are

> now living in a wealthy and comfortable lifestyle. Huge homes, all

> medical bills paid, elevators, pools, and one even has a mercedes

> benz for Mom...because she " deserves it " .... and if you read the

> article...and you live in tight quarters with a child who you only

> WISH you had a pool to get him into... that envy creeps in.

>

> Now...don't get me wrong...this is a lovely family...but I am so

> jealous when I see people like this..because so far...all of them

> have changed...and none of them keep in touch with any of

> us " strugglers " any more.

>

> Someone out there...just tell me...that my broken heart for how hard

> it is for our family...and how much pain my back endures lifting

> him...and how I have to work a part time job in the middle of the

> night from home..just to keep the bills paid... is an ok feeling.

>

> I keep looking at that article...it doesnt mention a lawsuit...but

> the family was a struggling family before. Now they have everything

> they need...and they glorified it in a magazine that many people

> read...who can never afford to build a perfect home.... because we

> do not have anyone to SUE. has PMG, and always

> will...because I got sick...with a virus. His birth was normal.

>

> Anyways...I have been praying this afternoon...to not feel

> jealous..and it just isnt working. If you see the article...its the

> July front cover...you'll see why.

>

> Has anyone else out there encountered this?

>

> Much love to all my fellow " stugglers " ,, Mom to , age

> 10, bilateral PMG

>

[Guest guest]

,

Your feelings are completely normal. Having everything you dream for your child,

given

the choice, who wouldn't take it?

I hope you can take comfort in the fact that your struggles have helped so many

others. I

can not say the same for the family in the big house. You have given many of us

hope,

inspiration and a plethora of knowledge that probably stem from the struggles

you have

endured. You have had a great effect on many families and I am sure you will

continue to

do so.

Perhaps, the unhappy bitterness you see may show that money doesn't buy

everything,

especially happiness. Yes, it may make some things easier, but it probably

didn't do all

they had hoped. Perhaps with all of the new help and fancy gadgets, they have

lost feeling

their purpose in life and no longer feel the happiness that their child can

bring because

they aren't in the trenches working hard for them feeling the pride that every

little miracle

of progress brings or that every smile their child gives is meant for them.

I hope that tomorrow brings you a fresh, reenergized start. is so lucky

to have a

wonderful mother like you. Not all the money in the world can make someone a

great

parent and you have already won that award!

Annette

>

> OK. Here it is, my confession of guilt for my envy. As I have

> written...our son has bilateral diffuse PMG due to CMV

> infection. He is non verbal, seizures, wheelchair, feeding fed etc.

>

> We have a home that is by NO standards appropriate for a growing

> disabled boy...but in this economy surviving is a struggle in itself.

>

> I have met many many families in the disabled community lately, and

> just recently... if anyone out there gets a magazine

> called " Exceptional Parent " it features a family we know in CT who

> built a fabulous new home for their disabled son. I heard through

> the grapevine... " big settlement for CP due to birth trauma "

>

> This is the 4th family I know that have a birth trauma baby, and are

> now living in a wealthy and comfortable lifestyle. Huge homes, all

> medical bills paid, elevators, pools, and one even has a mercedes

> benz for Mom...because she " deserves it " .... and if you read the

> article...and you live in tight quarters with a child who you only

> WISH you had a pool to get him into... that envy creeps in.

>

> Now...don't get me wrong...this is a lovely family...but I am so

> jealous when I see people like this..because so far...all of them

> have changed...and none of them keep in touch with any of

> us " strugglers " any more.

>

> Someone out there...just tell me...that my broken heart for how hard

> it is for our family...and how much pain my back endures lifting

> him...and how I have to work a part time job in the middle of the

> night from home..just to keep the bills paid... is an ok feeling.

>

> I keep looking at that article...it doesnt mention a lawsuit...but

> the family was a struggling family before. Now they have everything

> they need...and they glorified it in a magazine that many people

> read...who can never afford to build a perfect home.... because we

> do not have anyone to SUE. has PMG, and always

> will...because I got sick...with a virus. His birth was normal.

>

> Anyways...I have been praying this afternoon...to not feel

> jealous..and it just isnt working. If you see the article...its the

> July front cover...you'll see why.

>

> Has anyone else out there encountered this?

>

> Much love to all my fellow " stugglers " ,, Mom to , age

> 10, bilateral PMG

>

[Guest guest]

Hi All, I supose we are lucky in Australia as almost every thing we need is

free, but there is still a lot of out of pocket expenses. I am not wealthy

but decided to postpone my retirement and have exteded my daughters house

for her,no grand mansion, just a bedroom for eveyone. I found a wonderful

builder who has been a god send. He has put in decks for Torin to crawl

outside on and he has done a beautiful job. My son in law is working hard

to finish things off. I so wish I could win a lottery so I could do more,

but still things are a little easier for them now. Even the carpet have made

a big difference.

Torin is having a barium swallow today and had a pH 24 hr recording last

week to try to show how bad his reflux is. It just goes from one thing to

another. I have been busy at University studing to be a Teacher of the Deaf

to help Torin, and they have all had the flu. I called in on my one day off

to find everything in a mess and my daughter had lost the plot with

exhaustion. I just picked up Torin and took him home and put her to bed. You

all know what I mean, exhaustion.

I only wish I could wave a magic wand and get 3 wishes. 1. Torin to talk. 2.

Torin to walk. 3 Him to be a normal little boy. Stupid grandma but still I

hope you all don't mind my rambling on here as if I talk about it to my

friends they do not understand or give sympathy.

Grandma Carol Torin 2 PMG hemiplagia deaf my wonderful little red haired

monkey.

_____

<http://promos.hotbar.com/promos/promodll.dll?RunPromo & El= & SG= & RAND=72245 & pa

rtner=spamblockerutility> Upgrade Your Email - Click here!

[Guest guest]

Thanks Sue... I hear you. I do. I feel better today. I believe my CMV

exposure, by the way, was because of my daughter's day care center...but who can

ever really prove where you pick up a virus. It just happens sometimes. It

sucks. I think the hardest thing for me... was when was about 6 years

old and I lost my full time job (I was an HR Director making excellent money)...

Shortly after, he needed his hip surgery...and then things got harder and harder

and harder with his medical condition one thing just after the other. When he

was little... he was more stable, easier to have someone watch him. Now, only a

nurse can watch him, or me. So we have become real strugglers financially,

because the medical bills didnt go away.

I have learned how to work the system...get more benefits for him. etc. I

found a part time job which allows me to work flexibly from home (but even that

exhausts me)... and we still are barely making it. Gas in Connecticut right

now... $4.52 a gallon today. It is just sick.

I would love to get the hell out of New England, but my other two kids are

doing so well here. And s school is awesome... of course, we need my

husband's job...and the real estate market SUCKS...so... here we sit in our NOT

so handicapped accessible house.

Well back to the battle...and the love of my awesome family.

Keep up your struggle too... Warm regards...

ryansmom0801 wrote:

Hi .

I think it is completely normal to feel the way you do. goes to

school with kids of all economic backgrounds. Some of the families we

know have tons of money, massive houses, all the equipment you could

ask for and then some... and some of them live in apartments, ride the

bus, etc etc... then there's us somewhere in the middle.

Some got their money from settlements related to their child's

disability, some worked really hard for it, and some were just lucky.

I have a sister who has 2 " typical " kids who just married really well.

For whatever reason this is not our path at this time, we have to work

hard for what we get, maybe it makes us appreciate it more, who knows.

I do know that I would certainly appreciate NOT having to work for

everything... LoL.

's PMG is caused by CMV, so we too have no one to blame or sue.

Yet, I do have someone to blame...myself... and my employer. You see I

am a nurse and it's highly likely that I was exposed to CMV at work.

So I brought this into our home and my employer's shoddy infection

control practices helped things along as well. I'll never be able to

prove it and unfortunately I still have to work at the same place

because I have wonderful health benefits and need them to make sure

gets what be needs.

Sometimes I throw myself a pity party, but inevitably, as soon as I

do, I meet someone who is way worse off than me and I feel foolish for

feeling sorry for myself. Maybe that's God's way of keeping me in check.

Anyway, I just wanted to let you know that you are not alone, we all

feel a pang of envy once in a while. For me, more than the money

thing, I am sometimes envious of the mom's on this list whose children

are far more advanced that , but then I think " Well this is the

hand I was dealt, I guess I have to play it out and see what happens. "

Hope you're feeling better about things today!

Take care.

Sue

Mom to Meghan(12)and (almost 7) BFPP, mod spastic quad cp

-- In polymicrogyria , " jhasselberger@... "

wrote:

>

> OK. Here it is, my confession of guilt for my envy. As I have

> written...our son has bilateral diffuse PMG due to CMV

> infection. He is non verbal, seizures, wheelchair, feeding fed etc.

>

> We have a home that is by NO standards appropriate for a growing

> disabled boy...but in this economy surviving is a struggle in itself.

>

> I have met many many families in the disabled community lately, and

> just recently... if anyone out there gets a magazine

> called " Exceptional Parent " it features a family we know in CT who

> built a fabulous new home for their disabled son. I heard through

> the grapevine... " big settlement for CP due to birth trauma "

>

> This is the 4th family I know that have a birth trauma baby, and are

> now living in a wealthy and comfortable lifestyle. Huge homes, all

> medical bills paid, elevators, pools, and one even has a mercedes

> benz for Mom...because she " deserves it " .... and if you read the

> article...and you live in tight quarters with a child who you only

> WISH you had a pool to get him into... that envy creeps in.

>

> Now...don't get me wrong...this is a lovely family...but I am so

> jealous when I see people like this..because so far...all of them

> have changed...and none of them keep in touch with any of

> us " strugglers " any more.

>

> Someone out there...just tell me...that my broken heart for how hard

> it is for our family...and how much pain my back endures lifting

> him...and how I have to work a part time job in the middle of the

> night from home..just to keep the bills paid... is an ok feeling.

>

> I keep looking at that article...it doesnt mention a lawsuit...but

> the family was a struggling family before. Now they have everything

> they need...and they glorified it in a magazine that many people

> read...who can never afford to build a perfect home.... because we

> do not have anyone to SUE. has PMG, and always

> will...because I got sick...with a virus. His birth was normal.

>

> Anyways...I have been praying this afternoon...to not feel

> jealous..and it just isnt working. If you see the article...its the

> July front cover...you'll see why.

>

> Has anyone else out there encountered this?

>

> Much love to all my fellow " stugglers " ,, Mom to , age

> 10, bilateral PMG

>

Hasselberger Primerica Financial Services

[Guest guest]

--

If you didn't have these moments, we'd have to wonder if you're

really human. ;o)

I know what you mean. Sometimes I feel the same way about stuff

within my family. At church it can be especially hard -- here are

these great families, happy, *intact,* with neurotypical kids...

It's hard not to want those things that seem so much like they'd make

life easier, isn't it? These children already suffer, strive, and

bear enough. Couldn't we have something be easy? Sometimes it's a

physical pain...

You've been such a blessing to me. Reading your posts and responses

has been a balm as I've read and researched and waded through the

beginning years of the " new normal " (on several different levels)

here. Thank you for your encouragement, .

Here's some back for you. ;o)

I hope you rest well and can rise, draw upon strengths that clearly

run so deep in you and your family, be renewed and refreshed, ready

to go again. If you like, one of my favorite texts is posted on my

blog... Hebrews 12:12,13 www.duramater5.blogspot.com/

Blessings to you,

mom to 5

[Guest guest]

Dear ,

I totally " get " the envy part. My envy comes from parents who have

non-disabled kids. Having lived with andra's PMG diagnosis for over a

year now, my husband and I are still learning to separate our beautiful

girl from the kids that don't have special needs - especially the families

that " complain " that their kids are running all over the place. They seem

to have difficulty controlling their kids (no doesn't mean no in their

homes). To myself, I just roll my eyes thinking that if you actually

meant no when you said it and disciplined you wouldn't have these big huge

problems in your life. If you want problems, walk in my shoes baby.

In addition, I see so many children in homes that lack discipline, some

lacking love, some lacking attention. I wonder why " us " . We lavish these

things on her. (She's been biting and we've finally had to teach her the

word " no " - yeah!!!) We don't know why andra has PMG. Assumably, a

rare genetic fluke.

That said, material things are just that...material. I hope that you've

spent time getting signed up for all of the services your state offers. I

know in MN, we have a pretty good support structure for kids with

disabilities. We're in the process of getting andra her own social

worker to help us fight for services she could get for free. This could

include a free in-home assistant, speech device paid for, etc. Please do

all of your research to get the kind of help your family needs.

Hearing you!

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

" jhasselberger@... "

Sent by: polymicrogyria

07/12/2008 04:09 PM

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polymicrogyria

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Subject

Guilty for my ENVY!! Anyone else experience this??

OK. Here it is, my confession of guilt for my envy. As I have

written...our son has bilateral diffuse PMG due to CMV

infection. He is non verbal, seizures, wheelchair, feeding fed etc.

We have a home that is by NO standards appropriate for a growing

disabled boy...but in this economy surviving is a struggle in itself.

I have met many many families in the disabled community lately, and

just recently... if anyone out there gets a magazine

called " Exceptional Parent " it features a family we know in CT who

built a fabulous new home for their disabled son. I heard through

the grapevine... " big settlement for CP due to birth trauma "

This is the 4th family I know that have a birth trauma baby, and are

now living in a wealthy and comfortable lifestyle. Huge homes, all

medical bills paid, elevators, pools, and one even has a mercedes

benz for Mom...because she " deserves it " .... and if you read the

article...and you live in tight quarters with a child who you only

WISH you had a pool to get him into... that envy creeps in.

Now...don't get me wrong...this is a lovely family...but I am so

jealous when I see people like this..because so far...all of them

have changed...and none of them keep in touch with any of

us " strugglers " any more.

Someone out there...just tell me...that my broken heart for how hard

it is for our family...and how much pain my back endures lifting

him...and how I have to work a part time job in the middle of the

night from home..just to keep the bills paid... is an ok feeling.

I keep looking at that article...it doesnt mention a lawsuit...but

the family was a struggling family before. Now they have everything

they need...and they glorified it in a magazine that many people

read...who can never afford to build a perfect home.... because we

do not have anyone to SUE. has PMG, and always

will...because I got sick...with a virus. His birth was normal.

Anyways...I have been praying this afternoon...to not feel

jealous..and it just isnt working. If you see the article...its the

July front cover...you'll see why.

Has anyone else out there encountered this?

Much love to all my fellow " stugglers " ,, Mom to , age

10, bilateral PMG

[Guest guest]

Thanks Rochelle... I know exactly what you mean about people with " normal "

children... but they will never be the same, and... after 10 1/2 years now of

fighting this fight... I find that I get more envious over people with disabled

children who have nothing...sue someone...and suddenly come into enormous pools

of money. They no longer have to fight, scream and advocate to the point of

exhaustion... huge homes, special equipment, private nursing, pools, vacations..

not having to work...ever again.... yes..their child is disabled too... and

no..money doesnt buy happiness...but it sure does buy freedom, time, and a

better quality of life (if you do it right )

I have two other children, a 12 year old daughter, and a 7 year old

son... is our middle. So we are in both worlds...and the " normal world "

doesnt get it...they never will. I look at people sometimes and wonder " why the

heck are you worried about such a stupid thing as the PTA, or local politics "

When I am engaged in a 24/7 battle for life here.

But what you have to do... no matter how hard it is... is focus on what you

have...we have.. to be grateful for. Here is what gets... at no

cost.... and I am fighting for more:

ALL medical visits at 100%, all equipment at 100%, prescriptions at no cost to

us ( Beckett Model Waiver program/title 19)

In home nursing, at no cost, for 56 hours A WEEK. (that started in 2007...and

it has litterally saved my life)...

He is in a NON Mainstreamed school, the town pays for it...they bus him

privately, and he gets 4 hours of PT, 4 hours of OT, special education, adaptive

assistance technology, speech therapy.

AT HOME physical therapy one time per week.

His lift van was paid for 100%... (these kids get heavy and need

wheelchairs)...

Tax exempt status for our town (due to the fact that the van is handicapped)

All of his diapers, wipes, formula, enteral supplies, and medical supplies are

paid for 100% and shipped to me.

An $8000 SLEEP SAFE BED system was just delivered last week for him. WE paid

nothing.

A $600 a year grant for " respite services " from DMR. And a $2000 grant for

home renovations (yea....that didnt go far)

AND every penny out of our pocket for medical expenses is also a tax

deduction...talk to your accountant, if you medical expenses exceed 7% of your

gross income...you can deduct them. Ours always do...and its a much better tax

break than any FSA that employers offer.

I used to work... Now that is so much more involved, I can not

work.... we are battling for every single strand of hope to keep our house.

So when I see the homes of the 4 families I know with birth trauma CP

babies... yes...they had to go through years of litigation.... but their

children have the best of the best...and there is no more fighting,....

But that is not our reality. In 's case, PMG was clearly caused by CMV

infection....and that is just the way it is. I guess knowing why it happened

helped, but who am going to sue... myself?? lol.

I guess the amazing thing is how much of a great fighter I have become. And

how my purpose in this life is clearly starting to reveal itself. And

is.... worth...every cent of the struggle.

I just wish I could have a rest.....at least once in a while... to ease the

stress. I'm 42....I've been doing the PMG Dance for 10 years now. And I know it

isnt ever going to get easier.

So put on your boxing gloves, girl.... and do it with a smile. And

remember that those normal families... are not in your shoes...and will never

have your perspective. Focus on improving your daughter's life. Hugs.

H.

raquandt@... wrote:

Dear ,

I totally " get " the envy part. My envy comes from parents who have

non-disabled kids. Having lived with andra's PMG diagnosis for over a

year now, my husband and I are still learning to separate our beautiful

girl from the kids that don't have special needs - especially the families

that " complain " that their kids are running all over the place. They seem

to have difficulty controlling their kids (no doesn't mean no in their

homes). To myself, I just roll my eyes thinking that if you actually

meant no when you said it and disciplined you wouldn't have these big huge

problems in your life. If you want problems, walk in my shoes baby.

In addition, I see so many children in homes that lack discipline, some

lacking love, some lacking attention. I wonder why " us " . We lavish these

things on her. (She's been biting and we've finally had to teach her the

word " no " - yeah!!!) We don't know why andra has PMG. Assumably, a

rare genetic fluke.

That said, material things are just that...material. I hope that you've

spent time getting signed up for all of the services your state offers. I

know in MN, we have a pretty good support structure for kids with

disabilities. We're in the process of getting andra her own social

worker to help us fight for services she could get for free. This could

include a free in-home assistant, speech device paid for, etc. Please do

all of your research to get the kind of help your family needs.

Hearing you!

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

" jhasselberger@... "

Sent by: polymicrogyria

07/12/2008 04:09 PM

Please respond to

polymicrogyria

To

polymicrogyria

cc

Subject

Guilty for my ENVY!! Anyone else experience this??

OK. Here it is, my confession of guilt for my envy. As I have

written...our son has bilateral diffuse PMG due to CMV

infection. He is non verbal, seizures, wheelchair, feeding fed etc.

We have a home that is by NO standards appropriate for a growing

disabled boy...but in this economy surviving is a struggle in itself.

I have met many many families in the disabled community lately, and

just recently... if anyone out there gets a magazine

called " Exceptional Parent " it features a family we know in CT who

built a fabulous new home for their disabled son. I heard through

the grapevine... " big settlement for CP due to birth trauma "

This is the 4th family I know that have a birth trauma baby, and are

now living in a wealthy and comfortable lifestyle. Huge homes, all

medical bills paid, elevators, pools, and one even has a mercedes

benz for Mom...because she " deserves it " .... and if you read the

article...and you live in tight quarters with a child who you only

WISH you had a pool to get him into... that envy creeps in.

Now...don't get me wrong...this is a lovely family...but I am so

jealous when I see people like this..because so far...all of them

have changed...and none of them keep in touch with any of

us " strugglers " any more.

Someone out there...just tell me...that my broken heart for how hard

it is for our family...and how much pain my back endures lifting

him...and how I have to work a part time job in the middle of the

night from home..just to keep the bills paid... is an ok feeling.

I keep looking at that article...it doesnt mention a lawsuit...but

the family was a struggling family before. Now they have everything

they need...and they glorified it in a magazine that many people

read...who can never afford to build a perfect home.... because we

do not have anyone to SUE. has PMG, and always

will...because I got sick...with a virus. His birth was normal.

Anyways...I have been praying this afternoon...to not feel

jealous..and it just isnt working. If you see the article...its the

July front cover...you'll see why.

Has anyone else out there encountered this?

Much love to all my fellow " stugglers " ,, Mom to , age

10, bilateral PMG

[Guest guest]

God Bless you ... " HERE'S TO THE NEW NORMAL!!! "

Love,

carrie_and_kids wrote:

--

If you didn't have these moments, we'd have to wonder if you're

really human. ;o)

I know what you mean. Sometimes I feel the same way about stuff

within my family. At church it can be especially hard -- here are

these great families, happy, *intact,* with neurotypical kids...

It's hard not to want those things that seem so much like they'd make

life easier, isn't it? These children already suffer, strive, and

bear enough. Couldn't we have something be easy? Sometimes it's a

physical pain...

You've been such a blessing to me. Reading your posts and responses

has been a balm as I've read and researched and waded through the

beginning years of the " new normal " (on several different levels)

here. Thank you for your encouragement, .

Here's some back for you. ;o)

I hope you rest well and can rise, draw upon strengths that clearly

run so deep in you and your family, be renewed and refreshed, ready

to go again. If you like, one of my favorite texts is posted on my

blog... Hebrews 12:12,13 www.duramater5.blogspot.com/

Blessings to you,

mom to 5

Hasselberger Primerica Financial Services

[Guest guest]

Hi and others,

I just wanted to share this with a group that may or may not " get it " .

We're expecting our second baby in November. Astonishingly, there have

been people who look at me with bewilderment when I tell them that we're

having another one? Some don't even say congratulations? I think they

are just trying to manage the shock and awe in their faces.

We planned on having 3. With andra's condition and my age (38) we're

stopping at two...although if you'd ask my husband we're still having

three. Yeah, right...

Anyway, I think there are a handful of people that either wouldn't risk

having another child with a disability or can't imagine trying to raise

more than one child when one has a disability. To put it in perspective,

most of the " shock " are on the faces of people with wealth. Where money

plays a pivitol role in who they are as people - how they define

themselves. It's weird and sad. All that money, yet clueless about what

life is really about.

Our reasoning for having a second is that we wanted andra to have a

sibling to tease and to tease her. We wanted one to help her as Mark and

I age and die. I, more than my husband, had to come to terms with the

fact that I could have another child with a disability before getting

pregnant. But, I've rarely let fear run my life and this wasn't the time

to start. I put my fear aside and did this for all three of us. We

expect to have another amazing child who will bring us the kind of joy

andra already has.

Rochelle

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

JULIE HASSELBERGER

Sent by: polymicrogyria

07/14/2008 11:23 AM

Please respond to

polymicrogyria

To

polymicrogyria

cc

Subject

Re: Guilty for my ENVY!! Anyone else experience this??

Thanks Rochelle... I know exactly what you mean about people with " normal "

children... but they will never be the same, and... after 10 1/2 years now

of fighting this fight... I find that I get more envious over people with

disabled children who have nothing...sue someone...and suddenly come into

enormous pools of money. They no longer have to fight, scream and advocate

to the point of exhaustion... huge homes, special equipment, private

nursing, pools, vacations.. not having to work...ever again.... yes..their

child is disabled too... and no..money doesnt buy happiness...but it sure

does buy freedom, time, and a better quality of life (if you do it right )

I have two other children, a 12 year old daughter, and a 7 year old

son... is our middle. So we are in both worlds...and the " normal

world " doesnt get it...they never will. I look at people sometimes and

wonder " why the heck are you worried about such a stupid thing as the PTA,

or local politics " When I am engaged in a 24/7 battle for life here.

But what you have to do... no matter how hard it is... is focus on what

you have...we have.. to be grateful for. Here is what gets... at no

cost.... and I am fighting for more:

ALL medical visits at 100%, all equipment at 100%, prescriptions at no

cost to us ( Beckett Model Waiver program/title 19)

In home nursing, at no cost, for 56 hours A WEEK. (that started in

2007...and it has litterally saved my life)...

He is in a NON Mainstreamed school, the town pays for it...they bus him

privately, and he gets 4 hours of PT, 4 hours of OT, special education,

adaptive assistance technology, speech therapy.

AT HOME physical therapy one time per week.

His lift van was paid for 100%... (these kids get heavy and need

wheelchairs)...

Tax exempt status for our town (due to the fact that the van is

handicapped)

All of his diapers, wipes, formula, enteral supplies, and medical supplies

are paid for 100% and shipped to me.

An $8000 SLEEP SAFE BED system was just delivered last week for him. WE

paid nothing.

A $600 a year grant for " respite services " from DMR. And a $2000 grant for

home renovations (yea....that didnt go far)

AND every penny out of our pocket for medical expenses is also a tax

deduction...talk to your accountant, if you medical expenses exceed 7% of

your gross income...you can deduct them. Ours always do...and its a much

better tax break than any FSA that employers offer.

I used to work... Now that is so much more involved, I can not

work.... we are battling for every single strand of hope to keep our

house.

So when I see the homes of the 4 families I know with birth trauma CP

babies... yes...they had to go through years of litigation.... but their

children have the best of the best...and there is no more fighting,....

But that is not our reality. In 's case, PMG was clearly caused by

CMV infection....and that is just the way it is. I guess knowing why it

happened helped, but who am going to sue... myself?? lol.

I guess the amazing thing is how much of a great fighter I have become.

And how my purpose in this life is clearly starting to reveal itself. And

is.... worth...every cent of the struggle.

I just wish I could have a rest.....at least once in a while... to ease

the stress. I'm 42....I've been doing the PMG Dance for 10 years now. And

I know it isnt ever going to get easier.

So put on your boxing gloves, girl.... and do it with a smile. And

remember that those normal families... are not in your shoes...and will

never have your perspective. Focus on improving your daughter's life.

Hugs. H.

raquandt@... wrote:

Dear ,

I totally " get " the envy part. My envy comes from parents who have

non-disabled kids. Having lived with andra's PMG diagnosis for over a

year now, my husband and I are still learning to separate our beautiful

girl from the kids that don't have special needs - especially the families

that " complain " that their kids are running all over the place. They seem

to have difficulty controlling their kids (no doesn't mean no in their

homes). To myself, I just roll my eyes thinking that if you actually

meant no when you said it and disciplined you wouldn't have these big huge

problems in your life. If you want problems, walk in my shoes baby.

In addition, I see so many children in homes that lack discipline, some

lacking love, some lacking attention. I wonder why " us " . We lavish these

things on her. (She's been biting and we've finally had to teach her the

word " no " - yeah!!!) We don't know why andra has PMG. Assumably, a

rare genetic fluke.

That said, material things are just that...material. I hope that you've

spent time getting signed up for all of the services your state offers. I

know in MN, we have a pretty good support structure for kids with

disabilities. We're in the process of getting andra her own social

worker to help us fight for services she could get for free. This could

include a free in-home assistant, speech device paid for, etc. Please do

all of your research to get the kind of help your family needs.

Hearing you!

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

" jhasselberger@... "

Sent by: polymicrogyria

07/12/2008 04:09 PM

Please respond to

polymicrogyria

To

polymicrogyria

cc

Subject

Guilty for my ENVY!! Anyone else experience this??

OK. Here it is, my confession of guilt for my envy. As I have

written...our son has bilateral diffuse PMG due to CMV

infection. He is non verbal, seizures, wheelchair, feeding fed etc.

We have a home that is by NO standards appropriate for a growing

disabled boy...but in this economy surviving is a struggle in itself.

I have met many many families in the disabled community lately, and

just recently... if anyone out there gets a magazine

called " Exceptional Parent " it features a family we know in CT who

built a fabulous new home for their disabled son. I heard through

the grapevine... " big settlement for CP due to birth trauma "

This is the 4th family I know that have a birth trauma baby, and are

now living in a wealthy and comfortable lifestyle. Huge homes, all

medical bills paid, elevators, pools, and one even has a mercedes

benz for Mom...because she " deserves it " .... and if you read the

article...and you live in tight quarters with a child who you only

WISH you had a pool to get him into... that envy creeps in.

Now...don't get me wrong...this is a lovely family...but I am so

jealous when I see people like this..because so far...all of them

have changed...and none of them keep in touch with any of

us " strugglers " any more.

Someone out there...just tell me...that my broken heart for how hard

it is for our family...and how much pain my back endures lifting

him...and how I have to work a part time job in the middle of the

night from home..just to keep the bills paid... is an ok feeling.

I keep looking at that article...it doesnt mention a lawsuit...but

the family was a struggling family before. Now they have everything

they need...and they glorified it in a magazine that many people

read...who can never afford to build a perfect home.... because we

do not have anyone to SUE. has PMG, and always

will...because I got sick...with a virus. His birth was normal.

Anyways...I have been praying this afternoon...to not feel

jealous..and it just isnt working. If you see the article...its the

July front cover...you'll see why.

Has anyone else out there encountered this?

Much love to all my fellow " stugglers " ,, Mom to , age

10, bilateral PMG

[Guest guest]

Rochelle,

This is my first time posting on the list.

I do watch and read. I just wanted to tell

you that I understand. It took me 10 years

to have another child. And now I watch for

ANY missed milestones. It is scary - but

I think it is great for your family.

So. I get it.

Sent from my iPhone

Hi and others,

I just wanted to share this with a group that may or may not " get it " .

We're expecting our second baby in November. Astonishingly, there have

been people who look at me with bewilderment when I tell them that we're

having another one? Some don't even say congratulations? I think they

are just trying to manage the shock and awe in their faces.

We planned on having 3. With andra's condition and my age (38) we're

stopping at two...although if you'd ask my husband we're still having

three. Yeah, right...

Anyway, I think there are a handful of people that either wouldn't risk

having another child with a disability or can't imagine trying to raise

more than one child when one has a disability. To put it in perspective,

most of the " shock " are on the faces of people with wealth. Where money

plays a pivitol role in who they are as people - how they define

themselves. It's weird and sad. All that money, yet clueless about what

life is really about.

Our reasoning for having a second is that we wanted andra to have a

sibling to tease and to tease her. We wanted one to help her as Mark and

I age and die. I, more than my husband, had to come to terms with the

fact that I could have another child with a disability before getting

pregnant. But, I've rarely let fear run my life and this wasn't the time

to start. I put my fear aside and did this for all three of us. We

expect to have another amazing child who will bring us the kind of joy

andra already has.

Rochelle

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

JULIE HASSELBERGER

Sent by: polymicrogyria

07/14/2008 11:23 AM

Please respond to

polymicrogyria

To

polymicrogyria

cc

Subject

Re: Guilty for my ENVY!! Anyone else experience this??

Thanks Rochelle... I know exactly what you mean about people with " normal "

children... but they will never be the same, and... after 10 1/2 years now

of fighting this fight... I find that I get more envious over people with

disabled children who have nothing...sue someone...and suddenly come into

enormous pools of money. They no longer have to fight, scream and advocate

to the point of exhaustion... huge homes, special equipment, private

nursing, pools, vacations.. not having to work...ever again.... yes..their

child is disabled too... and no..money doesnt buy happiness...but it sure

does buy freedom, time, and a better quality of life (if you do it right )

I have two other children, a 12 year old daughter, and a 7 year old

son... is our middle. So we are in both worlds...and the " normal

world " doesnt get it...they never will. I look at people sometimes and

wonder " why the heck are you worried about such a stupid thing as the PTA,

or local politics " When I am engaged in a 24/7 battle for life here.

But what you have to do... no matter how hard it is... is focus on what

you have...we have.. to be grateful for. Here is what gets... at no

cost.... and I am fighting for more:

ALL medical visits at 100%, all equipment at 100%, prescriptions at no

cost to us ( Beckett Model Waiver program/title 19)

In home nursing, at no cost, for 56 hours A WEEK. (that started in

2007...and it has litterally saved my life)...

He is in a NON Mainstreamed school, the town pays for it...they bus him

privately, and he gets 4 hours of PT, 4 hours of OT, special education,

adaptive assistance technology, speech therapy.

AT HOME physical therapy one time per week.

His lift van was paid for 100%... (these kids get heavy and need

wheelchairs)...

Tax exempt status for our town (due to the fact that the van is

handicapped)

All of his diapers, wipes, formula, enteral supplies, and medical supplies

are paid for 100% and shipped to me.

An $8000 SLEEP SAFE BED system was just delivered last week for him. WE

paid nothing.

A $600 a year grant for " respite services " from DMR. And a $2000 grant for

home renovations (yea....that didnt go far)

AND every penny out of our pocket for medical expenses is also a tax

deduction...talk to your accountant, if you medical expenses exceed 7% of

your gross income...you can deduct them. Ours always do...and its a much

better tax break than any FSA that employers offer.

I used to work... Now that is so much more involved, I can not

work.... we are battling for every single strand of hope to keep our

house.

So when I see the homes of the 4 families I know with birth trauma CP

babies... yes...they had to go through years of litigation.... but their

children have the best of the best...and there is no more fighting,....

But that is not our reality. In 's case, PMG was clearly caused by

CMV infection....and that is just the way it is. I guess knowing why it

happened helped, but who am going to sue... myself?? lol.

I guess the amazing thing is how much of a great fighter I have become.

And how my purpose in this life is clearly starting to reveal itself. And

is.... worth...every cent of the struggle.

I just wish I could have a rest.....at least once in a while... to ease

the stress. I'm 42....I've been doing the PMG Dance for 10 years now. And

I know it isnt ever going to get easier.

So put on your boxing gloves, girl.... and do it with a smile. And

remember that those normal families... are not in your shoes...and will

never have your perspective. Focus on improving your daughter's life.

Hugs. H.

raquandt@... wrote:

Dear ,

I totally " get " the envy part. My envy comes from parents who have

non-disabled kids. Having lived with andra's PMG diagnosis for over a

year now, my husband and I are still learning to separate our beautiful

girl from the kids that don't have special needs - especially the families

that " complain " that their kids are running all over the place. They seem

to have difficulty controlling their kids (no doesn't mean no in their

homes). To myself, I just roll my eyes thinking that if you actually

meant no when you said it and disciplined you wouldn't have these big huge

problems in your life. If you want problems, walk in my shoes baby.

In addition, I see so many children in homes that lack discipline, some

lacking love, some lacking attention. I wonder why " us " . We lavish these

things on her. (She's been biting and we've finally had to teach her the

word " no " - yeah!!!) We don't know why andra has PMG. Assumably, a

rare genetic fluke.

That said, material things are just that...material. I hope that you've

spent time getting signed up for all of the services your state offers. I

know in MN, we have a pretty good support structure for kids with

disabilities. We're in the process of getting andra her own social

worker to help us fight for services she could get for free. This could

include a free in-home assistant, speech device paid for, etc. Please do

all of your research to get the kind of help your family needs.

Hearing you!

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

" jhasselberger@... "

Sent by: polymicrogyria

07/12/2008 04:09 PM

Please respond to

polymicrogyria

To

polymicrogyria

cc

Subject

Guilty for my ENVY!! Anyone else experience this??

OK. Here it is, my confession of guilt for my envy. As I have

written...our son has bilateral diffuse PMG due to CMV

infection. He is non verbal, seizures, wheelchair, feeding fed etc.

We have a home that is by NO standards appropriate for a growing

disabled boy...but in this economy surviving is a struggle in itself.

I have met many many families in the disabled community lately, and

just recently... if anyone out there gets a magazine

called " Exceptional Parent " it features a family we know in CT who

built a fabulous new home for their disabled son. I heard through

the grapevine... " big settlement for CP due to birth trauma "

This is the 4th family I know that have a birth trauma baby, and are

now living in a wealthy and comfortable lifestyle. Huge homes, all

medical bills paid, elevators, pools, and one even has a mercedes

benz for Mom...because she " deserves it " .... and if you read the

article...and you live in tight quarters with a child who you only

WISH you had a pool to get him into... that envy creeps in.

Now...don't get me wrong...this is a lovely family...but I am so

jealous when I see people like this..because so far...all of them

have changed...and none of them keep in touch with any of

us " strugglers " any more.

Someone out there...just tell me...that my broken heart for how hard

it is for our family...and how much pain my back endures lifting

him...and how I have to work a part time job in the middle of the

night from home..just to keep the bills paid... is an ok feeling.

I keep looking at that article...it doesnt mention a lawsuit...but

the family was a struggling family before. Now they have everything

they need...and they glorified it in a magazine that many people

read...who can never afford to build a perfect home.... because we

do not have anyone to SUE. has PMG, and always

will...because I got sick...with a virus. His birth was normal.

Anyways...I have been praying this afternoon...to not feel

jealous..and it just isnt working. If you see the article...its the

July front cover...you'll see why.

Has anyone else out there encountered this?

Much love to all my fellow " stugglers " ,, Mom to , age

10, bilateral PMG

[Guest guest]

Rochelle,

My little guy's PMG is apparently a genetic fluke as well (no other

explanation after extensive testing). He has four older siblings, all

more or less ;o) neurotypical. So that's my experience.

Just wanted to say: You go girl. Scared is not a fun or useful place

to be. Good for you for stepping out and running for it. (Applauding)

Can't wait to see your birth announcement here!

Hugs and blessings,

mom to 5

[Guest guest]

Rochelle,

We went on to have another child after Trevor.

He is 3 years younger.

We got the same looks but it was our decision and we went with it.

It was the right decision for our family.

I can't imagine our lives without Noah........and he has no special needs.

Donna

Re: Guilty for my ENVY!! Anyone else experience

this??

Hi and others,

I just wanted to share this with a group that may or may not " get it " .

We're expecting our second baby in November. Astonishingly, there have

been people who look at me with bewilderment when I tell them that we're

having another one? Some don't even say congratulations? I think they

are just trying to manage the shock and awe in their faces.

We planned on having 3. With andra's condition and my age (38) we're

stopping at two...although if you'd ask my husband we're still having

three. Yeah, right...

Anyway, I think there are a handful of people that either wouldn't risk

having another child with a disability or can't imagine trying to raise

more than one child when one has a disability. To put it in perspective,

most of the " shock " are on the faces of people with wealth. Where money

plays a pivitol role in who they are as people - how they define

themselves. It's weird and sad. All that money, yet clueless about what

life is really about.

Our reasoning for having a second is that we wanted andra to have a

sibling to tease and to tease her. We wanted one to help her as Mark and

I age and die. I, more than my husband, had to come to terms with the

fact that I could have another child with a disability before getting

pregnant. But, I've rarely let fear run my life and this wasn't the time

to start. I put my fear aside and did this for all three of us. We

expect to have another amazing child who will bring us the kind of joy

andra already has.

Rochelle

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

JULIE HASSELBERGER

Sent by: polymicrogyria

07/14/2008 11:23 AM

Please respond to

polymicrogyria

To

polymicrogyria

cc

Subject

Re: Guilty for my ENVY!! Anyone else experience this??

Thanks Rochelle... I know exactly what you mean about people with " normal "

children... but they will never be the same, and... after 10 1/2 years now

of fighting this fight... I find that I get more envious over people with

disabled children who have nothing...sue someone...and suddenly come into

enormous pools of money. They no longer have to fight, scream and advocate

to the point of exhaustion... huge homes, special equipment, private

nursing, pools, vacations.. not having to work...ever again.... yes..their

child is disabled too... and no..money doesnt buy happiness...but it sure

does buy freedom, time, and a better quality of life (if you do it right )

I have two other children, a 12 year old daughter, and a 7 year old

son... is our middle. So we are in both worlds...and the " normal

world " doesnt get it...they never will. I look at people sometimes and

wonder " why the heck are you worried about such a stupid thing as the PTA,

or local politics " When I am engaged in a 24/7 battle for life here.

But what you have to do... no matter how hard it is... is focus on what

you have...we have.. to be grateful for. Here is what gets... at no

cost.... and I am fighting for more:

ALL medical visits at 100%, all equipment at 100%, prescriptions at no

cost to us ( Beckett Model Waiver program/title 19)

In home nursing, at no cost, for 56 hours A WEEK. (that started in

2007...and it has litterally saved my life)...

He is in a NON Mainstreamed school, the town pays for it...they bus him

privately, and he gets 4 hours of PT, 4 hours of OT, special education,

adaptive assistance technology, speech therapy.

AT HOME physical therapy one time per week.

His lift van was paid for 100%... (these kids get heavy and need

wheelchairs)...

Tax exempt status for our town (due to the fact that the van is

handicapped)

All of his diapers, wipes, formula, enteral supplies, and medical supplies

are paid for 100% and shipped to me.

An $8000 SLEEP SAFE BED system was just delivered last week for him. WE

paid nothing.

A $600 a year grant for " respite services " from DMR. And a $2000 grant for

home renovations (yea....that didnt go far)

AND every penny out of our pocket for medical expenses is also a tax

deduction...talk to your accountant, if you medical expenses exceed 7% of

your gross income...you can deduct them. Ours always do...and its a much

better tax break than any FSA that employers offer.

I used to work... Now that is so much more involved, I can not

work.... we are battling for every single strand of hope to keep our

house.

So when I see the homes of the 4 families I know with birth trauma CP

babies... yes...they had to go through years of litigation.... but their

children have the best of the best...and there is no more fighting,....

But that is not our reality. In 's case, PMG was clearly caused by

CMV infection....and that is just the way it is. I guess knowing why it

happened helped, but who am going to sue... myself?? lol.

I guess the amazing thing is how much of a great fighter I have become.

And how my purpose in this life is clearly starting to reveal itself. And

is.... worth...every cent of the struggle.

I just wish I could have a rest.....at least once in a while... to ease

the stress. I'm 42....I've been doing the PMG Dance for 10 years now. And

I know it isnt ever going to get easier.

So put on your boxing gloves, girl.... and do it with a smile. And

remember that those normal families... are not in your shoes...and will

never have your perspective. Focus on improving your daughter's life.

Hugs. H.

raquandt@... wrote:

Dear ,

I totally " get " the envy part. My envy comes from parents who have

non-disabled kids. Having lived with andra's PMG diagnosis for over a

year now, my husband and I are still learning to separate our beautiful

girl from the kids that don't have special needs - especially the families

that " complain " that their kids are running all over the place. They seem

to have difficulty controlling their kids (no doesn't mean no in their

homes). To myself, I just roll my eyes thinking that if you actually

meant no when you said it and disciplined you wouldn't have these big huge

problems in your life. If you want problems, walk in my shoes baby.

In addition, I see so many children in homes that lack discipline, some

lacking love, some lacking attention. I wonder why " us " . We lavish these

things on her. (She's been biting and we've finally had to teach her the

word " no " - yeah!!!) We don't know why andra has PMG. Assumably, a

rare genetic fluke.

That said, material things are just that...material. I hope that you've

spent time getting signed up for all of the services your state offers. I

know in MN, we have a pretty good support structure for kids with

disabilities. We're in the process of getting andra her own social

worker to help us fight for services she could get for free. This could

include a free in-home assistant, speech device paid for, etc. Please do

all of your research to get the kind of help your family needs.

Hearing you!

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

" jhasselberger@... "

Sent by: polymicrogyria

07/12/2008 04:09 PM

Please respond to

polymicrogyria

To

polymicrogyria

cc

Subject

Guilty for my ENVY!! Anyone else experience this??

OK. Here it is, my confession of guilt for my envy. As I have

written...our son has bilateral diffuse PMG due to CMV

infection. He is non verbal, seizures, wheelchair, feeding fed etc.

We have a home that is by NO standards appropriate for a growing

disabled boy...but in this economy surviving is a struggle in itself.

I have met many many families in the disabled community lately, and

just recently... if anyone out there gets a magazine

called " Exceptional Parent " it features a family we know in CT who

built a fabulous new home for their disabled son. I heard through

the grapevine... " big settlement for CP due to birth trauma "

This is the 4th family I know that have a birth trauma baby, and are

now living in a wealthy and comfortable lifestyle. Huge homes, all

medical bills paid, elevators, pools, and one even has a mercedes

benz for Mom...because she " deserves it " .... and if you read the

article...and you live in tight quarters with a child who you only

WISH you had a pool to get him into... that envy creeps in.

Now...don't get me wrong...this is a lovely family...but I am so

jealous when I see people like this..because so far...all of them

have changed...and none of them keep in touch with any of

us " strugglers " any more.

Someone out there...just tell me...that my broken heart for how hard

it is for our family...and how much pain my back endures lifting

him...and how I have to work a part time job in the middle of the

night from home..just to keep the bills paid... is an ok feeling.

I keep looking at that article...it doesnt mention a lawsuit...but

the family was a struggling family before. Now they have everything

they need...and they glorified it in a magazine that many people

read...who can never afford to build a perfect home.... because we

do not have anyone to SUE. has PMG, and always

will...because I got sick...with a virus. His birth was normal.

Anyways...I have been praying this afternoon...to not feel

jealous..and it just isnt working. If you see the article...its the

July front cover...you'll see why.

Has anyone else out there encountered this?

Much love to all my fellow " stugglers " ,, Mom to , age

10, bilateral PMG

[Guest guest]

Dear Rochelle... our decision to have baby number 3, after having been through

so much with ...was one of love, and nurturing. And for me, it gave

a full circle of siblings... one older, one younger...and somehow..we

just said SO WHAT... lets do it. And God gave us ... he was almost 12

pounds at birth...my little giant, so gentle, and so strong. And has a

brother, and a sister. I remember my psychologist at the time, advising me

that having a baby would be a healing experience for me as well... since so much

of 's first year was traumatic. And he was right. used to lay on

my big belly and feel his brother move... and its a miracle. And I never ONCE

thought about " what if this.. or " what if that " ... it didnt matter. Somehow

instinctively I knew was ok, had been ok...but having an addition

to our family..was beautiful.

So I wish the same for you all. Your daughter will be blessed, as you will

be. I would have another if my husband was on the same page about that...but we

are happy.

It all works out....when you choose to make it so. Are you expecting now??

I miss the baby years, it was so much more fun than puberty.

H.

raquandt@... wrote:

Hi and others,

I just wanted to share this with a group that may or may not " get it " .

We're expecting our second baby in November. Astonishingly, there have

been people who look at me with bewilderment when I tell them that we're

having another one? Some don't even say congratulations? I think they

are just trying to manage the shock and awe in their faces.

We planned on having 3. With andra's condition and my age (38) we're

stopping at two...although if you'd ask my husband we're still having

three. Yeah, right...

Anyway, I think there are a handful of people that either wouldn't risk

having another child with a disability or can't imagine trying to raise

more than one child when one has a disability. To put it in perspective,

most of the " shock " are on the faces of people with wealth. Where money

plays a pivitol role in who they are as people - how they define

themselves. It's weird and sad. All that money, yet clueless about what

life is really about.

Our reasoning for having a second is that we wanted andra to have a

sibling to tease and to tease her. We wanted one to help her as Mark and

I age and die. I, more than my husband, had to come to terms with the

fact that I could have another child with a disability before getting

pregnant. But, I've rarely let fear run my life and this wasn't the time

to start. I put my fear aside and did this for all three of us. We

expect to have another amazing child who will bring us the kind of joy

andra already has.

Rochelle

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

JULIE HASSELBERGER

Sent by: polymicrogyria

07/14/2008 11:23 AM

Please respond to

polymicrogyria

To

polymicrogyria

cc

Subject

Re: Guilty for my ENVY!! Anyone else experience this??

Thanks Rochelle... I know exactly what you mean about people with " normal "

children... but they will never be the same, and... after 10 1/2 years now

of fighting this fight... I find that I get more envious over people with

disabled children who have nothing...sue someone...and suddenly come into

enormous pools of money. They no longer have to fight, scream and advocate

to the point of exhaustion... huge homes, special equipment, private

nursing, pools, vacations.. not having to work...ever again.... yes..their

child is disabled too... and no..money doesnt buy happiness...but it sure

does buy freedom, time, and a better quality of life (if you do it right )

I have two other children, a 12 year old daughter, and a 7 year old

son... is our middle. So we are in both worlds...and the " normal

world " doesnt get it...they never will. I look at people sometimes and

wonder " why the heck are you worried about such a stupid thing as the PTA,

or local politics " When I am engaged in a 24/7 battle for life here.

But what you have to do... no matter how hard it is... is focus on what

you have...we have.. to be grateful for. Here is what gets... at no

cost.... and I am fighting for more:

ALL medical visits at 100%, all equipment at 100%, prescriptions at no

cost to us ( Beckett Model Waiver program/title 19)

In home nursing, at no cost, for 56 hours A WEEK. (that started in

2007...and it has litterally saved my life)...

He is in a NON Mainstreamed school, the town pays for it...they bus him

privately, and he gets 4 hours of PT, 4 hours of OT, special education,

adaptive assistance technology, speech therapy.

AT HOME physical therapy one time per week.

His lift van was paid for 100%... (these kids get heavy and need

wheelchairs)...

Tax exempt status for our town (due to the fact that the van is

handicapped)

All of his diapers, wipes, formula, enteral supplies, and medical supplies

are paid for 100% and shipped to me.

An $8000 SLEEP SAFE BED system was just delivered last week for him. WE

paid nothing.

A $600 a year grant for " respite services " from DMR. And a $2000 grant for

home renovations (yea....that didnt go far)

AND every penny out of our pocket for medical expenses is also a tax

deduction...talk to your accountant, if you medical expenses exceed 7% of

your gross income...you can deduct them. Ours always do...and its a much

better tax break than any FSA that employers offer.

I used to work... Now that is so much more involved, I can not

work.... we are battling for every single strand of hope to keep our

house.

So when I see the homes of the 4 families I know with birth trauma CP

babies... yes...they had to go through years of litigation.... but their

children have the best of the best...and there is no more fighting,....

But that is not our reality. In 's case, PMG was clearly caused by

CMV infection....and that is just the way it is. I guess knowing why it

happened helped, but who am going to sue... myself?? lol.

I guess the amazing thing is how much of a great fighter I have become.

And how my purpose in this life is clearly starting to reveal itself. And

is.... worth...every cent of the struggle.

I just wish I could have a rest.....at least once in a while... to ease

the stress. I'm 42....I've been doing the PMG Dance for 10 years now. And

I know it isnt ever going to get easier.

So put on your boxing gloves, girl.... and do it with a smile. And

remember that those normal families... are not in your shoes...and will

never have your perspective. Focus on improving your daughter's life.

Hugs. H.

raquandt@... wrote:

Dear ,

I totally " get " the envy part. My envy comes from parents who have

non-disabled kids. Having lived with andra's PMG diagnosis for over a

year now, my husband and I are still learning to separate our beautiful

girl from the kids that don't have special needs - especially the families

that " complain " that their kids are running all over the place. They seem

to have difficulty controlling their kids (no doesn't mean no in their

homes). To myself, I just roll my eyes thinking that if you actually

meant no when you said it and disciplined you wouldn't have these big huge

problems in your life. If you want problems, walk in my shoes baby.

In addition, I see so many children in homes that lack discipline, some

lacking love, some lacking attention. I wonder why " us " . We lavish these

things on her. (She's been biting and we've finally had to teach her the

word " no " - yeah!!!) We don't know why andra has PMG. Assumably, a

rare genetic fluke.

That said, material things are just that...material. I hope that you've

spent time getting signed up for all of the services your state offers. I

know in MN, we have a pretty good support structure for kids with

disabilities. We're in the process of getting andra her own social

worker to help us fight for services she could get for free. This could

include a free in-home assistant, speech device paid for, etc. Please do

all of your research to get the kind of help your family needs.

Hearing you!

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

" jhasselberger@... "

Sent by: polymicrogyria

07/12/2008 04:09 PM

Please respond to

polymicrogyria

To

polymicrogyria

cc

Subject

Guilty for my ENVY!! Anyone else experience this??

OK. Here it is, my confession of guilt for my envy. As I have

written...our son has bilateral diffuse PMG due to CMV

infection. He is non verbal, seizures, wheelchair, feeding fed etc.

We have a home that is by NO standards appropriate for a growing

disabled boy...but in this economy surviving is a struggle in itself.

I have met many many families in the disabled community lately, and

just recently... if anyone out there gets a magazine

called " Exceptional Parent " it features a family we know in CT who

built a fabulous new home for their disabled son. I heard through

the grapevine... " big settlement for CP due to birth trauma "

This is the 4th family I know that have a birth trauma baby, and are

now living in a wealthy and comfortable lifestyle. Huge homes, all

medical bills paid, elevators, pools, and one even has a mercedes

benz for Mom...because she " deserves it " .... and if you read the

article...and you live in tight quarters with a child who you only

WISH you had a pool to get him into... that envy creeps in.

Now...don't get me wrong...this is a lovely family...but I am so

jealous when I see people like this..because so far...all of them

have changed...and none of them keep in touch with any of

us " strugglers " any more.

Someone out there...just tell me...that my broken heart for how hard

it is for our family...and how much pain my back endures lifting

him...and how I have to work a part time job in the middle of the

night from home..just to keep the bills paid... is an ok feeling.

I keep looking at that article...it doesnt mention a lawsuit...but

the family was a struggling family before. Now they have everything

they need...and they glorified it in a magazine that many people

read...who can never afford to build a perfect home.... because we

do not have anyone to SUE. has PMG, and always

will...because I got sick...with a virus. His birth was normal.

Anyways...I have been praying this afternoon...to not feel

jealous..and it just isnt working. If you see the article...its the

July front cover...you'll see why.

Has anyone else out there encountered this?

Much love to all my fellow " stugglers " ,, Mom to , age

10, bilateral PMG

[Guest guest]

HAHAHA.... there it is right there... yes, you are expecting in November. duh.

was born in November, as was my first.... One other thing... I guess I

never looked for missed milestones in .....but interestingly, when he

didnt walk until 15 months...I didnt stress, Dr. said he's fine.... and the

first time he ever held and ate a cheerio I almost fell over with excitement.

Have an attitude of gratitude for the beauty of life.

People do not realize the depth and intensity of " reaching a milestone " until

they have lived a life of watching them never develop. I feel blessed by the

gifts of all of my children....and even more blessed by the special gifts

has taught us all.

And peeing on the toilet by himself... HOLY COW!!! THAT WAS AMAZING!!!

PLAYING WITH A TOY, SAYING WORDS, DIGGING IN THE MUD!!!!! I watched

everything that my 3rd baby did with a new-found amazement....and appreciation.

I can't wait for you to experience that too.... you are in for such a

wonderful journey... People told me I was " crazy " too... even my own

family... " OMG...what are you thinking!!! " Whatever. God has a plan for

you...and it is, what it is.

YEA FOR YOU AND YOUR HUSBAND!!!! CONGRATULATIONS!!!

raquandt@... wrote:

Hi and others,

I just wanted to share this with a group that may or may not " get it " .

We're expecting our second baby in November. Astonishingly, there have

been people who look at me with bewilderment when I tell them that we're

having another one? Some don't even say congratulations? I think they

are just trying to manage the shock and awe in their faces.

We planned on having 3. With andra's condition and my age (38) we're

stopping at two...although if you'd ask my husband we're still having

three. Yeah, right...

Anyway, I think there are a handful of people that either wouldn't risk

having another child with a disability or can't imagine trying to raise

more than one child when one has a disability. To put it in perspective,

most of the " shock " are on the faces of people with wealth. Where money

plays a pivitol role in who they are as people - how they define

themselves. It's weird and sad. All that money, yet clueless about what

life is really about.

Our reasoning for having a second is that we wanted andra to have a

sibling to tease and to tease her. We wanted one to help her as Mark and

I age and die. I, more than my husband, had to come to terms with the

fact that I could have another child with a disability before getting

pregnant. But, I've rarely let fear run my life and this wasn't the time

to start. I put my fear aside and did this for all three of us. We

expect to have another amazing child who will bring us the kind of joy

andra already has.

Rochelle

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

JULIE HASSELBERGER

Sent by: polymicrogyria

07/14/2008 11:23 AM

Please respond to

polymicrogyria

To

polymicrogyria

cc

Subject

Re: Guilty for my ENVY!! Anyone else experience this??

Thanks Rochelle... I know exactly what you mean about people with " normal "

children... but they will never be the same, and... after 10 1/2 years now

of fighting this fight... I find that I get more envious over people with

disabled children who have nothing...sue someone...and suddenly come into

enormous pools of money. They no longer have to fight, scream and advocate

to the point of exhaustion... huge homes, special equipment, private

nursing, pools, vacations.. not having to work...ever again.... yes..their

child is disabled too... and no..money doesnt buy happiness...but it sure

does buy freedom, time, and a better quality of life (if you do it right )

I have two other children, a 12 year old daughter, and a 7 year old

son... is our middle. So we are in both worlds...and the " normal

world " doesnt get it...they never will. I look at people sometimes and

wonder " why the heck are you worried about such a stupid thing as the PTA,

or local politics " When I am engaged in a 24/7 battle for life here.

But what you have to do... no matter how hard it is... is focus on what

you have...we have.. to be grateful for. Here is what gets... at no

cost.... and I am fighting for more:

ALL medical visits at 100%, all equipment at 100%, prescriptions at no

cost to us ( Beckett Model Waiver program/title 19)

In home nursing, at no cost, for 56 hours A WEEK. (that started in

2007...and it has litterally saved my life)...

He is in a NON Mainstreamed school, the town pays for it...they bus him

privately, and he gets 4 hours of PT, 4 hours of OT, special education,

adaptive assistance technology, speech therapy.

AT HOME physical therapy one time per week.

His lift van was paid for 100%... (these kids get heavy and need

wheelchairs)...

Tax exempt status for our town (due to the fact that the van is

handicapped)

All of his diapers, wipes, formula, enteral supplies, and medical supplies

are paid for 100% and shipped to me.

An $8000 SLEEP SAFE BED system was just delivered last week for him. WE

paid nothing.

A $600 a year grant for " respite services " from DMR. And a $2000 grant for

home renovations (yea....that didnt go far)

AND every penny out of our pocket for medical expenses is also a tax

deduction...talk to your accountant, if you medical expenses exceed 7% of

your gross income...you can deduct them. Ours always do...and its a much

better tax break than any FSA that employers offer.

I used to work... Now that is so much more involved, I can not

work.... we are battling for every single strand of hope to keep our

house.

So when I see the homes of the 4 families I know with birth trauma CP

babies... yes...they had to go through years of litigation.... but their

children have the best of the best...and there is no more fighting,....

But that is not our reality. In 's case, PMG was clearly caused by

CMV infection....and that is just the way it is. I guess knowing why it

happened helped, but who am going to sue... myself?? lol.

I guess the amazing thing is how much of a great fighter I have become.

And how my purpose in this life is clearly starting to reveal itself. And

is.... worth...every cent of the struggle.

I just wish I could have a rest.....at least once in a while... to ease

the stress. I'm 42....I've been doing the PMG Dance for 10 years now. And

I know it isnt ever going to get easier.

So put on your boxing gloves, girl.... and do it with a smile. And

remember that those normal families... are not in your shoes...and will

never have your perspective. Focus on improving your daughter's life.

Hugs. H.

raquandt@... wrote:

Dear ,

I totally " get " the envy part. My envy comes from parents who have

non-disabled kids. Having lived with andra's PMG diagnosis for over a

year now, my husband and I are still learning to separate our beautiful

girl from the kids that don't have special needs - especially the families

that " complain " that their kids are running all over the place. They seem

to have difficulty controlling their kids (no doesn't mean no in their

homes). To myself, I just roll my eyes thinking that if you actually

meant no when you said it and disciplined you wouldn't have these big huge

problems in your life. If you want problems, walk in my shoes baby.

In addition, I see so many children in homes that lack discipline, some

lacking love, some lacking attention. I wonder why " us " . We lavish these

things on her. (She's been biting and we've finally had to teach her the

word " no " - yeah!!!) We don't know why andra has PMG. Assumably, a

rare genetic fluke.

That said, material things are just that...material. I hope that you've

spent time getting signed up for all of the services your state offers. I

know in MN, we have a pretty good support structure for kids with

disabilities. We're in the process of getting andra her own social

worker to help us fight for services she could get for free. This could

include a free in-home assistant, speech device paid for, etc. Please do

all of your research to get the kind of help your family needs.

Hearing you!

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

" jhasselberger@... "

Sent by: polymicrogyria

07/12/2008 04:09 PM

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polymicrogyria

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Subject

Guilty for my ENVY!! Anyone else experience this??

OK. Here it is, my confession of guilt for my envy. As I have

written...our son has bilateral diffuse PMG due to CMV

infection. He is non verbal, seizures, wheelchair, feeding fed etc.

We have a home that is by NO standards appropriate for a growing

disabled boy...but in this economy surviving is a struggle in itself.

I have met many many families in the disabled community lately, and

just recently... if anyone out there gets a magazine

called " Exceptional Parent " it features a family we know in CT who

built a fabulous new home for their disabled son. I heard through

the grapevine... " big settlement for CP due to birth trauma "

This is the 4th family I know that have a birth trauma baby, and are

now living in a wealthy and comfortable lifestyle. Huge homes, all

medical bills paid, elevators, pools, and one even has a mercedes

benz for Mom...because she " deserves it " .... and if you read the

article...and you live in tight quarters with a child who you only

WISH you had a pool to get him into... that envy creeps in.

Now...don't get me wrong...this is a lovely family...but I am so

jealous when I see people like this..because so far...all of them

have changed...and none of them keep in touch with any of

us " strugglers " any more.

Someone out there...just tell me...that my broken heart for how hard

it is for our family...and how much pain my back endures lifting

him...and how I have to work a part time job in the middle of the

night from home..just to keep the bills paid... is an ok feeling.

I keep looking at that article...it doesnt mention a lawsuit...but

the family was a struggling family before. Now they have everything

they need...and they glorified it in a magazine that many people

read...who can never afford to build a perfect home.... because we

do not have anyone to SUE. has PMG, and always

will...because I got sick...with a virus. His birth was normal.

Anyways...I have been praying this afternoon...to not feel

jealous..and it just isnt working. If you see the article...its the

July front cover...you'll see why.

Has anyone else out there encountered this?

Much love to all my fellow " stugglers " ,, Mom to , age

10, bilateral PMG

[Guest guest]

,

Baby Q #2 is due November 24.

With andra, we had a level one ultrasound at 31 weeks pregnant. We

learned her ventricles were " on the large side of normal " . When she was 2

months old we had an ultrasound done of her brain and again heard " on the

large side of normal " but still " within normal " . When she didn't develop

normally I knew something was wrong. Upon a first visit to the

neurologist we were advised that an MRI would have a 50/50 shot at

detecting something. It wouldn't change anything in terms of her outcome.

WRONG. My husband and I pushed for the MRI and a month later got the PMG

diagnosis.

I have my 20 week appt with the OBGYN (usually I see a midwife) to discuss

whether we should do a level one versus level two and when. We're

scheduled to do a level one tomorrow but may not go through with it if

there is more to diagnose later with level two equipment.

Wish us luck!

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

JULIE HASSELBERGER

Sent by: polymicrogyria

07/14/2008 01:38 PM

Please respond to

polymicrogyria

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polymicrogyria

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Subject

Re: Guilty for my ENVY!! Anyone else experience this??

Dear Rochelle... our decision to have baby number 3, after having been

through so much with ...was one of love, and nurturing. And for me,

it gave a full circle of siblings... one older, one younger...and

somehow..we just said SO WHAT... lets do it. And God gave us ... he

was almost 12 pounds at birth...my little giant, so gentle, and so strong.

And has a brother, and a sister. I remember my psychologist at the

time, advising me that having a baby would be a healing experience for me

as well... since so much of 's first year was traumatic. And he was

right. used to lay on my big belly and feel his brother move... and

its a miracle. And I never ONCE thought about " what if this.. or " what if

that " ... it didnt matter. Somehow instinctively I knew was ok,

had been ok...but having an addition to our family..was beautiful.

So I wish the same for you all. Your daughter will be blessed, as you will

be. I would have another if my husband was on the same page about

that...but we are happy.

It all works out....when you choose to make it so. Are you expecting now??

I miss the baby years, it was so much more fun than puberty.

H.

raquandt@... wrote:

Hi and others,

I just wanted to share this with a group that may or may not " get it " .

We're expecting our second baby in November. Astonishingly, there have

been people who look at me with bewilderment when I tell them that we're

having another one? Some don't even say congratulations? I think they

are just trying to manage the shock and awe in their faces.

We planned on having 3. With andra's condition and my age (38) we're

stopping at two...although if you'd ask my husband we're still having

three. Yeah, right...

Anyway, I think there are a handful of people that either wouldn't risk

having another child with a disability or can't imagine trying to raise

more than one child when one has a disability. To put it in perspective,

most of the " shock " are on the faces of people with wealth. Where money

plays a pivitol role in who they are as people - how they define

themselves. It's weird and sad. All that money, yet clueless about what

life is really about.

Our reasoning for having a second is that we wanted andra to have a

sibling to tease and to tease her. We wanted one to help her as Mark and

I age and die. I, more than my husband, had to come to terms with the

fact that I could have another child with a disability before getting

pregnant. But, I've rarely let fear run my life and this wasn't the time

to start. I put my fear aside and did this for all three of us. We

expect to have another amazing child who will bring us the kind of joy

andra already has.

Rochelle

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

JULIE HASSELBERGER

Sent by: polymicrogyria

07/14/2008 11:23 AM

Please respond to

polymicrogyria

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polymicrogyria

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Subject

Re: Guilty for my ENVY!! Anyone else experience this??

Thanks Rochelle... I know exactly what you mean about people with " normal "

children... but they will never be the same, and... after 10 1/2 years now

of fighting this fight... I find that I get more envious over people with

disabled children who have nothing...sue someone...and suddenly come into

enormous pools of money. They no longer have to fight, scream and advocate

to the point of exhaustion... huge homes, special equipment, private

nursing, pools, vacations.. not having to work...ever again.... yes..their

child is disabled too... and no..money doesnt buy happiness...but it sure

does buy freedom, time, and a better quality of life (if you do it right )

I have two other children, a 12 year old daughter, and a 7 year old

son... is our middle. So we are in both worlds...and the " normal

world " doesnt get it...they never will. I look at people sometimes and

wonder " why the heck are you worried about such a stupid thing as the PTA,

or local politics " When I am engaged in a 24/7 battle for life here.

But what you have to do... no matter how hard it is... is focus on what

you have...we have.. to be grateful for. Here is what gets... at no

cost.... and I am fighting for more:

ALL medical visits at 100%, all equipment at 100%, prescriptions at no

cost to us ( Beckett Model Waiver program/title 19)

In home nursing, at no cost, for 56 hours A WEEK. (that started in

2007...and it has litterally saved my life)...

He is in a NON Mainstreamed school, the town pays for it...they bus him

privately, and he gets 4 hours of PT, 4 hours of OT, special education,

adaptive assistance technology, speech therapy.

AT HOME physical therapy one time per week.

His lift van was paid for 100%... (these kids get heavy and need

wheelchairs)...

Tax exempt status for our town (due to the fact that the van is

handicapped)

All of his diapers, wipes, formula, enteral supplies, and medical supplies

are paid for 100% and shipped to me.

An $8000 SLEEP SAFE BED system was just delivered last week for him. WE

paid nothing.

A $600 a year grant for " respite services " from DMR. And a $2000 grant for

home renovations (yea....that didnt go far)

AND every penny out of our pocket for medical expenses is also a tax

deduction...talk to your accountant, if you medical expenses exceed 7% of

your gross income...you can deduct them. Ours always do...and its a much

better tax break than any FSA that employers offer.

I used to work... Now that is so much more involved, I can not

work.... we are battling for every single strand of hope to keep our

house.

So when I see the homes of the 4 families I know with birth trauma CP

babies... yes...they had to go through years of litigation.... but their

children have the best of the best...and there is no more fighting,....

But that is not our reality. In 's case, PMG was clearly caused by

CMV infection....and that is just the way it is. I guess knowing why it

happened helped, but who am going to sue... myself?? lol.

I guess the amazing thing is how much of a great fighter I have become.

And how my purpose in this life is clearly starting to reveal itself. And

is.... worth...every cent of the struggle.

I just wish I could have a rest.....at least once in a while... to ease

the stress. I'm 42....I've been doing the PMG Dance for 10 years now. And

I know it isnt ever going to get easier.

So put on your boxing gloves, girl.... and do it with a smile. And

remember that those normal families... are not in your shoes...and will

never have your perspective. Focus on improving your daughter's life.

Hugs. H.

raquandt@... wrote:

Dear ,

I totally " get " the envy part. My envy comes from parents who have

non-disabled kids. Having lived with andra's PMG diagnosis for over a

year now, my husband and I are still learning to separate our beautiful

girl from the kids that don't have special needs - especially the families

that " complain " that their kids are running all over the place. They seem

to have difficulty controlling their kids (no doesn't mean no in their

homes). To myself, I just roll my eyes thinking that if you actually

meant no when you said it and disciplined you wouldn't have these big huge

problems in your life. If you want problems, walk in my shoes baby.

In addition, I see so many children in homes that lack discipline, some

lacking love, some lacking attention. I wonder why " us " . We lavish these

things on her. (She's been biting and we've finally had to teach her the

word " no " - yeah!!!) We don't know why andra has PMG. Assumably, a

rare genetic fluke.

That said, material things are just that...material. I hope that you've

spent time getting signed up for all of the services your state offers. I

know in MN, we have a pretty good support structure for kids with

disabilities. We're in the process of getting andra her own social

worker to help us fight for services she could get for free. This could

include a free in-home assistant, speech device paid for, etc. Please do

all of your research to get the kind of help your family needs.

Hearing you!

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandt@...

" jhasselberger@... "

Sent by: polymicrogyria

07/12/2008 04:09 PM

Please respond to

polymicrogyria

To

polymicrogyria

cc

Subject

Guilty for my ENVY!! Anyone else experience this??

OK. Here it is, my confession of guilt for my envy. As I have

written...our son has bilateral diffuse PMG due to CMV

infection. He is non verbal, seizures, wheelchair, feeding fed etc.

We have a home that is by NO standards appropriate for a growing

disabled boy...but in this economy surviving is a struggle in itself.

I have met many many families in the disabled community lately, and

just recently... if anyone out there gets a magazine

called " Exceptional Parent " it features a family we know in CT who

built a fabulous new home for their disabled son. I heard through

the grapevine... " big settlement for CP due to birth trauma "

This is the 4th family I know that have a birth trauma baby, and are

now living in a wealthy and comfortable lifestyle. Huge homes, all

medical bills paid, elevators, pools, and one even has a mercedes

benz for Mom...because she " deserves it " .... and if you read the

article...and you live in tight quarters with a child who you only

WISH you had a pool to get him into... that envy creeps in.

Now...don't get me wrong...this is a lovely family...but I am so

jealous when I see people like this..because so far...all of them

have changed...and none of them keep in touch with any of

us " strugglers " any more.

Someone out there...just tell me...that my broken heart for how hard

it is for our family...and how much pain my back endures lifting

him...and how I have to work a part time job in the middle of the

night from home..just to keep the bills paid... is an ok feeling.

I keep looking at that article...it doesnt mention a lawsuit...but

the family was a struggling family before. Now they have everything

they need...and they glorified it in a magazine that many people

read...who can never afford to build a perfect home.... because we

do not have anyone to SUE. has PMG, and always

will...because I got sick...with a virus. His birth was normal.

Anyways...I have been praying this afternoon...to not feel

jealous..and it just isnt working. If you see the article...its the

July front cover...you'll see why.

Has anyone else out there encountered this?

Much love to all my fellow " stugglers " ,, Mom to , age

10, bilateral PMG

[Guest guest]

We decided not to have anymore after Evan, it was mainly for financial reasons

but I wanted another one for a few reasons. #1 I had two boys and hoped I would

have a little girl, #2 a baby for Evan to have as a playmate and maybe an

inspiration #3 I felt that I was cheated out of experiencing all of those

milestones again because of Evan, I so wanted to experience a typical child

again.

 

But it was not to be. And now I am doing childcare for my brother's 3 month old

and it is hard so I think maybe it was a blessing that we did not have another,

I know I would be a lot more organized if it was my own, with a double stroller

etc. You should have seen me today at the store and the park, pushing Evan's

wheelchair and pulling the stroller with the baby in it behind me. And what was

even more amazing is that plenty of people stared but not once did anyone ask if

we needed help. Luckily I had my 7 1/2 year old and he pushed one or the other

for me. But he is a kid it is really not his job. He is happy to help though

which is good.

Mom 2 Evan Left Spastic Hemiplegia 3 1/2yrs old, 7yrs nda and SM

to 16yrs

www.justinichfamily.blogspot.com

Dear ,

I totally " get " the envy part. My envy comes from parents who have

non-disabled kids. Having lived with andra's PMG diagnosis for over a

year now, my husband and I are still learning to separate our beautiful

girl from the kids that don't have special needs - especially the families

that " complain " that their kids are running all over the place. They seem

to have difficulty controlling their kids (no doesn't mean no in their

homes). To myself, I just roll my eyes thinking that if you actually

meant no when you said it and disciplined you wouldn't have these big huge

problems in your life. If you want problems, walk in my shoes baby.

In addition, I see so many children in homes that lack discipline, some

lacking love, some lacking attention. I wonder why " us " . We lavish these

things on her. (She's been biting and we've finally had to teach her the

word " no " - yeah!!!) We don't know why andra has PMG. Assumably, a

rare genetic fluke.

That said, material things are just that...material. I hope that you've

spent time getting signed up for all of the services your state offers. I

know in MN, we have a pretty good support structure for kids with

disabilities. We're in the process of getting andra her own social

worker to help us fight for services she could get for free. This could

include a free in-home assistant, speech device paid for, etc. Please do

all of your research to get the kind of help your family needs.

Hearing you!

Rochelle A. Quandt

Senior Marketing Communications Administrator

Medical Division

3M Center, 275-4W-02

St. , MN 55144-1000

Tel:

Fax:

raquandtmmm (DOT) com

" jhasselberger@ snet.net " <jhasselberger@ snet.net>

Sent by: polymicrogyria@ yahoogroups. com

07/12/2008 04:09 PM

Please respond to

polymicrogyria@ yahoogroups. com

To

polymicrogyria@ yahoogroups. com

cc

Subject

Guilty for my ENVY!! Anyone else experience this??

OK. Here it is, my confession of guilt for my envy. As I have

written...our son has bilateral diffuse PMG due to CMV

infection. He is non verbal, seizures, wheelchair, feeding fed etc.

We have a home that is by NO standards appropriate for a growing

disabled boy...but in this economy surviving is a struggle in itself.

I have met many many families in the disabled community lately, and

just recently... if anyone out there gets a magazine

called " Exceptional Parent " it features a family we know in CT who

built a fabulous new home for their disabled son. I heard through

the grapevine... " big settlement for CP due to birth trauma "

This is the 4th family I know that have a birth trauma baby, and are

now living in a wealthy and comfortable lifestyle. Huge homes, all

medical bills paid, elevators, pools, and one even has a mercedes

benz for Mom...because she " deserves it " .... and if you read the

article...and you live in tight quarters with a child who you only

WISH you had a pool to get him into... that envy creeps in.

Now...don't get me wrong...this is a lovely family...but I am so

jealous when I see people like this..because so far...all of them

have changed...and none of them keep in touch with any of

us " strugglers " any more.

Someone out there...just tell me...that my broken heart for how hard

it is for our family...and how much pain my back endures lifting

him...and how I have to work a part time job in the middle of the

night from home..just to keep the bills paid... is an ok feeling.

I keep looking at that article...it doesnt mention a lawsuit...but

the family was a struggling family before. Now they have everything

they need...and they glorified it in a magazine that many people

read...who can never afford to build a perfect home.... because we

do not have anyone to SUE. has PMG, and always

will...because I got sick...with a virus. His birth was normal.

Anyways...I have been praying this afternoon... to not feel

jealous..and it just isnt working. If you see the article...its the

July front cover...you' ll see why.

Has anyone else out there encountered this?

Much love to all my fellow " stugglers " ,, Mom to , age

10, bilateral PMG

[Guest guest]

Rochelle,

Congratulations on baby #2! What a blessing!

I know your ultrasound will turn out great! Keep us posted....

Krista

> Dear ,

>

> I totally " get " the envy part. My envy comes from parents who have

> non-disabled kids. Having lived with andra's PMG diagnosis for

over a

> year now, my husband and I are still learning to separate our

beautiful

> girl from the kids that don't have special needs - especially the

families

>

>

> that " complain " that their kids are running all over the place.

They seem

> to have difficulty controlling their kids (no doesn't mean no in

their

> homes). To myself, I just roll my eyes thinking that if you

actually

> meant no when you said it and disciplined you wouldn't have these

big huge

>

>

> problems in your life. If you want problems, walk in my shoes baby.

>

> In addition, I see so many children in homes that lack discipline,

some

> lacking love, some lacking attention. I wonder why " us " . We lavish

these

> things on her. (She's been biting and we've finally had to teach

her the

> word " no " - yeah!!!) We don't know why andra has PMG.

Assumably, a

> rare genetic fluke.

>

> That said, material things are just that...material. I hope that

you've

> spent time getting signed up for all of the services your state

offers. I

> know in MN, we have a pretty good support structure for kids with

> disabilities. We're in the process of getting andra her own

social

> worker to help us fight for services she could get for free. This

could

> include a free in-home assistant, speech device paid for, etc.

Please do

> all of your research to get the kind of help your family needs.

>

> Hearing you!

>

> Rochelle A. Quandt

> Senior Marketing Communications Administrator

> Medical Division

> 3M Center, 275-4W-02

> St. , MN 55144-1000

> Tel:

> Fax:

> raquandt@...

>

> " jhasselberger@... "

> Sent by: polymicrogyria

> 07/12/2008 04:09 PM

> Please respond to

> polymicrogyria

>

> To

> polymicrogyria

> cc

>

> Subject

> Guilty for my ENVY!! Anyone else experience this??

>

> OK. Here it is, my confession of guilt for my envy. As I have

> written...our son has bilateral diffuse PMG due to CMV

> infection. He is non verbal, seizures, wheelchair, feeding fed etc.

>

> We have a home that is by NO standards appropriate for a growing

> disabled boy...but in this economy surviving is a struggle in

itself.

>

> I have met many many families in the disabled community lately, and

> just recently... if anyone out there gets a magazine

> called " Exceptional Parent " it features a family we know in CT who

> built a fabulous new home for their disabled son. I heard through

> the grapevine... " big settlement for CP due to birth trauma "

>

> This is the 4th family I know that have a birth trauma baby, and

are

> now living in a wealthy and comfortable lifestyle. Huge homes, all

> medical bills paid, elevators, pools, and one even has a mercedes

> benz for Mom...because she " deserves it " .... and if you read the

> article...and you live in tight quarters with a child who you only

> WISH you had a pool to get him into... that envy creeps in.

>

> Now...don't get me wrong...this is a lovely family...but I am so

> jealous when I see people like this..because so far...all of them

> have changed...and none of them keep in touch with any of

> us " strugglers " any more.

>

> Someone out there...just tell me...that my broken heart for how

hard

> it is for our family...and how much pain my back endures lifting

> him...and how I have to work a part time job in the middle of the

> night from home..just to keep the bills paid... is an ok feeling.

>

> I keep looking at that article...it doesnt mention a lawsuit...but

> the family was a struggling family before. Now they have everything

> they need...and they glorified it in a magazine that many people

> read...who can never afford to build a perfect home.... because we

> do not have anyone to SUE. has PMG, and always

> will...because I got sick...with a virus. His birth was normal.

>

> Anyways...I have been praying this afternoon...to not feel

> jealous..and it just isnt working. If you see the article...its the

> July front cover...you'll see why.

>

> Has anyone else out there encountered this?

>

> Much love to all my fellow " stugglers " ,, Mom to , age

> 10, bilateral PMG

>

>

[Guest guest]

Reading your posts makes me realise how lucky we are here in the UK. The NHS

provides all medication and feeds and treatments albeit within restraints of

waiting lists, and social services provide equipment and adaptations such as

lifts track hoists and hospital type bed. We still live in an ordinary house

though......a mansion and pool would be nice!

Dom

Guilty for my ENVY!! Anyone else experience this??

To: polymicrogyria

Date: Saturday, July 12, 2008, 5:09 PM

OK. Here it is, my confession of guilt for my envy. As I have

written...our son has bilateral diffuse PMG due to CMV

infection. He is non verbal, seizures, wheelchair, feeding fed etc.

We have a home that is by NO standards appropriate for a growing

disabled boy...but in this economy surviving is a struggle in itself.

I have met many many families in the disabled community lately, and

just recently... if anyone out there gets a magazine

called " Exceptional Parent " it features a family we know in CT who

built a fabulous new home for their disabled son. I heard through

the grapevine... " big settlement for CP due to birth trauma "

This is the 4th family I know that have a birth trauma baby, and are

now living in a wealthy and comfortable lifestyle. Huge homes, all

medical bills paid, elevators, pools, and one even has a mercedes

benz for Mom...because she " deserves it " .... and if you read the

article...and you live in tight quarters with a child who you only

WISH you had a pool to get him into... that envy creeps in.

Now...don't get me wrong...this is a lovely family...but I am so

jealous when I see people like this..because so far...all of them

have changed...and none of them keep in touch with any of

us " strugglers " any more.

Someone out there...just tell me...that my broken heart for how hard

it is for our family...and how much pain my back endures lifting

him...and how I have to work a part time job in the middle of the

night from home..just to keep the bills paid... is an ok feeling.

I keep looking at that article...it doesnt mention a lawsuit...but

the family was a struggling family before. Now they have everything

they need...and they glorified it in a magazine that many people

read...who can never afford to build a perfect home.... because we

do not have anyone to SUE. has PMG, and always

will...because I got sick...with a virus. His birth was normal.

Anyways...I have been praying this afternoon... to not feel

jealous..and it just isnt working. If you see the article...its the

July front cover...you' ll see why.

Has anyone else out there encountered this?

Much love to all my fellow " stugglers " ,, Mom to , age

10, bilateral PMG

[Guest guest]

I hear you! A mansion, a pool, the financial freedom to never have to work

again, the trips to swim with dolphins, a second home on the Florida coast, a

van with all the needed adapaptations along with unlimited cash for gas... the

choice of any doctor or clinic in the world.. and one Mom I know got her own

settlement,Dad got his, and the child also got his. They are all now living

free from financial pressures... and of course, we no longer hear from them.

We have to try and understand our own life, and make the best of it. We

also get our medications, doctors, equipment, nursing care, respite money,

lifts, and tax breaks...but you have to be really smart and know how to fight

and work through the difficult system know as red tape. Once you do...and you

figure out where the help is... it is there.

I would just love a little break from the 24/7 stress and exhaustion...and

time for my sore back and aching muscles to heal...just alittle...from having to

lift and change daily.

Otherwise, its not so bad.

Chloe B wrote:

Reading your posts makes me realise how lucky we are here in the UK.

The NHS provides all medication and feeds and treatments albeit within

restraints of waiting lists, and social services provide equipment and

adaptations such as lifts track hoists and hospital type bed. We still live in

an ordinary house though......a mansion and pool would be nice!

Dom

Guilty for my ENVY!! Anyone else experience this??

To: polymicrogyria

Date: Saturday, July 12, 2008, 5:09 PM

OK. Here it is, my confession of guilt for my envy. As I have

written...our son has bilateral diffuse PMG due to CMV

infection. He is non verbal, seizures, wheelchair, feeding fed etc.

We have a home that is by NO standards appropriate for a growing

disabled boy...but in this economy surviving is a struggle in itself.

I have met many many families in the disabled community lately, and

just recently... if anyone out there gets a magazine

called " Exceptional Parent " it features a family we know in CT who

built a fabulous new home for their disabled son. I heard through

the grapevine... " big settlement for CP due to birth trauma "

This is the 4th family I know that have a birth trauma baby, and are

now living in a wealthy and comfortable lifestyle. Huge homes, all

medical bills paid, elevators, pools, and one even has a mercedes

benz for Mom...because she " deserves it " .... and if you read the

article...and you live in tight quarters with a child who you only

WISH you had a pool to get him into... that envy creeps in.

Now...don't get me wrong...this is a lovely family...but I am so

jealous when I see people like this..because so far...all of them

have changed...and none of them keep in touch with any of

us " strugglers " any more.

Someone out there...just tell me...that my broken heart for how hard

it is for our family...and how much pain my back endures lifting

him...and how I have to work a part time job in the middle of the

night from home..just to keep the bills paid... is an ok feeling.

I keep looking at that article...it doesnt mention a lawsuit...but

the family was a struggling family before. Now they have everything

they need...and they glorified it in a magazine that many people

read...who can never afford to build a perfect home.... because we

do not have anyone to SUE. has PMG, and always

will...because I got sick...with a virus. His birth was normal.

Anyways...I have been praying this afternoon... to not feel

jealous..and it just isnt working. If you see the article...its the

July front cover...you' ll see why.

Has anyone else out there encountered this?

Much love to all my fellow " stugglers " ,, Mom to , age

10, bilateral PMG