Our CHARGERs have made us SPECIAL

[Guest guest]

Dear CHARGE Family,

I don't post very often anymore, life is hectic and it's hard to

find the time these days. By the time I do get around to reading

someone's post, someone else has usually answered with a very eloquent

reply. But know that I am here, quietly involved, and lovingly concerned

for each of you. I would like to take a minute to extend a welcome all

the new members of our ever growing family. I've been cleaning out some

of my files and came across this piece. I shared it with the list about

3 years ago. I thought with so many new members, they too, might enjoy

reading it. Hopefully the rest of you will enjoy reading it again, as I

did.

Smiles from,

Baker - Mom to Jeff (20 yrs. next month-CHARGEr), Steve (21 yrs.

returning next month from serving a two year Mission in Brazil), and

others married with children of their own.

Idaho, USA

To You, My Sisters

Many of you I have never even met face to face, but

I've searched you out every day. I've looked for you

on the internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well

worn. You are stronger than you ever wanted to be.

Your words ring experience, experience you culled with

your very heart and soul. You are compassionate beyond

the expectations of this world. You are my " sisters. "

Yes, you and I, my friend, are sisters in a sorority.

A very elite sorority. We are special. Just like any

other sorority, we were chosen to be members. Some of

us were invited to join immediately, some not for

months or even years. Some of us even tried to refuse

membership, but to no avail.

We were initiated in neurologist's offices and NICU

units, in obstetrician's offices, in emergency rooms,

and during ultrasounds. We were initiated with somber

telephone calls, consultations, evaluations, blood

tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things

were fine. We were pregnant, or we had just given

birth, or we were nursing our newborn, or we were

playing with our toddler. Yes, one minute everything

was fine. Then, whether it happened in an instant, as

it often does, or over the course of a few weeks or

months, our entire lives changed. Something wasn't

quite right. Then we found ourselves mothers of

children with special needs.

We are united, we sisters, regardless of the diversity

of our children's special needs. Some of our children

undergo chemotherapy. Some need respirators and

ventilators. Some are unable to talk, some are unable

to walk. Some eat through feeding tubes. Some live in

a different world. We do not discriminate against

those mothers whose children's needs are not as

" special " as our child's. We have mutual respect and

empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with

whatever materials we could find. We know " the "

specialists in the field. We know " the " neurologists,

" the " hospitals, " the " wonder drugs, " the " treatments.

We know " the " tests that need to be done, we know

" the " degenerative and progressive diseases and we

hold our breath while our children are tested for

them. Without formal education, we could become board

certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school

boards to get what our children need to survive, and

to flourish. We have prevailed upon the State to

include augmentative communication devices in special

education classes and mainstream schools for our

children with cerebral palsy. We have labored to prove

to insurance companies the medical necessity of gait

trainers and other adaptive equipment for our children

with spinal cord defects. We have sued municipalities

to have our children properly classified so they could

receive education and evaluation commensurate with

their diagnosis.

We have learned to deal with the rest of the world,

even if that means walking away from it. We have

tolerated scorn in supermarkets during " tantrums " and

gritted our teeth while discipline was advocated by

the person behind us on line. We have tolerated inane

suggestions and home remedies from well-meaning

strangers. We have tolerated mothers of children

without special needs complaining about chicken pox

and ear infections. We have learned that many of our

closest friends can't understand what it's like to be

in our sorority, and don't even want to try.

We have our own personal copies of Perl

Kingsley's " A Trip To Holland " and Erma Bombeck's " The

Special Mother. " We keep them by our bedside and read

and reread them during our toughest hours.

We have coped with holidays. We have found ways to get

our physically handicapped children to the neighbors'

front doors on Halloween, and we have found ways to

help our deaf children form the words, " trick or

treat. " We have accepted that our children with

sensory dysfunction will never wear velvet or lace on

Christmas. We have painted a canvas of lights and a

blazing Yule log with our words for our blind

children. We have pureed turkey on Thanksgiving. We

have bought white chocolate bunnies for Easter. And

all the while, we have tried to create a festive

atmosphere for the rest of our family.

We've gotten up every morning since our journey began

wondering how we'd make it through another day, and

gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and

sip red wine in Italy. We've mourned the fact that our

trip to Holland has required much more baggage than we

ever imagined when we first visited the travel agent.

And we've mourned because we left for the airport

without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never

stop believing. Our love for our special children and

our belief in all that they will achieve in life knows

no bounds. We dream of them scoring touchdowns and

extra points and home runs. We visualize them running

sprints and marathons. We dream of them planting

vegetable seeds, riding horses and chopping down

trees. We hear their angelic voices singing Christmas

carols. We see their palettes smeared with

watercolors, and their fingers flying over ivory keys

in a concert hall. We are amazed at the grace of their

pirouettes. We never, never stop believing in all they

will accomplish as they pass through this world.

But in the meantime, my sisters, the most important

thing we do, is hold tight to their little hands as

together, we special mothers and our special children,

reach for the stars.

By Maureen K. Higgins

________________________________________________________________

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[Guest guest]

-

I don't recall your first posting of that -- but it is Fantastic!! It

is so true that I search out others who have the same understanding of

the world. I have found it in others who have faced tragedy, loss,

illness -- loss of a child, life-threatening illness, etc. There are

other sororities that share a sisterhood with us. It's a common instant

bond when you meet someone who " understands " .

Michele W

[Guest guest]

-

I don't recall your first posting of that -- but it is Fantastic!! It

is so true that I search out others who have the same understanding of

the world. I have found it in others who have faced tragedy, loss,

illness -- loss of a child, life-threatening illness, etc. There are

other sororities that share a sisterhood with us. It's a common instant

bond when you meet someone who " understands " .

Michele W

[Guest guest]

-

I don't recall your first posting of that -- but it is Fantastic!! It

is so true that I search out others who have the same understanding of

the world. I have found it in others who have faced tragedy, loss,

illness -- loss of a child, life-threatening illness, etc. There are

other sororities that share a sisterhood with us. It's a common instant

bond when you meet someone who " understands " .

Michele W

[Guest guest]

Funny you would post this now. I was cleaning out a box of old

papers about a week ago and I found a printed copy of this from the

first time it was posted on here and just gave it to two of my

friends one of which has a son with CP and another who's son has

Auditory Processing Disorder. Even rereading it now brings tears to

my eyes. It is so true that only the other people who have been in

our shoes know what we go through everyday. Thanks for posting this

again.

Kim

mom to Devin 13 yrs. and Saleah 6 yrs (CHARGE)

> Dear CHARGE Family,

> I don't post very often anymore, life is hectic and it's hard

to

> find the time these days. By the time I do get around to reading

> someone's post, someone else has usually answered with a very

eloquent

> reply. But know that I am here, quietly involved, and lovingly

concerned

> for each of you. I would like to take a minute to extend a

welcome all

> the new members of our ever growing family. I've been cleaning

out some

> of my files and came across this piece. I shared it with the list

about

> 3 years ago. I thought with so many new members, they too, might

enjoy

> reading it. Hopefully the rest of you will enjoy reading it

again, as I

> did.

>

> Smiles from,

> Baker - Mom to Jeff (20 yrs. next month-CHARGEr), Steve (21

yrs.

> returning next month from serving a two year Mission in Brazil),

and

> others married with children of their own.

> Idaho, USA

>

>

> To You, My Sisters

>

> Many of you I have never even met face to face, but

> I've searched you out every day. I've looked for you

> on the internet, on playgrounds and in grocery stores.

> I've become an expert at identifying you. You are well

> worn. You are stronger than you ever wanted to be.

> Your words ring experience, experience you culled with

> your very heart and soul. You are compassionate beyond

> the expectations of this world. You are my " sisters. "

>

> Yes, you and I, my friend, are sisters in a sorority.

> A very elite sorority. We are special. Just like any

> other sorority, we were chosen to be members. Some of

> us were invited to join immediately, some not for

> months or even years. Some of us even tried to refuse

> membership, but to no avail.

>

> We were initiated in neurologist's offices and NICU

> units, in obstetrician's offices, in emergency rooms,

> and during ultrasounds. We were initiated with somber

> telephone calls, consultations, evaluations, blood

> tests, x-rays, MRI films, and heart surgeries.

>

> All of us have one thing in common. One day things

> were fine. We were pregnant, or we had just given

> birth, or we were nursing our newborn, or we were

> playing with our toddler. Yes, one minute everything

> was fine. Then, whether it happened in an instant, as

> it often does, or over the course of a few weeks or

> months, our entire lives changed. Something wasn't

> quite right. Then we found ourselves mothers of

> children with special needs.

>

> We are united, we sisters, regardless of the diversity

> of our children's special needs. Some of our children

> undergo chemotherapy. Some need respirators and

> ventilators. Some are unable to talk, some are unable

> to walk. Some eat through feeding tubes. Some live in

> a different world. We do not discriminate against

> those mothers whose children's needs are not as

> " special " as our child's. We have mutual respect and

> empathy for all the women who walk in our shoes.

>

> We are knowledgeable. We have educated ourselves with

> whatever materials we could find. We know " the "

> specialists in the field. We know " the " neurologists,

> " the " hospitals, " the " wonder drugs, " the " treatments.

> We know " the " tests that need to be done, we know

> " the " degenerative and progressive diseases and we

> hold our breath while our children are tested for

> them. Without formal education, we could become board

> certified in neurology, endocrinology, and physiatry.

>

> We have taken on our insurance companies and school

> boards to get what our children need to survive, and

> to flourish. We have prevailed upon the State to

> include augmentative communication devices in special

> education classes and mainstream schools for our

> children with cerebral palsy. We have labored to prove

> to insurance companies the medical necessity of gait

> trainers and other adaptive equipment for our children

> with spinal cord defects. We have sued municipalities

> to have our children properly classified so they could

> receive education and evaluation commensurate with

> their diagnosis.

>

> We have learned to deal with the rest of the world,

> even if that means walking away from it. We have

> tolerated scorn in supermarkets during " tantrums " and

> gritted our teeth while discipline was advocated by

> the person behind us on line. We have tolerated inane

> suggestions and home remedies from well-meaning

> strangers. We have tolerated mothers of children

> without special needs complaining about chicken pox

> and ear infections. We have learned that many of our

> closest friends can't understand what it's like to be

> in our sorority, and don't even want to try.

>

> We have our own personal copies of Perl

> Kingsley's " A Trip To Holland " and Erma Bombeck's " The

> Special Mother. " We keep them by our bedside and read

> and reread them during our toughest hours.

>

> We have coped with holidays. We have found ways to get

> our physically handicapped children to the neighbors'

> front doors on Halloween, and we have found ways to

> help our deaf children form the words, " trick or

> treat. " We have accepted that our children with

> sensory dysfunction will never wear velvet or lace on

> Christmas. We have painted a canvas of lights and a

> blazing Yule log with our words for our blind

> children. We have pureed turkey on Thanksgiving. We

> have bought white chocolate bunnies for Easter. And

> all the while, we have tried to create a festive

> atmosphere for the rest of our family.

>

> We've gotten up every morning since our journey began

> wondering how we'd make it through another day, and

> gone to bed every evening not sure how we did it.

>

> We've mourned the fact that we never got to relax and

> sip red wine in Italy. We've mourned the fact that our

> trip to Holland has required much more baggage than we

> ever imagined when we first visited the travel agent.

> And we've mourned because we left for the airport

> without most of the things we needed for the trip.

>

> But we, sisters, we keep the faith always. We never

> stop believing. Our love for our special children and

> our belief in all that they will achieve in life knows

> no bounds. We dream of them scoring touchdowns and

> extra points and home runs. We visualize them running

> sprints and marathons. We dream of them planting

> vegetable seeds, riding horses and chopping down

> trees. We hear their angelic voices singing Christmas

> carols. We see their palettes smeared with

> watercolors, and their fingers flying over ivory keys

> in a concert hall. We are amazed at the grace of their

> pirouettes. We never, never stop believing in all they

> will accomplish as they pass through this world.

>

> But in the meantime, my sisters, the most important

> thing we do, is hold tight to their little hands as

> together, we special mothers and our special children,

> reach for the stars.

>

> By Maureen K. Higgins

>

>

> ________________________________________________________________

> The best thing to hit the Internet in years - Juno SpeedBand!

> Surf the Web up to FIVE TIMES FASTER!

> Only $14.95/ month - visit www.juno.com to sign up today!