Our Families Ride on the Disability Roller Coaster

[Guest guest]

Hi, everyone! This is an article I wrote for the Hearing and Vision

Connections winter newsletter. I do trainings for HVC about CHARGE and this

is a synopsis of one of my trainings.

The following article appeared in Hearing & Visions Connections Newsletter,

Winter 2006, Vol. 23. The entire newsletter can be viewed at:

http://www.morgan.k12.il.us/isd/hvc/resources/newsletters.aspx

Enjoy this talented Mom's story.

Our Family's Ride on the

CHARGE Roller Coaster

By Michele Westmaas, mother of Aubrie and

HVC consultant/trainer.

The familiar essay, " Welcome to

Holland " , likens having a child with a disability to

landing in Holland unexpectedly after planning a

trip and boarding a flight to Italy. Eight years

ago, we found our plane landing in

CHARGEland. What a roller coaster ride our

journey has been!

To begin with, we had no prior warning of

problems. My pregnancy was typical. We knew

we were having a girl, we delighted in the

anticipation of her arrival, we painted her room

pink, and we named her Aubrie. But things didn't

go as planned. She was born with " dysmorphic

facial features " - our first clue that there was a

genetic syndrome causing the multitude of

problems we would uncover over the coming

months and years.

Aubrie was hospitalized for several weeks

over the Christmas holiday season, which made

life very difficult for her older kindergartener

brother. His mom went to the hospital to have his

sister and didn't come home for weeks. When she

did come home, she was distraught, tired, stressed

out, and consumed with his sister's care.

I felt like life would never be " ok " again.

When I met people who said that their children

with disabilities were angels in their lives and that

it would all turn out to be a blessing, I thought

surely they were kidding themselves. And I

wouldn't let them kid me. There's no way it

could be ok for a baby to not eat or see or hear.

I felt like there was no light at the end of

the tunnel. I was exhausted and stressed beyond

anything I'd ever experienced. But in time I did

see light at the end of the tunnel. It turns out the

tunnel has lots of curves and bends so you can't

see that light until you round a few corners. And

it turns out that my daughter and CHARGE have

been blessings and that life is " ok " .

For me, knowledge is power. I turned to

the Internet for information and support,

connecting with other families through the

CHARGE listserve. We joined the CHARGE

Foundation, got the CHARGE Manual, and we

have attended every CHARGE Conference since

Aubrie was born. By connecting with others,

we've learned about the complexities of

CHARGE and have been able to make reasonably

informed decisions about her medical and

educational needs.

The local pastor gave me unforgettable

words of advice. He said, " Allow your friends to

help you. Give them the gift of being able to do

something for you. " Rather than have my friends

silently worrying and feeling helpless to do

anything, I could ask them for help and allow

them to be a part of things. My friends helped in

so many ways and their support has been hugely

important to our family.

" The Crystal Ball Dilemma " is a huge

source of anxiety for families. Will my child ever

speak? Eat? Run and play? Have friends? Go to

prom? Ride a bike? Drive a car? Others will say

that you never know even with a typical child

what the future will bring. But really with a

typical child you can reasonably expect certain

givens. With a child with significant disabilities,

suddenly there are no givens. It's like walking a

path into constant fog never knowing what is

ahead unsettling to say the least.

We were blessed to meet a young woman

with diagnoses very similar to Aubrie. On paper,

they are as alike as two people with CHARGE

can be. We call them " twins thirteen years

removed " . Meeting that young woman finally

gave us a vision of Aubrie's future. What could

we reasonably expect? What do we need to do

now to support her growth as an adult? Finally

the fog has lifted and we can see the future.

Meeting the other families at our first

CHARGE Conference was an unexpected

emotional jolt for me. I entered the huge banquet

room for the evening welcome reception for

families. There were hundreds of people: parents

who were lovely, competent and smart; siblings

laughing, playing, and enjoying themselves;

children and adults with CHARGE surrounded by

those who loved them. I returned to my hotel

room and sobbed. I hadn't realized the inner guilt

I'd been feeling as if I was to blame for not

growing this baby successfully as if I were no

longer a valuable person because I'd failed as a

mom. But meeting all those families showed me

that I was ok just as they were ok and that my

family and my child would be ok. What a relief

from anxiety I hadn't even acknowledged

previously.

Since then we've had more ups and

downs. There have been difficult medical

decisions and educational battles. Sometimes it

seems that we must have 2 faces. I have a t-shirt

with a picture of a witch. Half of her face is a

beautiful witch and half is a mean, ugly witch.

Underneath it says, " Good witch, bad witch.

Hey, I'm flexible! " This is how I often feel when

advocating for my daughter. Each day I awake

and shine the spotlight on the good parts of our

life. And truly, much of it is good now. But there

are other parts the fears, anxiety, and weariness

that I keep in the dark corners. On occasion, as

advocates for our children, we must shine the

light on the dark corners and share the worst parts

of our reality in order to get services, medical

support, etc. It's an uncomfortable switch, but

one that we learn to make swiftly in order to

survive.

As I write this, our family is still glowing

from a unique opportunity to meet Wolfgang

Puck an invitation that came out of Aubrie's

charm and her fanatical interest in cooking and

the Food Network. But we're also preparing for

surgery tomorrow; a surgery that comes after

years of talking with specialist and our CHARGE

family, suggesting a new direction, changing

doctors, and traveling 3 hours one way for

appointments. The highs are high, the lows are

low. and the roller coaster never stops.

YOU CAN MEET MICHELE

January 11, 2007

" Disability Roller Coaster: One Family's Ride "

Presented by Michele Westmaas

At Lincoln Christian Church

For more details go to HVC webite at

www.morgan.k12.il.us/isd/hvc

[Guest guest]

Wonderful Michele - thank you for sharing - one for the archives!

>

> Hi, everyone! This is an article I wrote for the Hearing and Vision

> Connections winter newsletter. I do trainings for HVC about CHARGE and

> this

> is a synopsis of one of my trainings.

>

> The following article appeared in Hearing & Visions Connections

> Newsletter,

> Winter 2006, Vol. 23. The entire newsletter can be viewed at:

> http://www.morgan.k12.il.us/isd/hvc/resources/newsletters.aspx

>

> Enjoy this talented Mom's story.

>

> Our Family's Ride on the

> CHARGE Roller Coaster

>

> By Michele Westmaas, mother of Aubrie and

> HVC consultant/trainer.

>

> The familiar essay, " Welcome to

> Holland " , likens having a child with a disability to

> landing in Holland unexpectedly after planning a

> trip and boarding a flight to Italy. Eight years

> ago, we found our plane landing in

> CHARGEland. What a roller coaster ride our

> journey has been!

>

> To begin with, we had no prior warning of

> problems. My pregnancy was typical. We knew

> we were having a girl, we delighted in the

> anticipation of her arrival, we painted her room

> pink, and we named her Aubrie. But things didn't

> go as planned. She was born with " dysmorphic

> facial features " - our first clue that there was a

> genetic syndrome causing the multitude of

> problems we would uncover over the coming

> months and years.

>

> Aubrie was hospitalized for several weeks

> over the Christmas holiday season, which made

> life very difficult for her older kindergartener

> brother. His mom went to the hospital to have his

> sister and didn't come home for weeks. When she

> did come home, she was distraught, tired, stressed

> out, and consumed with his sister's care.

> I felt like life would never be " ok " again.

>

> When I met people who said that their children

> with disabilities were angels in their lives and that

> it would all turn out to be a blessing, I thought

> surely they were kidding themselves. And I

> wouldn't let them kid me. There's no way it

> could be ok for a baby to not eat or see or hear.

> I felt like there was no light at the end of

> the tunnel. I was exhausted and stressed beyond

> anything I'd ever experienced. But in time I did

> see light at the end of the tunnel. It turns out the

> tunnel has lots of curves and bends so you can't

> see that light until you round a few corners. And

> it turns out that my daughter and CHARGE have

> been blessings and that life is " ok " .

>

> For me, knowledge is power. I turned to

> the Internet for information and support,

> connecting with other families through the

> CHARGE listserve. We joined the CHARGE

> Foundation, got the CHARGE Manual, and we

> have attended every CHARGE Conference since

> Aubrie was born. By connecting with others,

> we've learned about the complexities of

> CHARGE and have been able to make reasonably

> informed decisions about her medical and

> educational needs.

>

> The local pastor gave me unforgettable

> words of advice. He said, " Allow your friends to

> help you. Give them the gift of being able to do

> something for you. " Rather than have my friends

> silently worrying and feeling helpless to do

> anything, I could ask them for help and allow

> them to be a part of things. My friends helped in

> so many ways and their support has been hugely

> important to our family.

>

> " The Crystal Ball Dilemma " is a huge

> source of anxiety for families. Will my child ever

> speak? Eat? Run and play? Have friends? Go to

> prom? Ride a bike? Drive a car? Others will say

> that you never know even with a typical child

> what the future will bring. But really with a

> typical child you can reasonably expect certain

> givens. With a child with significant disabilities,

> suddenly there are no givens. It's like walking a

> path into constant fog never knowing what is

> ahead unsettling to say the least.

>

> We were blessed to meet a young woman

> with diagnoses very similar to Aubrie. On paper,

> they are as alike as two people with CHARGE

> can be. We call them " twins thirteen years

> removed " . Meeting that young woman finally

> gave us a vision of Aubrie's future. What could

> we reasonably expect? What do we need to do

> now to support her growth as an adult? Finally

> the fog has lifted and we can see the future.

> Meeting the other families at our first

> CHARGE Conference was an unexpected

> emotional jolt for me. I entered the huge banquet

> room for the evening welcome reception for

> families. There were hundreds of people: parents

> who were lovely, competent and smart; siblings

> laughing, playing, and enjoying themselves;

> children and adults with CHARGE surrounded by

> those who loved them. I returned to my hotel

> room and sobbed. I hadn't realized the inner guilt

> I'd been feeling as if I was to blame for not

> growing this baby successfully as if I were no

> longer a valuable person because I'd failed as a

> mom. But meeting all those families showed me

> that I was ok just as they were ok and that my

> family and my child would be ok. What a relief

> from anxiety I hadn't even acknowledged

> previously.

>

> Since then we've had more ups and

> downs. There have been difficult medical

> decisions and educational battles. Sometimes it

> seems that we must have 2 faces. I have a t-shirt

> with a picture of a witch. Half of her face is a

> beautiful witch and half is a mean, ugly witch.

> Underneath it says, " Good witch, bad witch.

> Hey, I'm flexible! " This is how I often feel when

> advocating for my daughter. Each day I awake

> and shine the spotlight on the good parts of our

> life. And truly, much of it is good now. But there

> are other parts the fears, anxiety, and weariness

> that I keep in the dark corners. On occasion, as

> advocates for our children, we must shine the

> light on the dark corners and share the worst parts

> of our reality in order to get services, medical

> support, etc. It's an uncomfortable switch, but

> one that we learn to make swiftly in order to

> survive.

>

> As I write this, our family is still glowing

> from a unique opportunity to meet Wolfgang

> Puck an invitation that came out of Aubrie's

> charm and her fanatical interest in cooking and

> the Food Network. But we're also preparing for

> surgery tomorrow; a surgery that comes after

> years of talking with specialist and our CHARGE

> family, suggesting a new direction, changing

> doctors, and traveling 3 hours one way for

> appointments. The highs are high, the lows are

> low. and the roller coaster never stops.

>

> YOU CAN MEET MICHELE

>

> January 11, 2007

>

> " Disability Roller Coaster: One Family's Ride "

> Presented by Michele Westmaas

> At Lincoln Christian Church

> For more details go to HVC webite at

> www.morgan.k12.il.us/isd/hvc

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

wow!!! how wonderful!!! you are an inspriation!!

maria

Our Families Ride on the Disability Roller Coaster

Hi, everyone! This is an article I wrote for the Hearing and Vision

Connections winter newsletter. I do trainings for HVC about CHARGE and this

is a synopsis of one of my trainings.

The following article appeared in Hearing & Visions Connections Newsletter,

Winter 2006, Vol. 23. The entire newsletter can be viewed at:

http://www.morgan.k12.il.us/isd/hvc/resources/newsletters.aspx

Enjoy this talented Mom's story.

Our Family's Ride on the

CHARGE Roller Coaster

By Michele Westmaas, mother of Aubrie and

HVC consultant/trainer.

The familiar essay, " Welcome to

Holland " , likens having a child with a disability to

landing in Holland unexpectedly after planning a

trip and boarding a flight to Italy. Eight years

ago, we found our plane landing in

CHARGEland. What a roller coaster ride our

journey has been!

To begin with, we had no prior warning of

problems. My pregnancy was typical. We knew

we were having a girl, we delighted in the

anticipation of her arrival, we painted her room

pink, and we named her Aubrie. But things didn't

go as planned. She was born with " dysmorphic

facial features " - our first clue that there was a

genetic syndrome causing the multitude of

problems we would uncover over the coming

months and years.

Aubrie was hospitalized for several weeks

over the Christmas holiday season, which made

life very difficult for her older kindergartener

brother. His mom went to the hospital to have his

sister and didn't come home for weeks. When she

did come home, she was distraught, tired, stressed

out, and consumed with his sister's care.

I felt like life would never be " ok " again.

When I met people who said that their children

with disabilities were angels in their lives and that

it would all turn out to be a blessing, I thought

surely they were kidding themselves. And I

wouldn't let them kid me. There's no way it

could be ok for a baby to not eat or see or hear.

I felt like there was no light at the end of

the tunnel. I was exhausted and stressed beyond

anything I'd ever experienced. But in time I did

see light at the end of the tunnel. It turns out the

tunnel has lots of curves and bends so you can't

see that light until you round a few corners. And

it turns out that my daughter and CHARGE have

been blessings and that life is " ok " .

For me, knowledge is power. I turned to

the Internet for information and support,

connecting with other families through the

CHARGE listserve. We joined the CHARGE

Foundation, got the CHARGE Manual, and we

have attended every CHARGE Conference since

Aubrie was born. By connecting with others,

we've learned about the complexities of

CHARGE and have been able to make reasonably

informed decisions about her medical and

educational needs.

The local pastor gave me unforgettable

words of advice. He said, " Allow your friends to

help you. Give them the gift of being able to do

something for you. " Rather than have my friends

silently worrying and feeling helpless to do

anything, I could ask them for help and allow

them to be a part of things. My friends helped in

so many ways and their support has been hugely

important to our family.

" The Crystal Ball Dilemma " is a huge

source of anxiety for families. Will my child ever

speak? Eat? Run and play? Have friends? Go to

prom? Ride a bike? Drive a car? Others will say

that you never know even with a typical child

what the future will bring. But really with a

typical child you can reasonably expect certain

givens. With a child with significant disabilities,

suddenly there are no givens. It's like walking a

path into constant fog never knowing what is

ahead unsettling to say the least.

We were blessed to meet a young woman

with diagnoses very similar to Aubrie. On paper,

they are as alike as two people with CHARGE

can be. We call them " twins thirteen years

removed " . Meeting that young woman finally

gave us a vision of Aubrie's future. What could

we reasonably expect? What do we need to do

now to support her growth as an adult? Finally

the fog has lifted and we can see the future.

Meeting the other families at our first

CHARGE Conference was an unexpected

emotional jolt for me. I entered the huge banquet

room for the evening welcome reception for

families. There were hundreds of people: parents

who were lovely, competent and smart; siblings

laughing, playing, and enjoying themselves;

children and adults with CHARGE surrounded by

those who loved them. I returned to my hotel

room and sobbed. I hadn't realized the inner guilt

I'd been feeling as if I was to blame for not

growing this baby successfully as if I were no

longer a valuable person because I'd failed as a

mom. But meeting all those families showed me

that I was ok just as they were ok and that my

family and my child would be ok. What a relief

from anxiety I hadn't even acknowledged

previously.

Since then we've had more ups and

downs. There have been difficult medical

decisions and educational battles. Sometimes it

seems that we must have 2 faces. I have a t-shirt

with a picture of a witch. Half of her face is a

beautiful witch and half is a mean, ugly witch.

Underneath it says, " Good witch, bad witch.

Hey, I'm flexible! " This is how I often feel when

advocating for my daughter. Each day I awake

and shine the spotlight on the good parts of our

life. And truly, much of it is good now. But there

are other parts the fears, anxiety, and weariness

that I keep in the dark corners. On occasion, as

advocates for our children, we must shine the

light on the dark corners and share the worst parts

of our reality in order to get services, medical

support, etc. It's an uncomfortable switch, but

one that we learn to make swiftly in order to

survive.

As I write this, our family is still glowing

from a unique opportunity to meet Wolfgang

Puck an invitation that came out of Aubrie's

charm and her fanatical interest in cooking and

the Food Network. But we're also preparing for

surgery tomorrow; a surgery that comes after

years of talking with specialist and our CHARGE

family, suggesting a new direction, changing

doctors, and traveling 3 hours one way for

appointments. The highs are high, the lows are

low. and the roller coaster never stops.

YOU CAN MEET MICHELE

January 11, 2007

" Disability Roller Coaster: One Family's Ride "

Presented by Michele Westmaas

At Lincoln Christian Church

For more details go to HVC webite at

www.morgan.k12.il.us/isd/hvc

[Guest guest]

-

We are all an inspiration to each other!!

Michele

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

PATRICK HALLORAN

Sent: Thursday, December 21, 2006 3:20 PM

To: CHARGE

Subject: Re: Our Families Ride on the Disability Roller Coaster

wow!!! how wonderful!!! you are an inspriation!!

maria

[Guest guest]

Michele,

One word - WOW! Think you could have been describing each of our

rollercoaster journeys. Thank you for sharing.

Flo (UK)

Mum to - CHARGE - (6) and Elly (4)

[Guest guest]

Flo-

That's the idea - to share a peak into what we feel as parents. Isn't an

amazing feeling when you realize you are not alone?? Every parent needs to

have that confirmation. And wouldn't it help professionals to support us if

they could understand a bit of what it's like to be in our shoes? Is my

story true for everyone? No. But I know from my time here on the list that

it's similar for many others. When I do this as a presentation, I share

much of the insight gained over the years with you guys! Actually, none of

that insight (into my own feelings or others') would happen without the

conversations here to bring it out.

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Flo Njeru

Sent: Thursday, December 21, 2006 6:13 PM

To: CHARGE

Subject: Re: Our Families Ride on the Disability Roller Coaster

Michele,

One word - WOW! Think you could have been describing each of our

rollercoaster journeys. Thank you for sharing.

Flo (UK)

Mum to - CHARGE - (6) and Elly (4)

[Guest guest]

Michele,

You write such great stories and I think you are also a great

speaker. I loved that I was able to meet you last March, you have

taught me so much!!

Thanks for sharing,

Crystal mom to (10), (3), and Eva (20 month old CHARGEr)

wife to Dan in Illinois

>

> Hi, everyone! This is an article I wrote for the Hearing and

Vision

> Connections winter newsletter. I do trainings for HVC about

CHARGE and this

> is a synopsis of one of my trainings.

>

> The following article appeared in Hearing & Visions Connections

Newsletter,

> Winter 2006, Vol. 23. The entire newsletter can be viewed at:

> http://www.morgan.k12.il.us/isd/hvc/resources/newsletters.aspx

>

> Enjoy this talented Mom's story.

>

> Our Family's Ride on the

> CHARGE Roller Coaster

>

> By Michele Westmaas, mother of Aubrie and

> HVC consultant/trainer.

>

> The familiar essay, " Welcome to

> Holland " , likens having a child with a disability to

> landing in Holland unexpectedly after planning a

> trip and boarding a flight to Italy. Eight years

> ago, we found our plane landing in

> CHARGEland. What a roller coaster ride our

> journey has been!

>

> To begin with, we had no prior warning of

> problems. My pregnancy was typical. We knew

> we were having a girl, we delighted in the

> anticipation of her arrival, we painted her room

> pink, and we named her Aubrie. But things didn't

> go as planned. She was born with " dysmorphic

> facial features " - our first clue that there was a

> genetic syndrome causing the multitude of

> problems we would uncover over the coming

> months and years.

>

> Aubrie was hospitalized for several weeks

> over the Christmas holiday season, which made

> life very difficult for her older kindergartener

> brother. His mom went to the hospital to have his

> sister and didn't come home for weeks. When she

> did come home, she was distraught, tired, stressed

> out, and consumed with his sister's care.

> I felt like life would never be " ok " again.

>

> When I met people who said that their children

> with disabilities were angels in their lives and that

> it would all turn out to be a blessing, I thought

> surely they were kidding themselves. And I

> wouldn't let them kid me. There's no way it

> could be ok for a baby to not eat or see or hear.

> I felt like there was no light at the end of

> the tunnel. I was exhausted and stressed beyond

> anything I'd ever experienced. But in time I did

> see light at the end of the tunnel. It turns out the

> tunnel has lots of curves and bends so you can't

> see that light until you round a few corners. And

> it turns out that my daughter and CHARGE have

> been blessings and that life is " ok " .

>

> For me, knowledge is power. I turned to

> the Internet for information and support,

> connecting with other families through the

> CHARGE listserve. We joined the CHARGE

> Foundation, got the CHARGE Manual, and we

> have attended every CHARGE Conference since

> Aubrie was born. By connecting with others,

> we've learned about the complexities of

> CHARGE and have been able to make reasonably

> informed decisions about her medical and

> educational needs.

>

> The local pastor gave me unforgettable

> words of advice. He said, " Allow your friends to

> help you. Give them the gift of being able to do

> something for you. " Rather than have my friends

> silently worrying and feeling helpless to do

> anything, I could ask them for help and allow

> them to be a part of things. My friends helped in

> so many ways and their support has been hugely

> important to our family.

>

> " The Crystal Ball Dilemma " is a huge

> source of anxiety for families. Will my child ever

> speak? Eat? Run and play? Have friends? Go to

> prom? Ride a bike? Drive a car? Others will say

> that you never know even with a typical child

> what the future will bring. But really with a

> typical child you can reasonably expect certain

> givens. With a child with significant disabilities,

> suddenly there are no givens. It's like walking a

> path into constant fog never knowing what is

> ahead unsettling to say the least.

>

> We were blessed to meet a young woman

> with diagnoses very similar to Aubrie. On paper,

> they are as alike as two people with CHARGE

> can be. We call them " twins thirteen years

> removed " . Meeting that young woman finally

> gave us a vision of Aubrie's future. What could

> we reasonably expect? What do we need to do

> now to support her growth as an adult? Finally

> the fog has lifted and we can see the future.

> Meeting the other families at our first

> CHARGE Conference was an unexpected

> emotional jolt for me. I entered the huge banquet

> room for the evening welcome reception for

> families. There were hundreds of people: parents

> who were lovely, competent and smart; siblings

> laughing, playing, and enjoying themselves;

> children and adults with CHARGE surrounded by

> those who loved them. I returned to my hotel

> room and sobbed. I hadn't realized the inner guilt

> I'd been feeling as if I was to blame for not

> growing this baby successfully as if I were no

> longer a valuable person because I'd failed as a

> mom. But meeting all those families showed me

> that I was ok just as they were ok and that my

> family and my child would be ok. What a relief

> from anxiety I hadn't even acknowledged

> previously.

>

> Since then we've had more ups and

> downs. There have been difficult medical

> decisions and educational battles. Sometimes it

> seems that we must have 2 faces. I have a t-shirt

> with a picture of a witch. Half of her face is a

> beautiful witch and half is a mean, ugly witch.

> Underneath it says, " Good witch, bad witch.

> Hey, I'm flexible! " This is how I often feel when

> advocating for my daughter. Each day I awake

> and shine the spotlight on the good parts of our

> life. And truly, much of it is good now. But there

> are other parts the fears, anxiety, and weariness

> that I keep in the dark corners. On occasion, as

> advocates for our children, we must shine the

> light on the dark corners and share the worst parts

> of our reality in order to get services, medical

> support, etc. It's an uncomfortable switch, but

> one that we learn to make swiftly in order to

> survive.

>

> As I write this, our family is still glowing

> from a unique opportunity to meet Wolfgang

> Puck an invitation that came out of Aubrie's

> charm and her fanatical interest in cooking and

> the Food Network. But we're also preparing for

> surgery tomorrow; a surgery that comes after

> years of talking with specialist and our CHARGE

> family, suggesting a new direction, changing

> doctors, and traveling 3 hours one way for

> appointments. The highs are high, the lows are

> low. and the roller coaster never stops.

>

>

> YOU CAN MEET MICHELE

>

> January 11, 2007

>

> " Disability Roller Coaster: One Family's Ride "

> Presented by Michele Westmaas

> At Lincoln Christian Church

> For more details go to HVC webite at

> www.morgan.k12.il.us/isd/hvc

>

[Guest guest]

Crystal-

Thanks so much for the kind words!

Merry Christmas- -

Michele

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

supermama95

Sent: Thursday, December 21, 2006 8:25 PM

To: CHARGE

Subject: Re: Our Families Ride on the Disability Roller Coaster

Michele,

You write such great stories and I think you are also a great

speaker. I loved that I was able to meet you last March, you have

taught me so much!!

Thanks for sharing,

Crystal mom to (10), (3), and Eva (20 month old CHARGEr)

wife to Dan in Illinois

>

> Hi, everyone! This is an article I wrote for the Hearing and

Vision

> Connections winter newsletter. I do trainings for HVC about

CHARGE and this

> is a synopsis of one of my trainings.

>

> The following article appeared in Hearing & Visions Connections

Newsletter,

> Winter 2006, Vol. 23. The entire newsletter can be viewed at:

> http://www.morgan.

<http://www.morgan.k12.il.us/isd/hvc/resources/newsletters.aspx>

k12.il.us/isd/hvc/resources/newsletters.aspx

>

> Enjoy this talented Mom's story.

>

> Our Family's Ride on the

> CHARGE Roller Coaster

>

> By Michele Westmaas, mother of Aubrie and

> HVC consultant/trainer.

>

> The familiar essay, " Welcome to

> Holland " , likens having a child with a disability to

> landing in Holland unexpectedly after planning a

> trip and boarding a flight to Italy. Eight years

> ago, we found our plane landing in

> CHARGEland. What a roller coaster ride our

> journey has been!

>

> To begin with, we had no prior warning of

> problems. My pregnancy was typical. We knew

> we were having a girl, we delighted in the

> anticipation of her arrival, we painted her room

> pink, and we named her Aubrie. But things didn't

> go as planned. She was born with " dysmorphic

> facial features " - our first clue that there was a

> genetic syndrome causing the multitude of

> problems we would uncover over the coming

> months and years.

>

> Aubrie was hospitalized for several weeks

> over the Christmas holiday season, which made

> life very difficult for her older kindergartener

> brother. His mom went to the hospital to have his

> sister and didn't come home for weeks. When she

> did come home, she was distraught, tired, stressed

> out, and consumed with his sister's care.

> I felt like life would never be " ok " again.

>

> When I met people who said that their children

> with disabilities were angels in their lives and that

> it would all turn out to be a blessing, I thought

> surely they were kidding themselves. And I

> wouldn't let them kid me. There's no way it

> could be ok for a baby to not eat or see or hear.

> I felt like there was no light at the end of

> the tunnel. I was exhausted and stressed beyond

> anything I'd ever experienced. But in time I did

> see light at the end of the tunnel. It turns out the

> tunnel has lots of curves and bends so you can't

> see that light until you round a few corners. And

> it turns out that my daughter and CHARGE have

> been blessings and that life is " ok " .

>

> For me, knowledge is power. I turned to

> the Internet for information and support,

> connecting with other families through the

> CHARGE listserve. We joined the CHARGE

> Foundation, got the CHARGE Manual, and we

> have attended every CHARGE Conference since

> Aubrie was born. By connecting with others,

> we've learned about the complexities of

> CHARGE and have been able to make reasonably

> informed decisions about her medical and

> educational needs.

>

> The local pastor gave me unforgettable

> words of advice. He said, " Allow your friends to

> help you. Give them the gift of being able to do

> something for you. " Rather than have my friends

> silently worrying and feeling helpless to do

> anything, I could ask them for help and allow

> them to be a part of things. My friends helped in

> so many ways and their support has been hugely

> important to our family.

>

> " The Crystal Ball Dilemma " is a huge

> source of anxiety for families. Will my child ever

> speak? Eat? Run and play? Have friends? Go to

> prom? Ride a bike? Drive a car? Others will say

> that you never know even with a typical child

> what the future will bring. But really with a

> typical child you can reasonably expect certain

> givens. With a child with significant disabilities,

> suddenly there are no givens. It's like walking a

> path into constant fog never knowing what is

> ahead unsettling to say the least.

>

> We were blessed to meet a young woman

> with diagnoses very similar to Aubrie. On paper,

> they are as alike as two people with CHARGE

> can be. We call them " twins thirteen years

> removed " . Meeting that young woman finally

> gave us a vision of Aubrie's future. What could

> we reasonably expect? What do we need to do

> now to support her growth as an adult? Finally

> the fog has lifted and we can see the future.

> Meeting the other families at our first

> CHARGE Conference was an unexpected

> emotional jolt for me. I entered the huge banquet

> room for the evening welcome reception for

> families. There were hundreds of people: parents

> who were lovely, competent and smart; siblings

> laughing, playing, and enjoying themselves;

> children and adults with CHARGE surrounded by

> those who loved them. I returned to my hotel

> room and sobbed. I hadn't realized the inner guilt

> I'd been feeling as if I was to blame for not

> growing this baby successfully as if I were no

> longer a valuable person because I'd failed as a

> mom. But meeting all those families showed me

> that I was ok just as they were ok and that my

> family and my child would be ok. What a relief

> from anxiety I hadn't even acknowledged

> previously.

>

> Since then we've had more ups and

> downs. There have been difficult medical

> decisions and educational battles. Sometimes it

> seems that we must have 2 faces. I have a t-shirt

> with a picture of a witch. Half of her face is a

> beautiful witch and half is a mean, ugly witch.

> Underneath it says, " Good witch, bad witch.

> Hey, I'm flexible! " This is how I often feel when

> advocating for my daughter. Each day I awake

> and shine the spotlight on the good parts of our

> life. And truly, much of it is good now. But there

> are other parts the fears, anxiety, and weariness

> that I keep in the dark corners. On occasion, as

> advocates for our children, we must shine the

> light on the dark corners and share the worst parts

> of our reality in order to get services, medical

> support, etc. It's an uncomfortable switch, but

> one that we learn to make swiftly in order to

> survive.

>

> As I write this, our family is still glowing

> from a unique opportunity to meet Wolfgang

> Puck an invitation that came out of Aubrie's

> charm and her fanatical interest in cooking and

> the Food Network. But we're also preparing for

> surgery tomorrow; a surgery that comes after

> years of talking with specialist and our CHARGE

> family, suggesting a new direction, changing

> doctors, and traveling 3 hours one way for

> appointments. The highs are high, the lows are

> low. and the roller coaster never stops.

>

>

> YOU CAN MEET MICHELE

>

> January 11, 2007

>

> " Disability Roller Coaster: One Family's Ride "

> Presented by Michele Westmaas

> At Lincoln Christian Church

> For more details go to HVC webite at

> www.morgan.k12.il.us/isd/hvc

>

[Guest guest]

Michele,

what a tremendous article!!!

Thanks for letting us see it (and your talents).

xo

pam

Our Families Ride on the Disability Roller Coaster

Hi, everyone! This is an article I wrote for the Hearing and Vision

Connections winter newsletter. I do trainings for HVC about CHARGE and this

is a synopsis of one of my trainings.

The following article appeared in Hearing & Visions Connections Newsletter,

Winter 2006, Vol. 23. The entire newsletter can be viewed at:

http://www.morgan.k12.il.us/isd/hvc/resources/newsletters.aspx

Enjoy this talented Mom's story.

Our Family's Ride on the

CHARGE Roller Coaster

By Michele Westmaas, mother of Aubrie and

HVC consultant/trainer.

The familiar essay, " Welcome to

Holland " , likens having a child with a disability to

landing in Holland unexpectedly after planning a

trip and boarding a flight to Italy. Eight years

ago, we found our plane landing in

CHARGEland. What a roller coaster ride our

journey has been!

To begin with, we had no prior warning of

problems. My pregnancy was typical. We knew

we were having a girl, we delighted in the

anticipation of her arrival, we painted her room

pink, and we named her Aubrie. But things didn't

go as planned. She was born with " dysmorphic

facial features " - our first clue that there was a

genetic syndrome causing the multitude of

problems we would uncover over the coming

months and years.

Aubrie was hospitalized for several weeks

over the Christmas holiday season, which made

life very difficult for her older kindergartener

brother. His mom went to the hospital to have his

sister and didn't come home for weeks. When she

did come home, she was distraught, tired, stressed

out, and consumed with his sister's care.

I felt like life would never be " ok " again.

When I met people who said that their children

with disabilities were angels in their lives and that

it would all turn out to be a blessing, I thought

surely they were kidding themselves. And I

wouldn't let them kid me. There's no way it

could be ok for a baby to not eat or see or hear.

I felt like there was no light at the end of

the tunnel. I was exhausted and stressed beyond

anything I'd ever experienced. But in time I did

see light at the end of the tunnel. It turns out the

tunnel has lots of curves and bends so you can't

see that light until you round a few corners. And

it turns out that my daughter and CHARGE have

been blessings and that life is " ok " .

For me, knowledge is power. I turned to

the Internet for information and support,

connecting with other families through the

CHARGE listserve. We joined the CHARGE

Foundation, got the CHARGE Manual, and we

have attended every CHARGE Conference since

Aubrie was born. By connecting with others,

we've learned about the complexities of

CHARGE and have been able to make reasonably

informed decisions about her medical and

educational needs.

The local pastor gave me unforgettable

words of advice. He said, " Allow your friends to

help you. Give them the gift of being able to do

something for you. " Rather than have my friends

silently worrying and feeling helpless to do

anything, I could ask them for help and allow

them to be a part of things. My friends helped in

so many ways and their support has been hugely

important to our family.

" The Crystal Ball Dilemma " is a huge

source of anxiety for families. Will my child ever

speak? Eat? Run and play? Have friends? Go to

prom? Ride a bike? Drive a car? Others will say

that you never know even with a typical child

what the future will bring. But really with a

typical child you can reasonably expect certain

givens. With a child with significant disabilities,

suddenly there are no givens. It's like walking a

path into constant fog never knowing what is

ahead unsettling to say the least.

We were blessed to meet a young woman

with diagnoses very similar to Aubrie. On paper,

they are as alike as two people with CHARGE

can be. We call them " twins thirteen years

removed " . Meeting that young woman finally

gave us a vision of Aubrie's future. What could

we reasonably expect? What do we need to do

now to support her growth as an adult? Finally

the fog has lifted and we can see the future.

Meeting the other families at our first

CHARGE Conference was an unexpected

emotional jolt for me. I entered the huge banquet

room for the evening welcome reception for

families. There were hundreds of people: parents

who were lovely, competent and smart; siblings

laughing, playing, and enjoying themselves;

children and adults with CHARGE surrounded by

those who loved them. I returned to my hotel

room and sobbed. I hadn't realized the inner guilt

I'd been feeling as if I was to blame for not

growing this baby successfully as if I were no

longer a valuable person because I'd failed as a

mom. But meeting all those families showed me

that I was ok just as they were ok and that my

family and my child would be ok. What a relief

from anxiety I hadn't even acknowledged

previously.

Since then we've had more ups and

downs. There have been difficult medical

decisions and educational battles. Sometimes it

seems that we must have 2 faces. I have a t-shirt

with a picture of a witch. Half of her face is a

beautiful witch and half is a mean, ugly witch.

Underneath it says, " Good witch, bad witch.

Hey, I'm flexible! " This is how I often feel when

advocating for my daughter. Each day I awake

and shine the spotlight on the good parts of our

life. And truly, much of it is good now. But there

are other parts the fears, anxiety, and weariness

that I keep in the dark corners. On occasion, as

advocates for our children, we must shine the

light on the dark corners and share the worst parts

of our reality in order to get services, medical

support, etc. It's an uncomfortable switch, but

one that we learn to make swiftly in order to

survive.

As I write this, our family is still glowing

from a unique opportunity to meet Wolfgang

Puck an invitation that came out of Aubrie's

charm and her fanatical interest in cooking and

the Food Network. But we're also preparing for

surgery tomorrow; a surgery that comes after

years of talking with specialist and our CHARGE

family, suggesting a new direction, changing

doctors, and traveling 3 hours one way for

appointments. The highs are high, the lows are

low. and the roller coaster never stops.

YOU CAN MEET MICHELE

January 11, 2007

" Disability Roller Coaster: One Family's Ride "

Presented by Michele Westmaas

At Lincoln Christian Church

For more details go to HVC webite at

www.morgan.k12.il.us/isd/hvc

[Guest guest]

k can i coem meet u buy me a ticket pls

>

> Michele,

> what a tremendous article!!!

> Thanks for letting us see it (and your talents).

> xo

> pam

>

> Our Families Ride on the Disability Roller Coaster

>

> Hi, everyone! This is an article I wrote for the Hearing and Vision

> Connections winter newsletter. I do trainings for HVC about CHARGE and

> this

> is a synopsis of one of my trainings.

>

> The following article appeared in Hearing & Visions Connections

> Newsletter,

> Winter 2006, Vol. 23. The entire newsletter can be viewed at:

> http://www.morgan.k12.il.us/isd/hvc/resources/newsletters.aspx

>

> Enjoy this talented Mom's story.

>

> Our Family's Ride on the

> CHARGE Roller Coaster

>

> By Michele Westmaas, mother of Aubrie and

> HVC consultant/trainer.

>

> The familiar essay, " Welcome to

> Holland " , likens having a child with a disability to

> landing in Holland unexpectedly after planning a

> trip and boarding a flight to Italy. Eight years

> ago, we found our plane landing in

> CHARGEland. What a roller coaster ride our

> journey has been!

>

> To begin with, we had no prior warning of

> problems. My pregnancy was typical. We knew

> we were having a girl, we delighted in the

> anticipation of her arrival, we painted her room

> pink, and we named her Aubrie. But things didn't

> go as planned. She was born with " dysmorphic

> facial features " - our first clue that there was a

> genetic syndrome causing the multitude of

> problems we would uncover over the coming

> months and years.

>

> Aubrie was hospitalized for several weeks

> over the Christmas holiday season, which made

> life very difficult for her older kindergartener

> brother. His mom went to the hospital to have his

> sister and didn't come home for weeks. When she

> did come home, she was distraught, tired, stressed

> out, and consumed with his sister's care.

> I felt like life would never be " ok " again.

>

> When I met people who said that their children

> with disabilities were angels in their lives and that

> it would all turn out to be a blessing, I thought

> surely they were kidding themselves. And I

> wouldn't let them kid me. There's no way it

> could be ok for a baby to not eat or see or hear.

> I felt like there was no light at the end of

> the tunnel. I was exhausted and stressed beyond

> anything I'd ever experienced. But in time I did

> see light at the end of the tunnel. It turns out the

> tunnel has lots of curves and bends so you can't

> see that light until you round a few corners. And

> it turns out that my daughter and CHARGE have

> been blessings and that life is " ok " .

>

> For me, knowledge is power. I turned to

> the Internet for information and support,

> connecting with other families through the

> CHARGE listserve. We joined the CHARGE

> Foundation, got the CHARGE Manual, and we

> have attended every CHARGE Conference since

> Aubrie was born. By connecting with others,

> we've learned about the complexities of

> CHARGE and have been able to make reasonably

> informed decisions about her medical and

> educational needs.

>

> The local pastor gave me unforgettable

> words of advice. He said, " Allow your friends to

> help you. Give them the gift of being able to do

> something for you. " Rather than have my friends

> silently worrying and feeling helpless to do

> anything, I could ask them for help and allow

> them to be a part of things. My friends helped in

> so many ways and their support has been hugely

> important to our family.

>

> " The Crystal Ball Dilemma " is a huge

> source of anxiety for families. Will my child ever

> speak? Eat? Run and play? Have friends? Go to

> prom? Ride a bike? Drive a car? Others will say

> that you never know even with a typical child

> what the future will bring. But really with a

> typical child you can reasonably expect certain

> givens. With a child with significant disabilities,

> suddenly there are no givens. It's like walking a

> path into constant fog never knowing what is

> ahead unsettling to say the least.

>

> We were blessed to meet a young woman

> with diagnoses very similar to Aubrie. On paper,

> they are as alike as two people with CHARGE

> can be. We call them " twins thirteen years

> removed " . Meeting that young woman finally

> gave us a vision of Aubrie's future. What could

> we reasonably expect? What do we need to do

> now to support her growth as an adult? Finally

> the fog has lifted and we can see the future.

> Meeting the other families at our first

> CHARGE Conference was an unexpected

> emotional jolt for me. I entered the huge banquet

> room for the evening welcome reception for

> families. There were hundreds of people: parents

> who were lovely, competent and smart; siblings

> laughing, playing, and enjoying themselves;

> children and adults with CHARGE surrounded by

> those who loved them. I returned to my hotel

> room and sobbed. I hadn't realized the inner guilt

> I'd been feeling as if I was to blame for not

> growing this baby successfully as if I were no

> longer a valuable person because I'd failed as a

> mom. But meeting all those families showed me

> that I was ok just as they were ok and that my

> family and my child would be ok. What a relief

> from anxiety I hadn't even acknowledged

> previously.

>

> Since then we've had more ups and

> downs. There have been difficult medical

> decisions and educational battles. Sometimes it

> seems that we must have 2 faces. I have a t-shirt

> with a picture of a witch. Half of her face is a

> beautiful witch and half is a mean, ugly witch.

> Underneath it says, " Good witch, bad witch.

> Hey, I'm flexible! " This is how I often feel when

> advocating for my daughter. Each day I awake

> and shine the spotlight on the good parts of our

> life. And truly, much of it is good now. But there

> are other parts the fears, anxiety, and weariness

> that I keep in the dark corners. On occasion, as

> advocates for our children, we must shine the

> light on the dark corners and share the worst parts

> of our reality in order to get services, medical

> support, etc. It's an uncomfortable switch, but

> one that we learn to make swiftly in order to

> survive.

>

> As I write this, our family is still glowing

> from a unique opportunity to meet Wolfgang

> Puck an invitation that came out of Aubrie's

> charm and her fanatical interest in cooking and

> the Food Network. But we're also preparing for

> surgery tomorrow; a surgery that comes after

> years of talking with specialist and our CHARGE

> family, suggesting a new direction, changing

> doctors, and traveling 3 hours one way for

> appointments. The highs are high, the lows are

> low. and the roller coaster never stops.

>

> YOU CAN MEET MICHELE

>

> January 11, 2007

>

> " Disability Roller Coaster: One Family's Ride "

> Presented by Michele Westmaas

> At Lincoln Christian Church

> For more details go to HVC webite at

> www.morgan.k12.il.us/isd/hvc

>

>

[Guest guest]

Pam-

Who else would I share it with if not you guys??? Without this list

keeping my sanity and clarifying my thoughts, I wouldn't be writing

anything!

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

pamela.ryan@...

Sent: Thursday, December 21, 2006 10:38 PM

To: CHARGE

Subject: RE: Our Families Ride on the Disability Roller Coaster

Michele,

what a tremendous article!!!

Thanks for letting us see it (and your talents).

xo

pam

[Guest guest]

What a nice article, Michele! You truly have a gift for words. It's great that

you are using those talents to share with and help others.

, mom to (4)

http://kauffmanlak.blogspot.com/

__________________________________________________