Re: Re: Erma Bombeck on mothers of disabled children....

[Guest guest]

Chantelle,

I am so sorry to have upset you. I look at each child as a gift. I'm not

only mom to a CHARGEr, but also have a 2 1/2 month old son AND am steppie

(stepmom) to Brent 9 and 6. My heart broke when I read your email.

Your emails have been so helpful in the information you have given. You are

a great encouragement to me because right now, I don't know where my 2 year

old is going in life or what we will face, but I do know he can make it!!! I

know this because you are making it and you show that. The love and kindness

and HUGE heart you have shows through on all your emails. Maybe your parents

thought of you as a punishment, but I think of you as a blessing and

encouragement not only to those of us parents who have CHARGErs and children

with other

disabilitis, but to other CHARGErs as well.

I am also a special education teacher and ASL interpreter/teacher of the

deaf. Yes, some parents/caretakers few their children as curses and

punishments.

Honestly, I don't know why--yes, it can be hard. If I had my way, I would

take their " blessings " from them. God gives us children to love, nurture and

teach. The teaching goes both ways. We can all learn from each other.

When Tanis was born and then taken to the Children's Hospital an hour away, I

was shocked. But the only things I could think of were would he live until I

saw him again and how in the world was I going to raise this child. I asked

so many questions I thought the doctors were going to throw me out of the

hospital. But they knew I wanted my baby and I love him. I am more terrified

of

caring for his new baby brother than I am for Tanis. I don't know anything

about " normal " babies. Denny already weighs 13 pounds and Tanis only weighs 26.

I am truly sorry I upset you. Please forgive me. Regardless of the opinion

of your parents and their treatment of you, you have turned out to be a

wonderful, loving, caring person who only cares about others and helping

everyone.

Every time I read one of your emails, I get a smile or I'm concerned if you

are doing well. You bring that out in everyone on this site. I am sure that

any one of the moms on this page will tell you that you are their adopted

daughter.

Carolyn

Mother of Tanis 2 CHARGE and Denny almost 3 months

[Guest guest]

Chantelle,

I am so sorry to have upset you. I look at each child as a gift. I'm not

only mom to a CHARGEr, but also have a 2 1/2 month old son AND am steppie

(stepmom) to Brent 9 and 6. My heart broke when I read your email.

Your emails have been so helpful in the information you have given. You are

a great encouragement to me because right now, I don't know where my 2 year

old is going in life or what we will face, but I do know he can make it!!! I

know this because you are making it and you show that. The love and kindness

and HUGE heart you have shows through on all your emails. Maybe your parents

thought of you as a punishment, but I think of you as a blessing and

encouragement not only to those of us parents who have CHARGErs and children

with other

disabilitis, but to other CHARGErs as well.

I am also a special education teacher and ASL interpreter/teacher of the

deaf. Yes, some parents/caretakers few their children as curses and

punishments.

Honestly, I don't know why--yes, it can be hard. If I had my way, I would

take their " blessings " from them. God gives us children to love, nurture and

teach. The teaching goes both ways. We can all learn from each other.

When Tanis was born and then taken to the Children's Hospital an hour away, I

was shocked. But the only things I could think of were would he live until I

saw him again and how in the world was I going to raise this child. I asked

so many questions I thought the doctors were going to throw me out of the

hospital. But they knew I wanted my baby and I love him. I am more terrified

of

caring for his new baby brother than I am for Tanis. I don't know anything

about " normal " babies. Denny already weighs 13 pounds and Tanis only weighs 26.

I am truly sorry I upset you. Please forgive me. Regardless of the opinion

of your parents and their treatment of you, you have turned out to be a

wonderful, loving, caring person who only cares about others and helping

everyone.

Every time I read one of your emails, I get a smile or I'm concerned if you

are doing well. You bring that out in everyone on this site. I am sure that

any one of the moms on this page will tell you that you are their adopted

daughter.

Carolyn

Mother of Tanis 2 CHARGE and Denny almost 3 months

[Guest guest]

Chantelle,

I am so sorry to have upset you. I look at each child as a gift. I'm not

only mom to a CHARGEr, but also have a 2 1/2 month old son AND am steppie

(stepmom) to Brent 9 and 6. My heart broke when I read your email.

Your emails have been so helpful in the information you have given. You are

a great encouragement to me because right now, I don't know where my 2 year

old is going in life or what we will face, but I do know he can make it!!! I

know this because you are making it and you show that. The love and kindness

and HUGE heart you have shows through on all your emails. Maybe your parents

thought of you as a punishment, but I think of you as a blessing and

encouragement not only to those of us parents who have CHARGErs and children

with other

disabilitis, but to other CHARGErs as well.

I am also a special education teacher and ASL interpreter/teacher of the

deaf. Yes, some parents/caretakers few their children as curses and

punishments.

Honestly, I don't know why--yes, it can be hard. If I had my way, I would

take their " blessings " from them. God gives us children to love, nurture and

teach. The teaching goes both ways. We can all learn from each other.

When Tanis was born and then taken to the Children's Hospital an hour away, I

was shocked. But the only things I could think of were would he live until I

saw him again and how in the world was I going to raise this child. I asked

so many questions I thought the doctors were going to throw me out of the

hospital. But they knew I wanted my baby and I love him. I am more terrified

of

caring for his new baby brother than I am for Tanis. I don't know anything

about " normal " babies. Denny already weighs 13 pounds and Tanis only weighs 26.

I am truly sorry I upset you. Please forgive me. Regardless of the opinion

of your parents and their treatment of you, you have turned out to be a

wonderful, loving, caring person who only cares about others and helping

everyone.

Every time I read one of your emails, I get a smile or I'm concerned if you

are doing well. You bring that out in everyone on this site. I am sure that

any one of the moms on this page will tell you that you are their adopted

daughter.

Carolyn

Mother of Tanis 2 CHARGE and Denny almost 3 months

[Guest guest]

Hi Chantelle,

Some families never come to term with anything in life that is not as they

expected, and I am sorry that your parents treated you so.

My experience is that when a life changing event happens, such as having a

child with CHARGE, having a child die etc, one begins to ask questions of

faith. How could this happen? Why me? What kind of God would do this?

Someone's personal beliefs obviously influences the answers they come up

with. None of us knows the real reason, but most of us do come up with a

" story " , a belief, that brings us to term with these questions. Things like

the Erma Bombeck piece can help some new moms come to terms with this change

in their lives in a positive way, so their child does not experience what

you did.

Going through this process is not like you don't love your child, the love

is more than you can imagine; but with that love comes great fear and

responsibility, how can I help my child, and sadness that the child must go

through so much. Unfortunately some do not make it through this process, or

have other complicating factors in their life, such as addictions or perhaps

mental illness. You know the result, the joy of life is missed.

I hope someday you will be able to come to terms with the pain you have

experienced, that the trouble getting services will settle down, that you

can find help for your dark thoughts, and that you can find JOY!

Kim L

> Ok, I dont want to offend anyone, but here is my rant

>

> Thats real sweet, but I cant picture why my parents would have

> been " awarded " me. The thought of some god giving me to my current

> family makes me shudder. This email remids me of how many times I had

> to endure " god gave you to me as a punishment " and " what did I do in

> my previous life to deserve a child with a dissability " Weather or

> not it was directed towards me I cant help but take it personaly.

> Maby instead of saying that I was a guift to my parenst (im a curse)

> maby im here to teach others. Who knows. Perhaps once I sort out the

> dark thoughts and other behavoiural issues I will discover my true

> self and my purpouse in the grand scheme of life.

>

> Chantelle

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Hi Chantelle,

Some families never come to term with anything in life that is not as they

expected, and I am sorry that your parents treated you so.

My experience is that when a life changing event happens, such as having a

child with CHARGE, having a child die etc, one begins to ask questions of

faith. How could this happen? Why me? What kind of God would do this?

Someone's personal beliefs obviously influences the answers they come up

with. None of us knows the real reason, but most of us do come up with a

" story " , a belief, that brings us to term with these questions. Things like

the Erma Bombeck piece can help some new moms come to terms with this change

in their lives in a positive way, so their child does not experience what

you did.

Going through this process is not like you don't love your child, the love

is more than you can imagine; but with that love comes great fear and

responsibility, how can I help my child, and sadness that the child must go

through so much. Unfortunately some do not make it through this process, or

have other complicating factors in their life, such as addictions or perhaps

mental illness. You know the result, the joy of life is missed.

I hope someday you will be able to come to terms with the pain you have

experienced, that the trouble getting services will settle down, that you

can find help for your dark thoughts, and that you can find JOY!

Kim L

> Ok, I dont want to offend anyone, but here is my rant

>

> Thats real sweet, but I cant picture why my parents would have

> been " awarded " me. The thought of some god giving me to my current

> family makes me shudder. This email remids me of how many times I had

> to endure " god gave you to me as a punishment " and " what did I do in

> my previous life to deserve a child with a dissability " Weather or

> not it was directed towards me I cant help but take it personaly.

> Maby instead of saying that I was a guift to my parenst (im a curse)

> maby im here to teach others. Who knows. Perhaps once I sort out the

> dark thoughts and other behavoiural issues I will discover my true

> self and my purpouse in the grand scheme of life.

>

> Chantelle

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Michele,

My sentiments entirely. I don't think we were 'given' Jack for any purpose,

it just happened.

If God only gave special kids to special people then why are there so many

special needs kids in care or in households where they don't get the care and

support they need ?

Elaine, mum to Elise (12yrs) & Jack (6yrs) CHaRGE

Scotland

[Guest guest]

Chantelle-

I have to agree with you on this one. I know some people find comfort

in thinking that " God only gives you what you can handle " and " your

special child is a gift " etc. But I also find it a troubling thought.

No way would any God either 1) punish me by harming my child or 2)

reward my " goodness and strength " by harming my child. I have to think

that CHARGE (and other " bad " things) happen for no reason really. Not

any related to what I have or haven't done in this life or in another.

If I choose to use my experience with CHARGE to impact others in a

positive way, then that's great. But there are plenty of folks who do

not use tragedy to do good, but who wallow in their tragedies and make

things worse for themselves and others. We all have a grand purpose.

We all have good and bad come into our lives. We all either make the

best of things or don't. No matter what our circumstance, it's up to us

to do with it what we will. Good things happen to bad people. Good

things happen to good people. Bad things happen to bad people. And bad

things happen to good people. There's no theory (religious or

otherwise) that sufficiently explains why.

Have you read " When Bad Things Happen to Good People " by Harold S.

Kushner? If not, you might find it interesting. It helped me to deal

with things like the Bombeck essay etc without feeling angry.

Michele W

[Guest guest]

Glad it helps, because often I think I am talking in circles. Kim

> Kim-

> As usual, you said it so well!! I really appreciate having you on the

> list because you are so good at explaining things clearly.

>

> Michele W

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Hear, hear.

Simon

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: Re: Re: Erma Bombeck on mothers of disabled children....

>Date: Mon, 12 Jul 2004 21:53:48 -0500

>

>Chantelle-

>I have to agree with you on this one. I know some people find comfort

>in thinking that " God only gives you what you can handle " and " your

>special child is a gift " etc. But I also find it a troubling thought.

>No way would any God either 1) punish me by harming my child or 2)

>reward my " goodness and strength " by harming my child. I have to think

>that CHARGE (and other " bad " things) happen for no reason really. Not

>any related to what I have or haven't done in this life or in another.

>If I choose to use my experience with CHARGE to impact others in a

>positive way, then that's great. But there are plenty of folks who do

>not use tragedy to do good, but who wallow in their tragedies and make

>things worse for themselves and others. We all have a grand purpose.

>We all have good and bad come into our lives. We all either make the

>best of things or don't. No matter what our circumstance, it's up to us

>to do with it what we will. Good things happen to bad people. Good

>things happen to good people. Bad things happen to bad people. And bad

>things happen to good people. There's no theory (religious or

>otherwise) that sufficiently explains why.

>

>Have you read " When Bad Things Happen to Good People " by Harold S.

>Kushner? If not, you might find it interesting. It helped me to deal

>with things like the Bombeck essay etc without feeling angry.

>

>Michele W

>

[Guest guest]

Hear, hear.

Simon

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: Re: Re: Erma Bombeck on mothers of disabled children....

>Date: Mon, 12 Jul 2004 21:53:48 -0500

>

>Chantelle-

>I have to agree with you on this one. I know some people find comfort

>in thinking that " God only gives you what you can handle " and " your

>special child is a gift " etc. But I also find it a troubling thought.

>No way would any God either 1) punish me by harming my child or 2)

>reward my " goodness and strength " by harming my child. I have to think

>that CHARGE (and other " bad " things) happen for no reason really. Not

>any related to what I have or haven't done in this life or in another.

>If I choose to use my experience with CHARGE to impact others in a

>positive way, then that's great. But there are plenty of folks who do

>not use tragedy to do good, but who wallow in their tragedies and make

>things worse for themselves and others. We all have a grand purpose.

>We all have good and bad come into our lives. We all either make the

>best of things or don't. No matter what our circumstance, it's up to us

>to do with it what we will. Good things happen to bad people. Good

>things happen to good people. Bad things happen to bad people. And bad

>things happen to good people. There's no theory (religious or

>otherwise) that sufficiently explains why.

>

>Have you read " When Bad Things Happen to Good People " by Harold S.

>Kushner? If not, you might find it interesting. It helped me to deal

>with things like the Bombeck essay etc without feeling angry.

>

>Michele W

>

[Guest guest]

Hear, hear.

Simon

>

>Reply-To: CHARGE

>To: CHARGE

>Subject: Re: Re: Erma Bombeck on mothers of disabled children....

>Date: Mon, 12 Jul 2004 21:53:48 -0500

>

>Chantelle-

>I have to agree with you on this one. I know some people find comfort

>in thinking that " God only gives you what you can handle " and " your

>special child is a gift " etc. But I also find it a troubling thought.

>No way would any God either 1) punish me by harming my child or 2)

>reward my " goodness and strength " by harming my child. I have to think

>that CHARGE (and other " bad " things) happen for no reason really. Not

>any related to what I have or haven't done in this life or in another.

>If I choose to use my experience with CHARGE to impact others in a

>positive way, then that's great. But there are plenty of folks who do

>not use tragedy to do good, but who wallow in their tragedies and make

>things worse for themselves and others. We all have a grand purpose.

>We all have good and bad come into our lives. We all either make the

>best of things or don't. No matter what our circumstance, it's up to us

>to do with it what we will. Good things happen to bad people. Good

>things happen to good people. Bad things happen to bad people. And bad

>things happen to good people. There's no theory (religious or

>otherwise) that sufficiently explains why.

>

>Have you read " When Bad Things Happen to Good People " by Harold S.

>Kushner? If not, you might find it interesting. It helped me to deal

>with things like the Bombeck essay etc without feeling angry.

>

>Michele W

>