Re: Sleep problems and another question

[Guest guest]

Almost all CHARGErs! This is almost more than I can contemplate

tonight. spat all of her meds. After last night with little sleep, we

virtually forced her to take them on the second go-around. As odd as it

must sound, we are gentle people almost to an extreme, and I feel just

awful; obviously not awful enough. Ugh. And the child/young woman just

grinned and beamed...

On Saturday, if weather and other things hold, we're driving to a small

Missouri town to meet another CHARGE young woman. One of her

professionals contacted me through this list. I'm unusually nervous. I've

never met another 20 or so year old CHARGEr. She apparently lives in a

rural area, and the caregivers are looking for much help from Andy and

me. I know that she made it through the school for the deaf which is

notorious for taking kids who're only deaf and that the care givers have

virtually no information on her. Can ya'll come up with things we need to

convey? I'd really, really like to help. Thanks - a sleepy Martha

[Guest guest]

Martha,

Often people just want to meet someone who knows what they are going

through. You do not need to have all the answers, but only the ability to

listen and share your experiences. You are wonderful at that already.

I am sorry you are not getting the sleep you need. I wish I had answers.

Kim L

> Almost all CHARGErs! This is almost more than I can contemplate

> tonight. spat all of her meds. After last night with little sleep, we

> virtually forced her to take them on the second go-around. As odd as it

> must sound, we are gentle people almost to an extreme, and I feel just

> awful; obviously not awful enough. Ugh. And the child/young woman just

> grinned and beamed...

>

> On Saturday, if weather and other things hold, we're driving to a small

> Missouri town to meet another CHARGE young woman. One of her

> professionals contacted me through this list. I'm unusually nervous. I've

> never met another 20 or so year old CHARGEr. She apparently lives in a

> rural area, and the caregivers are looking for much help from Andy and

> me. I know that she made it through the school for the deaf which is

> notorious for taking kids who're only deaf and that the care givers have

> virtually no information on her. Can ya'll come up with things we need to

> convey? I'd really, really like to help. Thanks - a sleepy Martha

>

>

>

> 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]

Martha,

Often people just want to meet someone who knows what they are going

through. You do not need to have all the answers, but only the ability to

listen and share your experiences. You are wonderful at that already.

I am sorry you are not getting the sleep you need. I wish I had answers.

Kim L

> Almost all CHARGErs! This is almost more than I can contemplate

> tonight. spat all of her meds. After last night with little sleep, we

> virtually forced her to take them on the second go-around. As odd as it

> must sound, we are gentle people almost to an extreme, and I feel just

> awful; obviously not awful enough. Ugh. And the child/young woman just

> grinned and beamed...

>

> On Saturday, if weather and other things hold, we're driving to a small

> Missouri town to meet another CHARGE young woman. One of her

> professionals contacted me through this list. I'm unusually nervous. I've

> never met another 20 or so year old CHARGEr. She apparently lives in a

> rural area, and the caregivers are looking for much help from Andy and

> me. I know that she made it through the school for the deaf which is

> notorious for taking kids who're only deaf and that the care givers have

> virtually no information on her. Can ya'll come up with things we need to

> convey? I'd really, really like to help. Thanks - a sleepy Martha

>

>

>

> 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]

Martha,

Often people just want to meet someone who knows what they are going

through. You do not need to have all the answers, but only the ability to

listen and share your experiences. You are wonderful at that already.

I am sorry you are not getting the sleep you need. I wish I had answers.

Kim L

> Almost all CHARGErs! This is almost more than I can contemplate

> tonight. spat all of her meds. After last night with little sleep, we

> virtually forced her to take them on the second go-around. As odd as it

> must sound, we are gentle people almost to an extreme, and I feel just

> awful; obviously not awful enough. Ugh. And the child/young woman just

> grinned and beamed...

>

> On Saturday, if weather and other things hold, we're driving to a small

> Missouri town to meet another CHARGE young woman. One of her

> professionals contacted me through this list. I'm unusually nervous. I've

> never met another 20 or so year old CHARGEr. She apparently lives in a

> rural area, and the caregivers are looking for much help from Andy and

> me. I know that she made it through the school for the deaf which is

> notorious for taking kids who're only deaf and that the care givers have

> virtually no information on her. Can ya'll come up with things we need to

> convey? I'd really, really like to help. Thanks - a sleepy Martha

>

>

>

> 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]

I agree with Kim, there are people who just want to meet someone else who has

gone through what they've gone through, but if they ask hard questions that you

can't answer, just ask if they have a computer then give them our website, or if

they don't have a computer you can get their address and then get back to us and

we'll help you and them.

Sincerely yours; Krista.

Kim Lauger wrote:

Martha,

Often people just want to meet someone who knows what they are going

through. You do not need to have all the answers, but only the ability to

listen and share your experiences. You are wonderful at that already.

I am sorry you are not getting the sleep you need. I wish I had answers.

Kim L

> Almost all CHARGErs! This is almost more than I can contemplate

> tonight. spat all of her meds. After last night with little sleep, we

> virtually forced her to take them on the second go-around. As odd as it

> must sound, we are gentle people almost to an extreme, and I feel just

> awful; obviously not awful enough. Ugh. And the child/young woman just

> grinned and beamed...

>

> On Saturday, if weather and other things hold, we're driving to a small

> Missouri town to meet another CHARGE young woman. One of her

> professionals contacted me through this list. I'm unusually nervous. I've

> never met another 20 or so year old CHARGEr. She apparently lives in a

> rural area, and the caregivers are looking for much help from Andy and

> me. I know that she made it through the school for the deaf which is

> notorious for taking kids who're only deaf and that the care givers have

> virtually no information on her. Can ya'll come up with things we need to

> convey? I'd really, really like to help. Thanks - a sleepy Martha

>

>

>

> 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!

>

>