Re: Re: talking about CHARGE

[Guest guest]

hi..I am new to the group, and to this syndrome. My name is Vicki,I live in

Texas, and my granddaughter,,has CHARGE. I am also an RN. I am so glad

that there is a group like this..I need help,information,and support for both me

and my daughter, (they neamed the baby after her). Thanks for allowing

me to become a part of this. Vicki Hannon

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> Date: 2004/11/13 Sat PM 02:02:52 GMT

> To: CHARGE

> Subject: Re: talking about CHARGE

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[Guest guest]

Welcome to the list. How old is your grandaughter ?

Being a grandparent of a child with CHARGE is a unique position, because you

love and are concerned for the grandchild, but also as parents we don't like

to see our kids suffer, so if your daughter is having a hard time, you get

double. Let us know how we can help you and your daughter.

Kim L

Re: talking about CHARGE

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[Guest guest]

There are so many things in your message to talk about. The most important

thing to remember is that you don't have to do it all. And the second is to

find help some way. When Patty was born my parents told me not to seek

professional help because we have a very open and communicative family. I

thought

that was wonderful that I had that support. They were wrong. It took me years

to learn they just couldn't understand and that i needed to seek real help.

Because of my religion I sought help from my priest. He was wonderful for

and I. My mother was upset about that because she thought I might talk about

her and embarrass her. She just didn't get it. I also sought professional

help here and there along the way. I assume I will again and again. It helps

to talk to a specialist though you have to be careful that you find the one

that is right for you. I don't take meds for that though I did learn a multitude

of relaxation techniques.

About my family, that is hard for me especially lately. It appears as though

they just don't understand. I am hurt most by my mother. She just doesn't

understand us or our lives. She makes it hard on Patty by making her " normal "

or act like that. Then they get in to a battle. Both are hardheaded and it

ends up torture for them. Because I have to keep Patty mentally I have to tell

my own mother to back off. She was fabulous when Patty was younger but she

just doesn't understand now.

Then there is my husband. Although he is the most incredible man I ever met

it hasn't always been easy. We did fight at times when we shouldn't have.

The thing I had to learn is that he doesn't think or feel the same way I do.

Sometimes I can't understand that but that's OK. And he does get to do the fun

things with the girls. I used to get jealous but I learned to share. I also

used to be terrified that if something happened to me that he and the girls

would fall apart. Since then though I learned to delegate some of my

responsibilities. I let him empty the dishwasher even though he doesn't put the

glasses

away by height. He helps with the laundry even though all he does is wash

and dry and then I fold. I had to learn what to let go of and what to hold on

to. So he doesn't do the medical stuff but he does have his own trauma and

worries. We are now married for over 22 years. It gets so much better as the

kids get older. The things that is and always has been important in our

marriage

is to be able to laugh together. I hear how hard it is for you right now.

Think back on why you married your husband and see if those qualities are still

there. Then laugh.

Now about the guilt of being afraid your other children are missing out- got

nothing for you there. I still worry. All Ikknow is that a, Patty's

sister, loves us very much and says things are good. She did well in school,

has been basically happy growing up and is content with who she is. All I can

do is continually tell her how thrilliing it is to be her parent and that we

love her. She knows. I wish I had advice here but I think we all worry

about all our chidren.

Bonnie, Mom to a 22, Patty CHARGE 20, and happily (at least right now)

wife to

[Guest guest]

Hi Vicki and welcome

Kay

50 yr old charger

Re: talking about CHARGE

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