Re: RE: getting through the day

[Guest guest]

Audrey,

I am glad you came back in during this thread. As my husband says life is

full of ages and stages. As our kids go through new stages, we do as well,

if they have CHARGE or not. We need support going through these stages and

I wonder how much of it has to do with our own age as well. For me it has

been hardest with Tyler, it is like he has paved the way, all of my

parenting experience comes from him. Maybe the transition through

adolescence will be just as hard with the other two, but I am hoping that

just like with navigating special ed, it will be easier the second time

through. One can always hope.

I wish I could offer some real answers.

Kim L

Tyler 16, Kayla 13, Dylan 8 CHaRGE

to Vicky Sirota

Dear Vicky-

You email really pulled at my heart. I remember the first four years

of 's life all we hoped for was another day with him. For him

to breath better, for him to be less ill - just another day, another

chance to grow and be stronger. Living minute to minute, moment for

moment. After that experience my husband and I were both just

thrilled to have him. Though we accepted him fully as he was, we

would wonder " will he talk? will he have language? will he ..... "

And whenever he did anything at all, the overwhelming gratitude and

the accompanying release of the acceptance and fear that this moment

might not come to pass woud always bring us physically and

emotionally to our knees. In some ways, its like always living the

last moments of our lives. The intensity, the awareness, the

gratutude, the appreciation.

I do have to say that as has become so self sufficient and

independant, the feeling of intense gratitude, humility and

vulnerability aren't as constant. Somedays I can take life as much

for granted as the next person. But the feeling is never far away.

It has also connected us to nearly every human joy, sorrow, blessing

and burden.....I do feel it is a blessing to be so humanly alive -

but often when I share it with other people, they only see the pain.

I don't feel it as pain.

take good care- thank you for your reply-

Yuka

> Yuka,

>

> thank you for sharing your conversation with us. It

> gave me hope that you were able to have such a

> conversation with your son with CHARGE. My son is

> currently 17 months and we do not know what the future

> will bring. I think about all the other moms that

> were pregrnant at the same time and what their

> children are doing now (and what my son is not), of

> all the doctor appointments goes to (and what

> their children are not) of all the beautiful days we

> were not able to go outside because we were either

> sick or going to doctors (and they were taking

> stroller walks with their kids)and all the terrible

> thoughts I had, and the guilt and the shame I felt. I

> thank you for sharing your conversation. I think that

> these kids are a miracle and a blessing. Now when I

> cannot take anything for granted...I am greatful for

> the little things in life that matter the most.

>

> Thanks

>

> Vicky mom to Josh 8, Gabby 6 1/2 and 17 month

> Charger

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]

Audrey,

All I can say is that Patty who is now 20 has had and continues to have a

life others thought was impossible. I too worried about the same things you and

others do. It continues. I don't think it will ever end but that's ok. Her

life is so much better than I ever dreamed it could be. Patty struggled with

peer acceptance in her regular ed program. Part of that was becasue there

were so many people who didn't understand her need for socialization. Because

she consistantly had a 1 on 1 which meant she was always with an adult. She had

to work twice, sometimes three timies as hard as others to accomplish the

goals so she seldom got little free time. The social opoprtunities were

mininmal

becaus in my opinion it should have been facilitated by an adult who then

should have slowly " disappeared " when things were going well. Patty can't blend

in because she is who she is. We can't make her blend in eithor. That is

fine by me because she stands out and makes people understand. So what we do is

rejoice in her uniqueness and if people don't understand that or judge her

then they are fools.

I also have to say also that Patyt has had a fun time with her life so far.

Sometimes that is her biggest problem. She just loves fun! It has been hard

but with her strength and determiniation she has accomplished tons. Because

of her involvement with Perkins as she got older she met friends there who

didn't judge her by her looks or how she fit in to a mold. As a matter of fact

she made friends while she was there and one of those friends took her to her

junior prom. She had a better time than most girls do.

Patty right now is sitting at home because of rediculous judgements people

have made about her, or then again there always is that financial issue from

service proviers, but It doesn't matter though. Patty is going to have a life

where she will be as independant from us as possible. She will be happy, she

will be content, and hopefully, almost surely, she will have love as well. It

just takes a little longer but when things happen they are all that much

better.

Life is what it is. Patty is who she is. All our children are who they are.

But each and every person can and will grow and move on. It is just going

to be different, and not bad.

The true lessons I have learned is that we shouldn't have had to make her

" fit " in so much and should have had sign language, technology opportunities,

and

should have focused a bit more on social learning and opportunities.

Don't get too scared. And don't look too far down the road. Every time we

did that we soon had to change plans.

But the road we have traveled so far has been oh so good. People just don't

understand that. There has been hardships and struggles but with that the

successesses are more miraculous.

Patty's future is brighter than most thought when she was young. Rejoice in

whatever you can. And remember no one has all the answers.

Bonnie

[Guest guest]

Patty is a beautiful person.

Kay

Re: RE: getting through the day

>

> Audrey,

>

> All I can say is that Patty who is now 20 has had and continues to have a

> life others thought was impossible. I too worried about the same things

> you and

> others do. It continues. I don't think it will ever end but that's ok.

> Her

> life is so much better than I ever dreamed it could be. Patty struggled

> with

> peer acceptance in her regular ed program. Part of that was becasue there

> were so many people who didn't understand her need for socialization.

> Because

> she consistantly had a 1 on 1 which meant she was always with an adult.

> She had

> to work twice, sometimes three timies as hard as others to accomplish the

> goals so she seldom got little free time. The social opoprtunities were

> mininmal

> becaus in my opinion it should have been facilitated by an adult who then

> should have slowly " disappeared " when things were going well. Patty can't

> blend

> in because she is who she is. We can't make her blend in eithor. That is

> fine by me because she stands out and makes people understand. So what we

> do is

> rejoice in her uniqueness and if people don't understand that or judge her

> then they are fools.

>

> I also have to say also that Patyt has had a fun time with her life so

> far.

> Sometimes that is her biggest problem. She just loves fun! It has been

> hard

> but with her strength and determiniation she has accomplished tons.

> Because

> of her involvement with Perkins as she got older she met friends there who

> didn't judge her by her looks or how she fit in to a mold. As a matter of

> fact

> she made friends while she was there and one of those friends took her to

> her

> junior prom. She had a better time than most girls do.

>

>

> Patty right now is sitting at home because of rediculous judgements people

> have made about her, or then again there always is that financial issue

> from

> service proviers, but It doesn't matter though. Patty is going to have a

> life

> where she will be as independant from us as possible. She will be happy,

> she

> will be content, and hopefully, almost surely, she will have love as well.

> It

> just takes a little longer but when things happen they are all that much

> better.

>

> Life is what it is. Patty is who she is. All our children are who they

> are.

> But each and every person can and will grow and move on. It is just going

> to be different, and not bad.

>

> The true lessons I have learned is that we shouldn't have had to make her

> " fit " in so much and should have had sign language, technology

> opportunities, and

> should have focused a bit more on social learning and opportunities.

>

> Don't get too scared. And don't look too far down the road. Every time

> we

> did that we soon had to change plans.

>

> But the road we have traveled so far has been oh so good. People just

> don't

> understand that. There has been hardships and struggles but with that the

> successesses are more miraculous.

>

> Patty's future is brighter than most thought when she was young. Rejoice

> in

> whatever you can. And remember no one has all the answers.

>

> Bonnie

>

>

>

[Guest guest]

Thank you for such a " real " and beautiful message. You experienced ones are a

constant source of strength and learning for me.

Lori Myers

Mother to 4 CHARGE, 7, and Emma 2

-------------- Original message --------------

>

> Audrey,

>

> All I can say is that Patty who is now 20 has had and continues to have a

> life others thought was impossible. I too worried about the same things you

and

> others do. It continues. I don't think it will ever end but that's ok. Her

> life is so much better than I ever dreamed it could be. Patty struggled with

> peer acceptance in her regular ed program. Part of that was becasue there

> were so many people who didn't understand her need for socialization. Because

> she consistantly had a 1 on 1 which meant she was always with an adult. She

had

> to work twice, sometimes three timies as hard as others to accomplish the

> goals so she seldom got little free time. The social opoprtunities were

> mininmal

> becaus in my opinion it should have been facilitated by an adult who then

> should have slowly " disappeared " when things were going well. Patty can't

blend

> in because she is who she is. We can't make her blend in eithor. That is

> fine by me because she stands out and makes people understand. So what we do

is

> rejoice in her uniqueness and if people don't understand that or judge her

> then they are fools.

>

> I also have to say also that Patyt has had a fun time with her life so far.

> Sometimes that is her biggest problem. She just loves fun! It has been hard

> but with her strength and determiniation she has accomplished tons. Because

> of her involvement with Perkins as she got older she met friends there who

> didn't judge her by her looks or how she fit in to a mold. As a matter of fact

> she made friends while she was there and one of those friends took her to her

> junior prom. She had a better time than most girls do.

>

>

> Patty right now is sitting at home because of rediculous judgements people

> have made about her, or then again there always is that financial issue from

> service proviers, but It doesn't matter though. Patty is going to have a life

> where she will be as independant from us as possible. She will be happy, she

> will be content, and hopefully, almost surely, she will have love as well. It

> just takes a little longer but when things happen they are all that much

> better.

>

> Life is what it is. Patty is who she is. All our children are who they are.

> But each and every person can and will grow and move on. It is just going

> to be different, and not bad.

>

> The true lessons I have learned is that we shouldn't have had to make her

> " fit " in so much and should have had sign language, technology opportunities,

> and

> should have focused a bit more on social learning and opportunities.

>

> Don't get too scared. And don't look too far down the road. Every time we

> did that we soon had to change plans.

>

> But the road we have traveled so far has been oh so good. People just don't

> understand that. There has been hardships and struggles but with that the

> successesses are more miraculous.

>

> Patty's future is brighter than most thought when she was young. Rejoice in

> whatever you can. And remember no one has all the answers.

>

> Bonnie

>

>

>