Coping

[Guest guest]

Michele,

I feel like maybe I shouldn't respond to your question about it

getting better but I feel it doesn't! I can actually feel jelous of my friends

who have children the same ages as mine 15 (my CHARGER) and 17 my daughter.

They actually have so much free time and are looking forward to time with

their spouses when their kids are in college........................I could

scream! Here we are with what seems at times a 3year old. I have one friend

who has children the exact same age she was talking about her son going to the

homecoming dance and skateboarding all over it actually made me feel

ill.......not that I would ever tell her but......I guess I don't really have

words for how I feel ..........................it's not good.

V.

[Guest guest]

Jeanne-

I love that quote about the wind and sails. I can't remember what book

I read, but it was a Taoist thing that had a story about carry a large

piece of plywood on a windy day. If you postion yourself wrong, the

wind will blow into the wood and make your task impossible. But if you

turn just right, the wind will slide by the wood without trouble or it

might even push you along a bit! I love that image and it helps me so

much in times of strife.

I too hope that I can turn this into a positive by helping others in a

similar situation and by opening the minds of the " outside world " so

they can maybe see disability in a different light. One way I cope

right now is by making myself open to others so that they can learn from

my experience. Sometimes by reaching out I am able to help others and

sometimes it gets me the help or comfort I need.

I ran into a particular situation yesterday that keeps coming up. Maybe

you will have some insights. Whenever I go out with my friends, I come

home depressed. I enjoy getting away and being with them, but it drives

me nuts that they are dealing with such mundane things that I don't even

have time to consider. One gal had spent all morning yesterday cleaning

the closets. Wouldn't I love that! And she went on and on about some

pictures she'd bought for the wall with lovely matting, blah, blah,

blah. I just thought, " Yeah, like I care about all this. " Then I feel

like I just wanna crawl under the table cuz I have nothing to talk about

that is equally mundane. I feel so " different " from everyone else now.

Does that feeling get better?

Michele

mom to Aubrie (10.5 mos) CHargE and (7 yrs)

IL

westml@...

[Guest guest]

Jeanne-

Thanks for being so frank and honest. I understand your worries about

another child. Honestly, I've adored from birth. He's so

handsome and very intelligent. I worried about having a second child

cuz I wondered how any other could compare and I didn't want a second

child to live in his shadow. I wondered what would happen if my next

was not quite so bright or adorable. Well, Aubrie solved that for me!

There's definitely no comparing them. But she's equally precious and

wonderful and I've learned that I can be proud of his exceptional

qualities without taking away from Aubrie. I also learned that love

doesn't depend on being " perfect " -- which isn't by far, but he

sure does have a lot going for him. The people who have a second child

after their CHARGEr will probably tell you that the " normal " child is a

pleasure and doesn't take away from your first. Of course, I don't know

how anyone could have the courage to risk another pregnancy after what

we've all been thru. I'm so thankful that Aubrie was planned to be our

last. And I guess I'm thankful that we have to force me into the

regular world. I think that in your situation I would cope in much the

same way. I am tempted now to retreat into the world of the disabled.

I enjoy my friends with special kids and I love meeting new people who

understand disability for whatever reason. But forces us to do

" normal " stuff and maintain our ties with our old friends. I guess it's

good for all of us. I remember when Aubrie was first born -- if not for

, I never would have smiled or laughed.

Anyway- you made me feel much better knowing that I'm not alone in my

feelings. I'm glad you're back on the list. I missed you while you

were off.

Michele

mom to Aubrie (10.5 mos) CHargE and (7 yrs)

IL

westml@...

[Guest guest]

V.-

I wish you didn't still feel so bad! Unfortunately, I understand it all

too much already. There are a group of women who go out for dinner once

a month. I was involved in forming this little bunch and I've been so

glad to be a part of it. But -- last month, guess where I ended up

sitting? Right between two other new moms. I came home in tears after

listening to them talk about their babies. I didn't realize how hard it

was while I was sitting there. But I was depressed for almost a week

after that. I decided I'd have to sit away from them. I may even have

to segregate the group just for my benefit -- those with babies on one

end, those without on my end. Otherwise, it's just not worth it for me

to go out with them. It's so frustrating cuz this is supposed to be my

release. I feel guilty for not being able to listen and share in my

friends' joys. And I hate to think that they have to act differently

when I'm around. But I realized that they are my friends and they will

adjust for me if I need them to. I guess I was hoping it wouldn't be

forever tho. You know, I worried that some so-called friends would drop

out of my life because they couldn't handle my problems. But it turns

out that I'm the one who may cause the end of some friendships because I

can't handle it. Does that make any sense?

I could go on and on. I'm really struggling to figure out how all this

effects my identity and my roles now. It's weird.

Michele

mom to Aubrie (10.5 mos) CHargE and (7 yrs)

IL

westml@...

[Guest guest]

Compared to many we can say the same as others have said ' that their

child is mildly affected'. But if Talisa did not have language there

would be no way I would be saying this. Because even now in an

unstimulating environment she will fall back on an old habits, or

invent new ones, and all your interactions are disrupted because of it.

As Jeanne said about people and their trivialities, I am afraid I

am not a tolerant person when it comes to these people. At work I have

to put up with people telling me I am lucky that I only work to shifts a

week. I reply I am studying full time (Auslan - Deaf Studies) and have 4

assignments due, I have 2 children etc.. , swop lives and then tell me

how easy I have it.

But the truth is I wouldn't swop my life with anyone. Sometimes

I'd like to be less busy, but I would never wish to be one of those

women that can spend 15 minutes talking about cleaning the bathroom. (A

conversation I over heard at Alessi's school once). It is true that

sometimes I wish that Talisa was only Deaf and had no other problems.

But this family is what it is because of her. Alessi would not be who

she is if Talisa wasn't her sister. And I certainly know that I have

done things I never thought possible of myself, and I am sure Warwick

feels the same.

Jackie Warwick Talisa 9 (charge) Alessi 6

[Guest guest]

In a message dated 10/24/98 8:47:57 PM Eastern Standard Time,

jemcat@... writes:

<<

Sorry I can't offer you much help. Again, by limiting my exposure to

these people I am better able to cope. I'm sure this isn't helping

Caitlyn any, but it's more important that I stay sane enough to care for

her than to expose us to " typical " children/families each and every day.

(I know I'm going to get hell from a lot of people out there for these

views. Just remember, we all have different coping mechanisms).

Jeanne

>>

Jeanne,

You won't catch hell from me. It was so hard after we left Seattle to NJ

because I left all my friends w/ disabled kids. I had no one to talk to, no

one to understand. It was so lonely. I'm still lonely here in NY, but, for the

first time in years I met a family w/ a beautiful little 8 y.o. girl w/ Down

Syndrome. They live right next door, but it took me 5 months to realize she

was there and get the courage to go over and introduce myself. Destiny and

Tori got along like soul mates. Destiny talked about her for days and cried

when I said we could not go over and play when they were out of town. I've

never seen her get so excited about a friend. She's a take it or leave it

kinda kid so this was a surprise. Mom's nice too, but very busy. She's trying

to get a support group together of familles w/ " special needs " kids. Turns out

there are a half dozen of us here in military housing, but no one knows about

the others--we all just know Tori's mom. It was nice to see Destiny play w/

another kid who didn't ask why she is still in diapers, can't talk right or

what that funny thing on her tummy is. I loved talking to the mom about

services available here and past medical/educational/social history. For the

first time I didn't feel so alone. On the playground, for once, WE were in the

majority and the kids were having a BLAST. I can't wait to get the girls

together again.

(Destiny 5 1/2 CHARgE, Zachary 3 1/2)

Staten Island, NY