Thank you for letting me lurk

[Guest guest]

Hi all!

I just wanted to pop in and say thanks for letting me lurk here. I

joined two weeks ago when we were told that our DD Vivian needed to

be screened for CF. We had been sent to the allergist for testing

due to an incident with a walnut and found out that she was allergic

to many things. The allergist wanted her to have a sweat test done

as Vivian is very small (20 lbs at almost 2 yrs) and she has a

chronic night time cough. We received the results yesterday and

thank goodness they were negative so it looks like we are just

dealing with allergies and possible asthma.

Anyway, reading all of the info in the files and links sections and

reading back posts really helped me to gain some insight on what we

may have possibly been dealing with. You all seem so wonderful and

supportive of each other and you should be proud of that.

I am also a moderator of a torticollis group and an owner of a

plagiocephaly group. I know from experience that these groups are

the best places to be when you need knowledge and support. I was

also wondering - that " welcome to Holland " poem that I received upon

joining the group - was that written by a member or someone else?

It was really wonderful. Would it be okay to share that with my

torticollis group? They would really aprpeciate it as well. It's

not where you planned on being and sometimes you wish that your

child could just be " normal " and healthy but then again you wouldn't

change it for the world because it allows you to experience things

that you never would have gotten to otherwise. (tort is a medical

condition which causes a shortening and tightening of the main

muscle in the neck- it causes an infant/ child to tilt their head

towards their shoulder and causes a lack of range of motion, and it

causes problems with balance and gross motor skills delays. It

requires PT and OT for an average of a year and sometimes requires

surgery)

Anywhoo - enough about that! Thanks so much again. I wish you and

your families all the best.

mom to Vivian

[Guest guest]

" Welcome To Holland " , written by Perl Kingsley, a writer for

Sesame Street and the mother of a now-adult son with Down Syndrome

©1987 by Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with

a disability - to try to help people who have not shared that unique

experience to understand it, to imagine how it would feel. It's like

this …

When you're going to have a baby, it's like planning a fabulous

vacation trip - to Italy. You buy a bunch of guide books and make

wonderful plans. The Coliseum. The Michelangelo . The gondolas

in Venice. You may learn some handy phrases in Italian. It's all

very exciting.

After months of eager anticipation, the day finally arrives. You

pack your bags and off you go. Several hours later, the plane lands.

The stewardess comes in and says, " Welcome to Holland. "

" Holland?!? " you say. " What do you mean Holland?? I signed up for

Italy! I'm supposed to be in Italy. All my life I've dreamed of

going to Italy. "

But there's been a change in the flight plan. They've landed in

Holland and there you must stay.

The important thing is they haven't taken you to a horrible,

disgusting, filthy place full of pestilence, famine and disease.

It's just a different place.

So you must go out and buy new guide books. And you must learn a

whole new language. And you will meet a whole new group of people

you never would have met.

It's just a different place. It's slower-paced than Italy, less

flashy than Italy. But after you've been there for a while and you

catch your breath, you look around … and you begin to notice Holland

has windmills … and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy … and

they're all bragging about what a wonderful time they had there. And

for the rest of your life, you will say, " Yes, that's where I was

supposed to go. That's what I had planned. "

And the pain of that will never, ever, ever, ever go away … because

the loss of that dream is a very, very significant loss.

But … if you spend your life mourning the fact that you didn't get

to go to Italy, you may never be free to enjoy the very special, the

very lovely things … about Holland.

©1987 by Perl Kingsley. All rights reserved.

> I was

> also wondering - that " welcome to Holland " poem that I received

upon

> joining the group - was that written by a member or someone else?

> It was really wonderful. Would it be okay to share that with my

> torticollis group? They would really aprpeciate it as well. >

> mom to Vivian