1.13.2008

welcome to holland


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 your wonderful plans. The Coliseum. The Michelangelo David. 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 that 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 would never 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 that 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 Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.


By Emily Perl Kingsley

7 comments:

Karen said...

Danielle, during the worst of KC's IS I read the Holland poem and it really inspired me. I'm glad you have found it as well, and I'm glad it was shared on our Yahoo group. I love reading your page, and have been here on the sidelines rooting for Trevor. I have been where you are and so far KC has been a success story. I hope that for you and Trevor too.

Karen

www.caringbridge.org/visit/kcmahoney

Anonymous said...

I LOVE this picture of Trev. YOu need to give me one for Feb. 8th!

Grams said...

Don;t laugh too hard but I did not mean to send the previous comment I hit the enter but by mistake. Anyways when are you gonna help me sign up.

baby trevor's mommy said...

Hey Karen,

I'm SO happy you left KC's link...I tried to follow it from a post the other day but for some reason it didn't work?! This one did tho - he's SO beautiful! And it's SO encouraging to read stories like your's!

It means the world that you're following & rooting for us!

...danielle

baby trevor's mommy said...

...lol mom...

I knew it was you! And I LOVE that pic of Trev too!

I'll help you sign up today if you have time!

xoxo...danielle

Karen said...

Hi Danielle.

I am sorry, and happy to hear the news about Trevors MRI. It's so scary when you KNOW something is wrong, but you just don't know what! At the same time, I am hoping and praying that Dr Chungai was wrong, and Trevors brain is ok. (Other than the IS, which is possible!)
Thanks for your post on KC's website : ) I wanted to mention to you, regarding the vaccines that I have heard from people on our group that you should not start vaccines up until at least 6 months after ACTH. I didn't know if you knew that or not. I opted to wait a bit on KC's. I was so scared when I started looking into doing them (I believe KC's IS was triggered by his Pertussis shot) but someone on the group suggested to just take my time and do it when I feel that KC is ready so that's what I did!
Take care Danielle. Hope Trevor is having a good day!

Karen

baby trevor's mommy said...

Actually that makes sense about waiting 6 mos... We just heard from Trev's endochronologist that his cortisol (which from my understanding supports vital organs when our bodies are under stress - ie fevers) is border-line low. He's considered in the *danger* zone for...6 months! So that makes total sense!
I'm really really thinking about finding a doctor who will seperate the vax for me. You know, up until about 2 months ago (when Trev was dx) I thought people who opted out of vax were loooopy. Now it's me!
Anyway...we totally appreciate your support & prayers!
Thanks...danielle