Tuesday, September 30, 2008

How I Feel...

Often people ask me how I am raising 3 children with disabilities. I often say, "You just 'do it'!" That is not a good answer, but I have never been able to put into words how I have felt over the past 7 1/2 years, since giving birth to Hannah.

Today we had an in-service at Hannah's school for her
teachers/aid/principal/specials' teachers, etc. The in-service was
lead by the outreach coordinator from the Indiana School for the Blind
and Visually Impaired. (Try saying that 5 times...)

She shared an essay with us, written by Emily Perl Kingsley. Wow, was
this an ah-ha moment!!!! I have never heard this before, and maybe
many of you have.
This essay describes to a 'T' how I feel about
raising 3 children with special needs!

With Jonas, the feelings are different: we 'chose' him, and knew most of his needs going into our
adoption. Though I wish he could see the world around him with his
eyes, I rarely even think about him being blind! I know, it sounds
strange. I don't often think about Hannah being blind or Micah having Spina Bifida either. It is a part of them, and it has made them 'who' they are as a person. But, after giving birth to them, more so with Hannah, I had to deal with a lot of grief and mourning. It was a loss of a 'dream'! Just things like, Hannah never being able to 'see' how BEAUTIFUL she is; never being able to 'look' at her and connect with her as I nursed her as baby; not being able to 'see' with her eyes the beautiful children that she will bring into the world someday, etc... I could go on and on... Micah, not being able to run as fast as other kids, having to be cautious about touching anything that has latex in it, having multiple surgeries, having to cath 4 times a day, and do an enema every evening; being questioned by kids at school for still wearing pull-ups...

I am not trying to be negative, or have a pity party; that is not me, but I am trying to be 'real'! Hannah is sooooo proud to be blind! I asked her the other day if she would ever want to get her eyes 'fixed', so that she could see with them, and she said, "no." (BTW: There is not a surgery to fix her eyes. We would have done that if it was available) She is not missing out on anything, as far as she is concerned,and she LOVES LIFE!!!!!!

Okay, enough of my rambling... Here is the essay:
by Emily Perl Kingsley

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 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 guidebooks. 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.

Reprinted with permission from Emily Perl Kinglsey. 1987 copyright by Emily Perl Kingsley. All rights reserved.

Read CreativeParents.com interview with Emily Perl Kingsley.

This could not have described my feelings any better, if I had been able to come up with this myself!

I hope you are blessed as much in reading this as I was. Even if you do not have children with special needs, hopefully this will enlighten you as to how 'we' feel.


Heather said...

I agree, being blind is just how Acer is, and dealing with it as best we can is just what parents do. It's not really a big deal once you get used to it you almost forget about it.
Heather BT

Laurie said...

Wow, she did describe that well. Thanks for putting that part of you out there for us to know. Everything I've seen and heard (from you, and from little videos of Hannah,etc) have proven that they are just the happiest and most 'normal' kids in town! They are precious and are so blessed to have a mom like you.

Rebekah Hubley said...

I totally agree! It is not until someone else makes a big deal about it!

Rebekah Hubley said...


Thank you! I can't wait until we meet someday! Hopefully it is sooner rather than later. You are a great friend, even though we have never met face to face! Who would have ever thought that friendship could happen this way??? :-)

Erin & The Boys said...

I love this entry! Thanks for sharing it. Your family is an inspiration.