Wednesday, 11 July 2012


A few weeks ago I stumbled across this fantastic blog written from the perspective of parents in a very similar situation to ourselves. Through that blog I found this wonderful piece of literature...


Emily Perl Kingsley.
c1987 by Emily 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 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.

Isn't it wonderful? I wish I had written it myself. I feel like with Will we are in Holland, we are noticing the tulips and the windmills and we are beginning to see Rembrandts in our future. But with Harriet I am still on the plane. I wanted to go to Italy this time. I don't want to go back to Holland. I don't want to get off the plane. There has been a mistake, surely? No-one goes to Holland twice, even if you have noticed it's not all bad. I am stamping my feet. And shaking my head. I want to go to Italy. Just once. Please. 

What not to say

I have written a post like this before, when Will was little and people used to drive me crazy with their well meaning advice or sympathy. I now have two deaf children and people aren't any less well meaning, or any less annoying. I know they are trying to help but please, please, don't say these things to me...

  • "I know if I had a choice between a child that was blind or a child that was deaf I would choose deaf". - People are STILL saying this!!! You see, the thing is, I didn't get a choice. If I had a freaking choice I would have chosen a kid with no disabilities at all. It's not the best of bad situation. It's just a bad situation. 
  • "At least she is a girl"
    - Really? You think that makes it better? You think that I am less upset about her hearing loss because I can put her in frilly dresses? In reality it makes it harder because I worry about completely different things for her than I do for Will. It's a difficult world for women and having big magnets stuck to the side of her head isn't going to make it any easier for her.
  • "Now you've got one of each at least you don't have to have any more"
    - I know I resigned a few weeks ago but I have since changed my mind. I want more. I don't know how many or if we will actually have more but I have definitely decided to stop not wanting more. Either way it really is none of anyone else's business whether we have more kids or not. And the only thing worse than feeling like I can't have more because they are deaf is knowing that you feel that way too. 
  • "Awwww, that's a shame"
    It is a shame, in fact it is a freaking disaster. But please don't say it in that sympathetic tone with your head cocked to the side and that sadness in your eyes. My heart is broken so I need you to at least pretend everything is OK just to help me get through the day.

    To be honest there is probably very little you can say so perhaps just don't ask about their hearing. Ask how much they weigh, what they enjoy doing, what they think of one another. Ask me how I am. Ask me if I would like a cup of tea or a gin and tonic. Don't ask me about their hearing and, this is the key, do not try and make it better. You can't and it just pisses me off.