What is it like?

My Mummy has asked me if she could write a bit in my blog and as she made me a yummy lunch I said she could:-

I recently received a card from a friend who also has a disabled son, more of this in a minute. It is very hard when you have a child that is experiencing problems and unless you have been through something similar with your own child it is not really possible to explain how isolating it can be. I am lucky that I live in an age where you can connect with others via the Internet, especially as Isaac's condition is so rare. I am sure people that know us get bored at times of hearing about Isaac's condition but sometimes it is all encompassing. Luckily Isaac's big brother keeps us firmly planted in the land of 'non moebius' life too!

About the card - in it my friend had enclosed a copy of some writing by another mother called Emily Perl Kingsley and she explains how it felt when she had her disabled child and it summed it up so perfectly I thought I would share it with you:-

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.

I hope this helps to explain a little of what it can feel like and so you can understand why we are trying so hard to raise money for Moebius Research. We don't want any other parent to find themselves in Holland, unless of course they are on holiday!

Love Isaac's Mummy x