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thanks for sharing your story :o) xx
teagan mia 03/05/06Heart
ruby hannah 12/09/08 Heart
jaimee evanna 07/10/09 Heart
jaimee grade 4 ivh hemiplegia cp and global development delay
love my 3 girls all the world mommys perfect princesses xxxx
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Congratulations mummy of matty. Fight

I think all of us can relate to what you have said in some way or another or maybe all of it.
It is hard not to think too far ahead when others are!

I still look at other children running around without a care in the world and thinking that could have been, what might have been ......., but Michael is Michael and I wouldnt change him for anything.

So far this summer into the 3rd week, as usual has been spent around Michael, physio, hospital appointments, seeing new equipment in school/home. Also the rep is coming out to do the plans for the LIFT SHAFT and they are looking at starting in September - we cant wait, this will be a big help to all of us, we've been waiting 3 years for them to decide what to do and then to do the lift shaft, a very long wait. Let you know how it goes and pictures will follow.

Also my daughter Jennifer has been brilliant I am hoping she has turned a corner in her attitude towards her brother, since she was 3 and shes 9 now she's been awful to me and her brother. She said all she wanted was to be able to run around the garden with him and also being a boy didnt help she wanted a sister!!!!!!


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Thankyou for sharing your story x
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Thank you sclarke19. xxx
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(08-01-2010, 05:48 PM)Daniel Wrote: Its funny because logic would say you should be out there enjoying every minute but im only human and those thoughts do hurt everyday and so how do you possibly get past that?

I don't think you can get past it, every time you see a friend or family members child reach a milestone that you know your child wont reach its going hurt, I think the trick is to learn how to not to let it spiral into something depressing and destructive because anything that stops us from enjoying the beautiful children we have is not good. I know its an old cliche but I try and remember that there are children out there going through worse and battling for there lives and I just try and be grateful that Alex is here and happy.

There is a wonderful poem called 'Welcome to Holland' and I keep a copy with me at all times, some of you may already know it but for those that don't here it is:


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.

Mum to Alexander (6) Friedreich's Ataxia and Hypertrophic Cardimyopathy

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