A Trip to Holland

[grace]

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.

 

[LaineyG]

Oh luv! That ia beautifully put. What a fantastic way to explain it!

It must be very difficult for you at times. But i'm a great believer (now) in finding the positives in everything that happens to us, no matter how negative things seem.

You are a shinning example to us all.

I remember the night you posted in the tri's about bleeding and having some pain. I urged you to call the hospital. I thought about you all night and worried about you. The next thing you posted was to tell us that Ami was here! You've been in my thoughts ever since.

Keep your chin up and whenever it gets too much, remember the first time Ami smiled at you.



xxx

 

[LucyBee]

That brought a tear to my eye Grace.
What lovely words. It's like poetry. You should send it to one of the baby magazines and see if they'll publish it. It's really beautiful.
Lucyx
PS: Holland sounds like a very special place to me. People can take things a bit for granted in Italy! xx

 

[Tadpole]

Oh - that is beautiful.

I am totally with you on this one. My cousin has very severe cerebral palsy, (and other things), which mean he cannot walk or talk and is fed through a permanant gastro feeding tube. People have said, "what a shame, it's no life". But they are SO wrong. He communicates through eye movements and sign language and is very happy and contented. He is a lovely boy of 12 and is an inspiration to us all. I feel honoured to know him.

You sound like a very special person.

 

[grace]

as much as i want to take the credit for writing that, i didnt. should have put it in 1st post, sorry to mislead you.

i cry everytime i read it though, felt the need to share. i stumbled upon it and couldnt believe how true it is to me.

i go through phases, sometimes i feel great about the future and am sure Ami will be fine but then other times, like now, im almost paralysed by fear of the future. i hope she will one day be able to say mummy and give me a hug. i hope she will be able to walk and run and play with other children. i hope she will go to mainstream school and have loads of friends.

its the not knowing that kills me. there are no guarantees. her major motor skills are really behind, she hasnt got her head control yet, things like sitting up seem a million miles away.

just needed to write that down, sorry if i seem like im on a downer. it will pass. a cuddle with her is great therapy! xx

 

[Squiglet]

as much as i want to take the credit for writing that, i didnt. should have put it in 1st post, sorry to mislead you.

i cry everytime i read it though, felt the need to share. i stumbled upon it and couldnt believe how true it is to me.

i go through phases, sometimes i feel great about the future and am sure Ami will be fine but then other times, like now, im almost paralysed by fear of the future. i hope she will one day be able to say mummy and give me a hug. i hope she will be able to walk and run and play with other children. i hope she will go to mainstream school and have loads of friends.

its the not knowing that kills me. there are no guarantees. her major motor skills are really behind, she hasnt got her head control yet, things like sitting up seem a million miles away.

just needed to write that down, sorry if i seem like im on a downer. it will pass. a cuddle with her is great therapy! xx

I love that post... it was sent to me after I had Tia by my mum, who had received with regards to my sister.

I'm very lucky to have gone to Holland and Italy. Italy is lovely and simple...but Holland is an interesting and exciting place and you learn so much and feel privileged to be allowed to experience its bravery, strength and tenacity..

Hun...you make a fab mum... Dont ever feel bad... I'm still terrified at what the future will hold for Tia...years of operations... and she will never be "normal"...but normal is boring.. and I was told she'd never talk properly and her hearing would be damaged forever... I was told she'd loose her fingers when she had meningitis... but it never came true...trust in yourself and your lil girl

 

[MissSara]

Wow thats lovely.
Cried whilst reading that.

It must be hard for you at times and i really couldn't imagine being in your shoes but you do a brilliant job and are a amazing mummy

 

[sam96031]

you are a true inspiration to a lot of us and that 1st post is lovely

 

[Krystal]

Aww Grace your such a wonderful person and so is your little princess Ami. That explanation in the first post is brilliant