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Jacqui Darlington: No one gave me a job description

Jacqui and Joshua - hugWhen Jacqui Darlington’s second child was diagnosed with Down’s syndrome, she found herself in a brand new role… with no idea just what it would involve.

Many of you will have read the story/poem or seen the film ‘Welcome to Holland’ and that was exactly how I felt when I gave birth to my son, Joshua, and was told he had Down’s syndrome. I had planned everything down to the smallest detail as this was my second child… except for what to do or how to feel if things did not turn out as expected. No one gave me a job description.

Once I had dealt with the shock, with having to tell family and friends and the number of visits to the doctors and hospitals etc, I eventually got into a routine – even to the point that I was going to go back to work. However, things changed when Joshua started school and I had to deal with a whole new set of rules for this game. No one gave me a job description.

Eventually I went back to work part-time, which was great as I was around to take both my boys to school and could pick them back up again, and life went on normally (if that is what you call it). At the back of my mind, I believed that things would get easier the older Joshua got: Joshua would become more independent, speak and do exactly what his peers did when they did them.

How wrong could I have been! No one had given me a job description.

“I had to deal with a whole new set of rules for this game”

Joshua started college full time – but full time was not what I expected and not like school. He attended three days a week, with ‘progress weeks’ off every term. I struggled to maintain a home, be a mum, be a carer and have a career for just over six months before admitting that this situation was not working. I had become ill with the stress of it all. No one had given be a job description.

Reluctantly I gave up working to become a full-time carer but, with that, I had to give up our home as I could not afford to keep it with no income coming in. This broke me in ways I never thought it would. It still brings tears to my eyes. No one gave me a job description.

“Joshua is and always will be my beautiful handsome son”

Jacqui and Joshua - cardsJoshua no longer attends college but does various things on various days but I feel that I am more of a chauffeur/companion/nurse/interpreter than his mum. Even though Joshua has PAs, the allotted funding does not equate to the needs he has.

I have so many happy memories of Joshua growing up, including him walking at two years old when I was told he would not walk until he was five, and, more recently, him 'telling me' he was going Tesco for batteries only to spend £20 getting cheese and sausage rolls. I could go on and on...

Joshua is and always will be my beautiful handsome son who I will continue to love, cherish and adore… even though I never got a job description. But then again, this is no ordinary job.

For those of you who don’t know the poem that Jacqui’s referring to, we’ve shared it with you here:

Welcome to Holland

By Emily Perl Kingsley

c. 1987 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.

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