Friday, March 7, 2008

Welcome to Holland

byEmily 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.
This is one of the most beautiful poems I have ever read and really does tell the story of parenting a child with special needs.
You see the thing about parents of special needs kids is none of us actually chose to be. Not one of us stood there in the line when children were being handed out, and said, "oh no thank you, it is a special needs child for me thanks"
Heck I even managed to land my flight in Italy, with all the other folk checking out the Coliseum. Life was all going according to plan two healthy boys, ok so having them 15 months apart wasn't quite part of the plan. BUT apart from that life was pretty damn normal....well as normal as it gets when you put your body through two pregnancies so close together.
That was the way it was right up til B's first birthday. He celebrated his first birthday at the beginning of October. By the end of that month we were on a whole different flight - we didn't know it yet, but we were being transported from Italy to Holland with such speed we could have beaten Spock on the Enterprise with the teleport beam!
At the end of that month, A fell ill, he was 27 months old. At first it was like any other childhood illness, the clingy syndrome where we mothers feel that we actually have grown another lump on our bodies because our child is so permanently attached there. Well it wasn't a regular childhood illness, no it was in fact meningitis. Those taking the time to read this, are your kids up to date with all their shots, including those that protect them from meningitis? There is now a vaccine to protect against the bastard bug that sent us down this road, but at the time when A got it, there was not.
In the blink of an eye we were in hospital, this tiny toddler unconscious and very, very sick. He was diagnosed with bacterial meningitis, in his case caused by streptococcus penumoniae. This apparently innocuous bug that causes sore throats, ear infections and sometimes pneumonia. If you are really unlucky, over the final safe guard of defence, the blood/brain barrier it wanders. And voila, you get told your child has bacterial meningitis!
Excuse me, he was what??? Oh but wait these amazing medicos with the bedside manner of a cold bed pan have more news for us. "IF he survives the next 48 hours, he should make it."
"What the f'k did you just say?" my mind was screaming at them, "IF he survives? what the hell does that mean?"
I guess it was kind of lucky we didn't have too much time on our hands to contemplate that one. Instead we were working on the logistics of how this would work, one toddler hospitalised, one only just turned one year old who also needed love, care and attention. And these honchos at MI5, and Special Operations think they have logistics and planning down to a fine art, kiss my a**, they have it easy compared to the military precision of our special op!
We had relatives caring for B during the day, others making meals for the parent on "home duty" to take home so they and B at least got a decent feed. The other parent took to the overnight "sleep" (actually more like fitful snatches of shut eye in a dodgy fold up bed whilst over hearing who was doing who care of the night duty staff). For fourteen days we maintained our bedside vigil.
Oh he woke up but that was about it, there was no balance left at all. In the hospital play room we had to sit behind him lest he lose his balance and topple over on the floor. Not that I was really all that keen for him to even be in the playroom, my mind reeled at the possible cocktail of germs and bugs that no doubt lay in waiting for him on those well used, aka well slobbered on, toys!
There is nothing so soul destroying as looking into the pleading, questioning eyes of your toddler as you stand there and allow a nurse to stick a horse size needle fair into the muscle of his thigh to inject more antibiotics. You can't look away but you see it in his little face, his eyes screaming at you "why are you letting them do this to me? Aren't you the ones that are supposed to protect me?".
So with the balance loss comes this listing to one side. "Is this a normal side effect of meningitis or something we need to look further into?' muses his paediatrician...."ah hello you'd be the guy in a white coat with the initials Dr in front of your name, "what the hell do you think?". Although I have to say his paediatrician was in fact a complete blessing, without Dr M, I don't know if we would have survived this ordeal! I can remember the hospital's resident paediatrician, expressing his concern that A wasn't out of bed and walking around the room. Of course in these situations mothers must do what it is inherent in them to do...totally flip out and freak over all the possible reasons why this hasn't happened. Bless Dr M when he came in and I was climbing the wall convinced I was taking home a seriously damaged beyond repair child......on hearing the words of the resident paediatrician, he said something like "the kid has been unconcious for two days, how the f'k is he going to be walking around his room, f'n text book doctors"....ah you can see why Dr M and I got on just fine....I liked a man who said exactly what was on his mine...and his colourful language, well that just helped disguise mine!
Oh back to the listing we were not happy with that, Dr M, that is. So it was off for a general anaesthetic and an MRI, as if this poor little bugger hadn't been through enough. Well the results showed nothing abnormal, just patterns of what was assumed to be scarring on the brain due to meningitis....what the???? Scarring...what does that mean? Oh probably nothing.....
With those words ringing in our ears and of course an appointment for a hearing test in 4 weeks time, we were ready to leave hospital....oh did I mention the hearing test? Oh yes, lucky you, jackpot week for you! The bug your son has is the one that has the highest incidence of hearing loss as a result of the meningitis, hence your booking for a hearing test....oh just stab me in the heart, we have gone through 14 days of hell, we are taking home this broken little boy, who can't even sit up on his own without our being there to support him and protect him from toppling over...and now you tell me he may lose his hearing too????
Off we went home from hospital with our broken little boy.....completely unaware that at this point, we were already in our seats on our way to Holland...maybe it was just as well, we needed time to regroup at home, in Italy with all our friends and family, before we would be strong enough to realise we had landed in Holland.


Kath Lockett said...

Hi Naomi - what a wonderfully honest post about how you found out about A and what a ride through the wringer it put you all through.

The 1987 'Holland' article is a very famous one. I think it can be applied to a helluva lot of situations that occur in our lives.

I'll be looking forward to reading your next posts. Believe me, blogging them is cathartic and you'll be surprised at how many 'lurkers' (ie read, then bugger off without commenting) you'll have....

Naomi said...

thanks Kath

Just writing that one piece has brought up many things I had forgotten, things that I have remembered since writing that yesterday, that I could have put in, that will find their way into future blogs.

When I started I had in my mind it would be chronological, but now I think it may be what comes to mind to share right now at this point about different things that happened along the way.

ah I can always collate it to chronological later right?? : - )