Wednesday, February 08, 2012

Of laughter, books and tubes

When Christopher laughs he has this belly laugh that is full of mischief and mirth.

When Andrew laughs it is the uninhbited laugh of a toddler and anyone in earshot is forced to smile, if not laugh too.

When Anna laughs it is like a tinkling bell.

When Erin laughs it sounds so grown up now days.

When Billy laughs his whole face breaks into a grin so big it's a wonder he doesn't fall apart.

When Kaylee laughs it cracks me up every single time - with mirth and delight.....but I have to explain to onlookers that she is, indeed, laughing.

She squinches her eyes shut and her mouth opens and the corners of her beautiful lips move sideways toward her ears.  Her cheeks bunch up, dotted with dimples.  And this noise comes from her that sounds a little like an adolescent goose or the large blue bird in this clip

Onlookers could be forgiven for thinking that she is crying or in pain but when you know her like I do, you know it is a honk of pure, unadulterated joy.  She did it this morning when I was kissing her hands and neck and it was like she was saying to me "Mummy, you are SO FUNNY!!!!!  Seriously Ma, have you thought about taking this act on stage?  You are HILARIOUS!!"

People are like books.

Some are best sellers with glossy, inviting covers and clear, accessable language.  A page turner that you can enjoy in a sitting then go back and read through slowly enjoying things you missed the first time around.

Others are like my collected works of Shakespeare.  The outside a bit banged up, the print a little too small, the language a little strange in places and requiring quite a few readings to even skim the surface of the stories within - but so, so worth the time and effort.

Kaylee, and so many people in the "special needs" category, are a whole genre of their own.  Imagine picking up a book and looking at the title only to find it is written in Russian.  Flipping through to find a conglomeration of Japanese Haiku, Ancient Greek chorus, Hebrew prose, Egyptian Hieroglyphics and beautiful Arabic calligraphy.  Intimidating.  Inaccessible.  Intriguing.  No one expert can explain it all.  She doesn't even share an alphabet with me.  I have to build my own Rosetta Stone so I can learn to read my girl.

Yesterday I was kneeling on the floor next to the wheelchair of a beautiful young girl with CdLS and I honestly did not know where to start "reading" her.  She is almost 12.  She has four words and a few signs.  But I dove in.  I asked her parents questions, I looked her in the eye and smiled when I wasn't sure what to say, I made an effort.  And each time we meet I will learn a little more, understand a little more.

I am learning that of anyone parents and carers understand kids with special needs best and usually are more than happy to help other people understand them too.  It is not the young child that barrels up and shouts "Hey, what's that thing in your baby's nose?" that offends - it is actually more hurtful when the embarrassed parent hushes the child and rushes them away.  While admittedly it gets tiring to answer the same questions over and over again - and there are moments when people let ignorance and stupidity out of their mouths without thinking - someone wanting to put the effort in to understand my complicated and intriguing little girl - even a little bit - makes me happy.

Parents, siblings, carers and friends act as bridges to help Kaylee and kids like Kaylee understand the world and be understood.

For this reason, I will be writing a series this week in honour of Feeding Tube Awareness Week to help others understand this surprisingly common aspect of the special needs world.

So they won't be frightened by the seeming complexity and and strangeness of a tube taped to someone's face or hooked up to someone's belly.

So they won't glance at the front cover and move quickly on to an easier read.

So others will learn to know when she's laughing - and laugh along too.


Michelle said...

We have a mutual friend and I've been following your blog since your first long stay at RCH last year (followed a link from Bec's facebook). I'm not much of a commenter (plus you don't know me at all!) but I felt compelled to say something this time.

This post is beautifully written. Thank you for sharing.

I'm a genetic counsellor and always interested in learning about the perspective/lives of clients beyond the contact we have in the clinics and hospitals. This post, I am sure, will help people to stop and think twice about the children with special needs whom they meet - and will hopefully encourage them to pause and get to know them a bit better. There is so much richness to found when we do!

I'm also so pleased to hear you've been able to meet a family living the CdLS journey. I hope that has been helpful for you :)

Jess said...

Thanks for the comment Michelle, I am glad if what I write does help someone.