Katie McCarron – theft of joy
The trial is over and the verdict out.
As a member of the “Autism Hub” we were asked to set aside a day in memorial to “Katie,” so that the memory of “Katies” brief life remains with us.
There are many scholarly writers to address sadness, anger and disbelief but I'm not much of a political animal. Autism is part of so many people's lives and public awareness grows daily. So much of it is a different way of being or thinking. I may not understand it very well but then I don’t understand Alzheimer’s either.
Autism has become very ordinary to us as a family and certainly not newsworthy. So instead of berating the ugliness of the world, today I choose to celebrate the ordinary, as autism doesn't exist in a vacuum.
I sit in the doctor's waiting room with my eight and a half year old son on my lap and a nod to the receptionist. She sits behind frosted glass wearing a military jacket, purple hair and a smile that could melt ice. She clatters away at a manual typewriter surrounded by stacks of patient files. My son's head burrows into my arm pit trying to disappear. A weekly visit to the wart doctor is an trial added burden that we could do without. These days he is aware that his behaviour is socially inappropriate, but he doesn't care right this moment. I stroke his silky hair and chat. “Ooo look at that big tree out there! Can you see all those squirrels scurrying up and down the trunk? It's quite a traffic jam.” He pays no heed, wrapped up in the anticipation of imminent physical pain. I glance at the calendar on the wall and count backwards to the date when my eldest daughter needs to go and have her Malaria parasites counted again.
My mind fills again with my father's graphic descriptions of diseases in the Tropics during his long Naval career. The memories of his youth are clear and sharp, but Alzheimer's has dissipated the here and now. I peek at my wrist watch to figure out how long we have until Wednesday afternoon's double session of speech therapy and occupational therapy for the boys. I run down my list of current occupational therapy goals to give to the therapists, will they really be willing to help with the hair washing life skills? Maybe next year he'll learn how to manipulate that dastardly pencil sharpener?
I need to make another dental appointment for them all, as we missed the right day due to scheduling conflicts and an unexpectedly long trip to England. I remind myself to email my new sister in law and assure her that her new husband's heart murmour is a genetic glitch, that a stroke or heart attack are probably still light years away. I scribble on the back of my hand to remind myself to pick up spouse's prescriptions, diabetes and high cholesterol. How will I ever get the bed stripped, washed and re-made before tonight after yet another accident?
The homework schedule is backed up due to an unexpected bonus, a rogue moment of spontaneity that bowled us over, instigated by the chance hearing of a couple of bars of a pop song. My son climbed on the counter to turn off the radio, but not before the little one jumped off his chair to break dance on the floorboards. The break in routine, also broke the thread of concentration. “Didya see him mom? He's actually quite good,” she comments with genuine surprise. “Hey do it again, why dontcha?” Not only did he listen to her request, but willingly obliged, a silent re-run. She joined him on the floorboards, “teach me why dontcha, come one, you can do it?” They all joined in, all three of them, a hybrid cross over between Cossack dancers and inebriated rabbits on ice.
I wince to recall my international telephone call home to my dad. It's a reaction grafted onto the guilt of a giggle. I wanted to check to see how my mum's hysterectomy surgery went, eight hours ahead of where we now, marking time in the waiting room. “Well you have to understand that it was a big operation for your mother at her age,” he soothed. “The hospital haven't telephoned to tell us anything or course, they're an absolute shower.”
“Did you go up to visit dad?”
“Visit?”
“Visit mum in the hospital?”
“Who?”
“Mum.”
“Oh no. She won't be up to having visitors until tomorrow, maybe. A lobotomy is a serious business you know.” I blanch and pinch my nose to stop the snort's escape.
As my mother would say 'life is simple when it is boring.' The niggly little trials and tribulations of everyday life, can drag us down if we let them. Few of us enjoy the life we believe we so richly deserve or anticipate.
I can't tell you what kind of a life style we 'ought' to have had, I can only tell you a little bit about our lives with autism. Whatever life you have, be sure that if you expect misery, it shall surely find you. For my own part, I much prefer our own boring little version to a more newsworthy alternative.
All anyone wants is a long life time of the little ordinaries. No-one should steal away the ordinaries, both Katies own and the love she shared with her family.
I wish for you, a very ordinary day of life.
January 17th, 2008 at 11:55 pm
We are having that here, or rather ending one day (it being almost 2am) and readying for another (8.30am dentist appointment and malfunctioning in both bathrooms due to an object placed in a certain modern appliance). I just went in to lean my forehead on Charlie’s strong back: He is wrapped tight as can be in his fleece blanket. The tupperware with the “dentist kit” (which we have been practicing with) is ready at the door. A therapist is supposed to be there with us, provided his very pregnant wife does not go into labor……..
Life is good and happily, haplessly, harried—-a marvel of madcap follies and oh no’s and warm and loving times, just like the ones you always tell of here.
January 18th, 2008 at 1:13 am
Ordinary days, with ordinary things are the best.
PS Katies links are broken. Thought you’d want to know. The first gives a small picture of the link button and the second gives a 404 not found.
January 18th, 2008 at 5:46 am
What a kind wish. And what a moving post.
January 18th, 2008 at 5:52 am
What is normal anyways??
Jan’s been a long month – do over??
– but none of it is autism’s fault. Unless you want me to nit-pick those tiny pieces that… just might… be directly linked to it.
Sheri
January 18th, 2008 at 6:10 am
I think of Katie a lot. What a lovely post. A long life of the little ordinaries….bliss.
January 18th, 2008 at 6:47 am
Lovely Maddy.
And lovely to picture the dancers- what a moment of bliss.
January 18th, 2008 at 6:51 am
*very much appreciates routine*
January 18th, 2008 at 7:10 am
Lovely, Maddy. Yes, a life full of ordinary days and moments…no matter what “brand” of ordinary one has.
And you are a better person than I…I would have fallen off my seat not only snorting but howling with laughter at the lobotomy statement! God bless your dad.
January 18th, 2008 at 7:22 am
I so wish i could make an international phone call to my dad. I wonder how much BT would charge to Heaven! Isn’t it funny how the kids know when behaviour is inappropriate yet they find it difficult to stop!
Best wishes, Crystal xx
January 18th, 2008 at 7:28 am
wonderful post. There are days where I need to know I have a little extra stress in my life, and that I am not a failure. It’s not the autism or disability, but the windows society keeps trying to force me to look through to see my kids, the doors society keeps trying to make me walk through to be their parent. But most days, our family is our family, for good and for bad, for every ordinary purpose.
this really hit home
January 18th, 2008 at 7:57 am
ordinary can have its own set of exciting…
January 18th, 2008 at 8:24 am
What a pleasant reminder. Thanks.
January 18th, 2008 at 8:46 am
What perfect sentiments! Loving our boring little version of life here, on this very ordinary day. Take care.
January 18th, 2008 at 9:31 am
Thank you for the healthy dose of perspective. I held sweet Jack’s warm little hand as we trudged to school this morning. It felt so good. The ordinary is so amazing.
January 18th, 2008 at 10:14 am
Great post! There’s nothing wrong with ordinary… and some people’s versions of ordinary are different from others
January 18th, 2008 at 11:49 am
You’re so right–ordinary is quite wonderful.
And I will tell you, sometimes I think homework is vastly overrated. I’m becoming a rebel in my old age…
I think the breakdancing on the floor (!) and learning/teaching each other is much more important than any ‘paperwork’ that any teacher could possibly assign.
January 18th, 2008 at 11:57 am
I love your last line.
January 18th, 2008 at 12:24 pm
Maddy, this was lovely.
January 18th, 2008 at 1:33 pm
Old Chinese Curse: May You Live In Interesting Times.
I’ll take the hugs and squishes and cuddles. Those are the big things. Everything else is trivial.
January 18th, 2008 at 1:45 pm
living ordinary lives- can get rather exciting (or tiring) at times
welcome back.
January 18th, 2008 at 2:17 pm
An ordinary day always works for me …
January 18th, 2008 at 2:46 pm
A somber “hear, hear!” That’s my favorite thing about you, Maddy. You always manage to find the precious in the ordinary. That reminds me, I need to go give my boys big hugs. Again.
January 18th, 2008 at 3:59 pm
I am all about the ordinary life. I like my drama….in the movies.
January 18th, 2008 at 4:16 pm
Too often we miss the beauty present in the ordinary.
Thanks for the reminder.
Joe
January 18th, 2008 at 7:24 pm
I loved this, Maddy. I too love the boring old ordinary.
Thank you for reminding us about Katie.
January 18th, 2008 at 7:47 pm
Maddy: Again, you have a gift with communicating what alot of us feel on your blog.
You rock
January 18th, 2008 at 8:53 pm
Ordinary (at least deadline-free for a bit) would be lovely…!
January 18th, 2008 at 9:33 pm
Even normal days are very special.
The simple things are what truly make life worth living.
January 18th, 2008 at 10:16 pm
Maddy this was lovely, The last line was absolute money.
January 18th, 2008 at 10:49 pm
The poignancy here–holy moly. I am so much with you and in your brain. We have so much that is different, but we are so much the same.