Blink. Blink. Blink. The cursor in Microsoft Word flashes at me from the blank page. After staring at it for a while it takes on this urgent quality, like it’s an exclamation mark. Panic! Panic! Panic!
In writers’ circles we like to say that the blinking cursor is the heartbeat of God.
I have nothing to write about raising a special needs child today. Again. Well, nothing ‘shiny happy people-ish’ to write, anyway. Which is why I’ve hardly posted anything in these last few weeks. It’s all doom and gloom and more gloom, and I’ve promised myself I won’t post another depressing write-up.
I’m failing already, aren’t I?
Well – I might as well barrel on ahead then. Get out your umbrellas, folks, and follow me behind the scenes.
There’s no lack of material; plenty to write about the goings on in our growing family. But the really juicy bits are actually brutal stuff to read and it’s taken me just about the whole of 2012 to come to terms with some of it.
Like the fact that my mother didn’t actually die in a tragic car accident when I was a baby – she took her own life. In a car. And it was no accident. This newly acquired knowledge has un-made me in some basic way and I just can’t seem to put the pieces of me back together again.
But isn’t that what we mommy bloggers are? Humpty dumpties? It’s all: “I’m on Xanax, who hoo!” and “My ex is a piece of shit – yeehaw!” and “My nipples are inflamed to the size of mulberries coated in molten capsicum lava – whoopdeedoo!”
(Show me a cheerful mommy blog and I’ll show you one boring read.) I guess we all just want to know that somebody out there is going through the same thing that we are.
But wait, there’s more!
This pregnancy is still bringing me little joy, not just because I start every day vomiting up water and bile, but because I’ve popped out a baby before and I know damn well what we are in for when I bring my ‘bundle of joy’ home from the hospital. (First-time moms, strike up a conversation with me at your peril.) Fun fact: do you know that once we have three kids, between Travis, Ryan and the new baby, we will be changing up to 18 nappies a day? 18 NAPPIES, PEOPLE! EVERY DAY! We should call newborns ‘bundles of poop’ to be more accurate. The ‘joy’ part only kicks in when babies start sitting up by themselves and you can play peekaboo.
(Pickle, when you read mommy’s blog one day about how I felt when I was pregnant with you, I hope you’ll forgive me for being such a grump.)
Our finances are stretched to the max and then some. For the second year running I’ve had to shelve my dreams of growing my business bigger in favour of focusing on stability and family (goodbye fancy offices, hello another 365 days of two-minute noodles).
And there have been times that our marriage has been held together by little more than tape and string. I’ve said it once, and I’ll say it again: a lesser man would have left the boys and me years ago.
I never write about the devastating pressure that having a disabled child places on your closest relationship – and I should, because I am doing the families who are going through the same thing, and who read this blog, a great disservice by not elaborating on what The Husband and I go through – but I have made a promise to keep this part of my life off limits on the Internet machine, and I intend to keep it.
Which brings me to Travis, our Lionheart. And this is the hardest part to write.
This year, we will be taking the first, terrifying steps towards finding a long-term care solution for our first-born. And let me be an adult and say the words: ‘a home’. I feel ill just typing that. It’s reached the point where we are starting to see what everyone close to us has known from the beginning, and has tactfully tried to tell us before I yell: “Over my dead body will we put Travis in a home!”
We can’t do this alone. Every year it gets harder, and the psychological, emotional, financial and even physical damage becomes worse. And every year Travis gets heavier to carry, angrier and more aggressive, much stronger (I predict by the time he is 10, he’ll easily be able to break my arm in a rage), louder, more ‘shut in’ to his private world that I still can’t begin to understand. Mentally, he is still around the 18 months old mark.
Ask any special needs mom what her dream for her child is and she’ll say: independence. I have long since let that dream snuff out. Travis will need 24-hour, hands-on care and supervision for the rest of his life – and everything else will come second to that.
But, and this is the HEART OF IT ALL…
The thought of not being able to kiss my Lionheart goodnight, of him not being under my roof… leaves me a sobbing, irrational, hysterical (and let me put this out there – suicidal) wreck of a mother. How do we ‘live lionheart’ if our Lionheart is not living with us? How do I live with myself?
So we move towards the end-goal inch by painful inch. The first step: respite care.
What is it? Apparently there are places where your Lionheart can spend the night, or the weekend, or even the holidays – so that you as a family can have some ‘respite’ from the care you have to provide.
I had never heard of respite care until June last year when we finally confessed to Trav’s neurologist how badly we are cracking as a family. Instead of telling us to man-the-fuck-up, she said: “Frankly, I’m surprised you guys have held out this long.”
We left with a phone number scribbled on a torn-off strip of paper, which has been tucked into my purse ever since.
This year I intend the focus of this blog to be very much on our journey to find Travis the care he needs. It might take months. It might only be phased in over many years. Who knows: we might find that this is the wrong direction entirely! Please Big Guy Upstairs, let this be so.
Because I don’t know about you, but when I think about ‘a home’, scenes from ‘One Flew over the Cuckoo’s Nest’ and Nurse Ratchett come to mind. Is this true of South Africa’s facilities for the mentally impaired? We’re going to find out. I will be researching, visiting, and snooping about.
I will dish up an honest account that will be as hard for me to write as I’m sure it will sometimes be for you to read. I’m bracing myself emotionally for the negative comments, especially from other special needs families. I doubt there is anything anyone can say that is worse or more damning than the thoughts I torture myself with at night. I am damned if I do and damned if I don’t.
It starts with that phone number. I am calling it today.