Category Archives: The Early Days

The Then and the Now.

Dead Cat

Dead Cat

Some years ago, I had to attend a series of chem. labs to complete the practical requirement of my extramural course: Organic Chemistry:101.

Yes, you read that correctly—Chemistry! Let me tell you, it takes a special kind of stupid to do any kind of Chemistry by correspondence. At the time I was raising two children on my own, working a part-time job, and furthering my education with extramural study in Chemistry, Biology, Maths and Physics. That’s no walk in the park. I look back now and wonder how the hell I ever did it. It just shows that with a good belt of determination, and just the right mix of insanity, you too can engineer your own near-burnout experience.

Fortunately, I still had enough youth on my side to get me through the pain. Unfortunately, that youth didn’t always serve me so well.

So there I was, on campus, living the dream of the returning student, soaking up university life and adding another string to my bow so I could leap up that corporate ladder (to mix metaphors), when one evening, after a particularly gruelling day of labs during which I found myself reaching bare-handed to catch some dripping sulphuric acid so it wouldn’t mark the bench (this was about the time I discovered chemistry wasn’t for me), I was sitting in the common room and enjoying the company of my peers. I have to admit, having left school the nanosecond I turned sixteen, I was somewhat overwhelmed, perhaps even a little intimidated, by the level of academic achievement I’d found myself in—until, that is, the moment when one of these geniuses pipes up and says, “Wanna hear a joke?”

Of course, the immediate response from the entire room is, “Yeah, go on, tell us,” and we all settle in for the impending chuckles.

So he starts, “What do you get when you throw a mental retard into—”

“—excuse me,” I interrupt, hand in the air like a kid in kindergarten, “but I think I should warn you that I have an intellectually handicapped daughter.”

A stinging silence stretches out across the room. The temperature drops a couple of degrees. The atmosphere crackles with discomfort and the almost indiscernible sounds of non-breathing. Sly glances flit around.

Otherwise, nothing—maybe crickets. Even then, I’m not sure.

And the guy continues with the joke.

As the single voice of dissension—I swallow back the lump in my throat and look around at my fellow academics for support. Heads go down. A throat is cleared. A few uncomfortable sideways glances flick my way.

I’m mortified, humiliated. My heart flips into double-time while my face blooms scarlet.

So, you know what I did?

Nothing.

That’s right. I sat there feeling a thousand tiny needles prickling my skin as the pain of fifteen years of battling crappy attitudes and off-colour jokes, and imbeciles who never think comes flooding back to haunt me. I said nothing, did nothing. There might have been a few pitying looks from those in my class. A couple of people might have been going to speak. But they didn’t.

Not one person came to my defence. Tears burned in my lower lids. I blinked them back. I had no intention of giving anyone the satisfaction of seeing me cry.

After a suitable measure of time, people relaxed, the conversation picked up as if nothing had happened, and I scuttled out of there as if I’d done something inexcusable.

I look back now and wonder what the hell was going on in my head. If this happened now, I’d throttle the guy. I’d tell him exactly what I thought of his puerile joke and his twisted sense of humour. Then at the first possible moment, I’d lay a complaint against him with the university. I’d have his sorry ass kicked so hard, he’d have graduated before he came down. He came there to learn—that’s one lesson he’d take away that he hadn’t expected.

Then I’d walk out with my head in the air.

And you know what? I am almost one zillion percent sure that every person in that common room would have told the guy what they thought, and walked with me.

So what’s the difference between between then and now? I could say that maturity has lent a hand—which is probably true.

I could say that I’m no longer intimidated by people with letters after their names and certificates on their walls—which is also true. I could say that I’m not worried what people think, that I accept that I’m weird, and that rather than bother me, I embrace it. Yeah, maybe that’s stretching it.

The truth is these days I have a swagger I didn’t used to have. I wear my role as the nurse, carer, advocate, and mother of a disabled Girl with pride. I have a level of surety about my place in the world that I didn’t have back then. It’s made me care less about what people think, and care more about what I think. But that’s only part of the picture.

It’s not just my own acceptance of what I am or who I am. It’s acceptance that’s come from my relationship with my Girl. It’s a growing acceptance of me and my Girl by our friends, by our acquaintances, by all those we come across in day-to-day life—both online and off; by the community and by society as a whole.
Once upon a time, I felt as though I was defined by my girl; that because she was “broken” that I, by association and by blood, was also looked upon as “broken.”

These days, I see myself quite differently. These days, I’m defined by my girl, but not as a victim. I’m the mother of a disabled young person. I have an enormous responsibility. I have the full responsibility for her life, for her freedom, for her dignity. She cannot control events in her life; she cannot make decisions that affect her life. That’s my job. And hell, hasn’t she got enough battles to fight?

So how did I undergo such a shift—such a mind-flip? How did I go from meek, unassuming broken Me to fist-fighting, desk-pounding, determined-to-make-my-Girl’s-life-the-best-it-can-be Me?

Lemme tell you, it’s taken some time. But I’ve been blessed.

I’ve had (and still have) friends who have trodden these very same boards, and lost their young ones way too soon. I have friends I can call on in moments of terror, or stress, or worry, or horror, or anguish. I’ve chosen my “Warrior Friends” because they’re smart and knowing and wise, but never short of a good bout of outraged indignation on my behalf at the slightest provocation.

I’ve been blessed to know the beautiful young people from my Girl’s program. These are young people society sometimes still sees as the “damaged” and the “broken.” But I’ve seen their strength. I’ve seen their courage and their love. These are young people who have friends, and loves, and lives, and sorrows and everything you and I have (or maybe don’t have). Yes, they’re different. Yes, they have challenges that you and I would crumble under—and yet, these are people who are happy and accepting of things most people wouldn’t put up with in a million years.

I’ve been privileged to know their teachers—people who show the utmost respect for those in their care. They come gladly to work with people who are physically challenged and frail and intellectually different. These teachers look upon their students as friends, as peers, as colleagues. There’s an atmosphere of mutual respect; of love, and determination to make every day count—to share in their joys and their sorrows and their everyday achievements and successes—regardless how small.

I have had the benefit of all these wonderful, fabulous, positive people in my life. I owe them more than they could ever know. And I thank them.

I look back now over my life, and realize without hesitation—that the only person within this post who was ever truly broken …

… was the guy who told that joke.

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Filed under Parentlng alone, The Early Days, The Joy of Living With a Disabled Child

Coming, Ready or Not

The Girl at six months in her doll's dress.

The Girl at six months in her doll’s dress.

The Girl was 3lbs when she was born. There was a great deal of speculation and, I suspect, a certain level of guarded excitement in the hospital genetics department when she came along. They hadn’t seen anything like this. They took samples of The Girl’s blood, The Husband’s blood, my blood. They screened it, tested it, did whatever, checking to see whether maybe one of her parents was responsible.

They came back with nothing.

Next, they sent out for photographs of her chromosomes so they’d have some idea of what they were dealing with. Thirty-one years ago, you didn’t get your DNA snaps overnight. Thirty-one years ago, you had to send overseas to get them.

It took six weeks.

When they came back they were gray, fuzzy monstrosities that looked like x-rays of ribs taken by the junior radiographer on a bad day. They didn’t give the information you get today. What they did tell us was that The Girl had a number one ring chromosome – a mutation in one of the DNA strands where the top and the bottom of the chromosome had been knocked off, and because they were ‘sticky’ they closed together to form a loop.

A condition reported in only six other cases. None of which were in New Zealand.

That alone told me that no budding medical student in his right mind would be basing his thesis on The Girl’s condition anytime soon because everyone knows it’s prudent to base your thesis on something relatively common and well documented. That way there’s plenty of information at hand, and tons of willing parents to interview.

After one week in the hospital, I had to go home without her.

Snow fell. The world suddenly became a bleak and foreign place. Halfway home, The Husband broke the tense what-the-hell-do-we-do-now silence, saying, “We could just leave her there.”

Without even looking at him, I said: “We’re not doing that.”

And we drove on.

I have no idea whether he was serious. I only know that after a week of hell – of discovering the child I’d been expecting never existed; that in her place I had something broken – something that I didn’t want people to see for fear of their reactions; that after a week of feeling like I’d been thrown into a tornado I couldn’t find my way out of, a week of no sleep, no appetite and a diet of hourly adrenaline blasts – there was one fleeting moment in that car when the possibility of walking away – of turning my back on all those terrors, all that pain, all that heartache, looked very attractive.

That moment passed in one split second.

At home I fell back into my daily routine feeling hollow and lost. It was as if leaving The Girl behind in the hospital had torn a huge hole in my chest; as if every breath escaped out between my ribs, leaving me perpetually sucking in air; perpetually strained.

Depression set in. People avoided me. I lost weight, I lost my friends, I lost hope.

Twice a week, I rallied enough energy to catch the 8 am bus for a two-hour trip back to the hospital to see The Girl. At 4 pm, I turned around and caught the bus back again.

Number One Son spent those days with a friend. I don’t remember telling her how much that meant to me. I hope I did. If I didn’t, I hope she knows.

On the days in between I froze my milk in a jar, wrapped it in brown paper, and took it to the bus depot where the driver gave me a sympathetic smile, then tucked it safely down beside his seat where it stayed until he delivered it to the hospital.

After two long months, sixteen or so bus trips, endless hours of staring into an incubator, and several hundred miles gazing out a bus window at a frozen landscape I was beginning to hate, The Girl finally came home.

She was 4lbs.

Was the hard part over? Hell no.

Fortunately, I had yet to discover that. I got on with life and tried to make everything better. Did I regret my decision to go back to the hospital and get her? Not once.

Were there moments when I wanted to run away and leave it all behind? Numerous!

These days I look at my Girl and I see someone beautiful; someone sweet and funny and loving.

It took me twenty years to come to that, to forgive myself, forgive The Husband and find the way forward. It was worth every minute.

So what did I learn out of all this? I learned that it doesn’t matter what decisions you make along the way; what road you take, when you hit that fork in the road, make sure your choice of path is one you can live with.

After that, don’t look back. Because whatever you did, whatever you chose, it was the right decision at the time. And no one lives your life but you.

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Absolute Beginners

Thirty-one years ago, the world I lived in was a different place. There was no internet. Computers were the size of small houses, and telephones were all stuck to the wall.

I lived in a small town in the South Island of New Zealand when The Girl came along. Thirty-one years ago withdrawing money from a bank account from any distance required a phone call to your local branch during which the teller would describe, yes describe! your signature. Hilarious but true. Anything other than a local phone call was hideously expensive and going anywhere by plane was a luxury. It was a world away from my family in the North Island.

The Girl made her debut on June 30th  1981 at Dunedin Hospital – a two-hour drive from our home. You’d think such a tiny parcel at 3lb would be a doddle. You’d think she’d pop right into this world like a cork. Not so. When she emerged, The Girl had been packed so tightly for the past nine months, her tiny feet were folded up and pressed so hard into her shins, she had indents where her toes had been.

From the second she arrived, the buzz and the smiles and the flurries of congratulations from the nursing staff were ominously absent. There was no flood of relief, and baby cuddles; no excited phone calls with good news or cigars handed around.

They were replaced by muffled conversations and the chill of concern, and before I even got to see her, The Girl was whisked away and spirited off to an incubator. All they would tell me was that she was tiny and she was going straight to the Special Care Unit. I wanted to see her, to touch her, hold her; to make sure she was okay. I wanted reassurance, an explanation. It never came. Because right then, there wasn’t one.

The first time I saw The Girl, it was through the glass of the incubator. I wish I could say that I loved her immediately, that I saw straight past her differences and that I accepted her along with all her problems.

I didn’t.

What I saw was a strange little person fighting for her life – skinny little limbs, long thin strands of hair, low-set ears, a broad nose. She was missing the bones in the bases of both thumbs; the left one left dangling by only a thread of skin.

Day after day I sat there in front of that incubator, staring at her, willing her to be beautiful, willing her to be the perfect child I’d been expecting. I thought maybe, just maybe if I stared long enough, compared her to the other babies, examined her closely enough; that if I asked the right questions, made the right noises, then eventually, I would see what I hadn’t been seeing; that everything would be okay and that I was worrying for nothing.

I stayed in the hospital for a week. I had two visitors. Well, three if you include the young intern who drew the short straw to give me the pep talk. Let me tell you, if he was the designated Cheer Squad, somebody on the admin staff really needed to revisit their job description or maybe just check the roster. He came into my hospital room, introduced himself, then sat on the end of the bed, and after about six of the longest, most silent minutes of my life, he said, “Have you got any questions?”

Any Questions? Are you kidding?

I had sixteen zillion questions. I had questions that he probably wouldn’t have thought of. I wanted to know, What the hell is wrong with my baby? I wanted to ask, Why did this happen! How it happened? Whose fault was this? Did I do something wrong? And that was only the warm up lap!

Once my mind got off the Ferris Wheel of confusion and slid back into gear, I said, “So what’s going to happen?”

He looked mournfully across at me, shrugged, and said, “I don’t know,” then went back to looking like he wanted to vanish in a puff of smoke. Looking back, I often wonder whether I didn’t ask the obvious questions at the time because I didn’t want to know the answers, or because I did know the answers and didn’t want to hear them.

Eventually, he got up and said, “If you’ve got any more questions, just call.” And he left like his heels were on fire.

So that was it. That was the counselling session. But it was free!

For the whole of the following week I was exhausted. My nerves felt like I’d been electrified because a constant buzz ran through me like a radio channel that wasn’t quite on the station. I couldn’t eat, I couldn’t sleep. The whole time, I felt as though something had become lodged in my chest and I could barely breathe.

But through all the hopelessness and the disappointment and the horror, was a driving, overwhelming need to stay with this girl, to make a place for this tiny person – to make everything okay. I didn’t know how, or what it would take. Nature is a wonderful thing. You only have to be a parent to understand that.

I eventually got past the sizzled nerves and the brick in the chest, just in time to slide into the Anger stage of the cycle. I’ll go into more of that later.

Finding acceptance and happiness took the best part of twenty-two years. Could I have shortcut the process? I’m absolutely sure I could have. But, that’s what this blog is about.

But for now, do me a favour. If you know someone out there whose life had been turned upside down by the birth of a child less perfect; or whose life has been frighteningly and irreparably changed through accident or illness or any of the traumatic events that can touch and change the course of our lives in an instant, here’s my advice – don’t tell them it could be worse. Don’t tell them God chose them for this burden. Don’t tell them you understand how they feel and it’ll get better. And please don’t try to convince them this is some kind of master plan – even if that’s what you believe.

Tell them you’re there for them. Hold them close and tell them they’re not alone – that there’s a world of wonderful people out there who really do care, and even though you cannot imagine what they’re going through, tell them it’s okay to be angry; it’s okay to be frightened, it’s okay to grieve. Tell them that, yes, life is friggin’ unfair sometimes and no, it shouldn’t be this way.

Then tell them you know of at least one person who has stood in their shoes, who felt that despair, who knows that pain.

And tell them I got through it.

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