Tag Archives: intellectual disability

Goodbye, Baby.

Me and The GirlIt’s 4 a.m. I had to write this now.

The absolute worst has happened. I knew it would eventually. Why wasn’t I ready?

After rescuing my Girl from the hospital, I took her  to the hospice. I brought in her nightdresses, her toys, her medications. It gave me time to breathe. And even though this time was officially “respite time,” I visited her regularly. At the end of nine days, she came home.

And things got harder.

Her breathing became laboured. I administered drugs I’m not qualified to administer. I did it under the hospice’s guidance. I contacted them regularly. When her condition deteriorated further still, I knew somewhere down in my heart that this time was different, that our lives were changing forever.

The outcome: I made the painful decision not to intervene in my beautiful Girl’s illness. Wherever her journey was about to take her, I would not stand in her way. What right did I have to continue extending a life of agony, a life filled with procedures and hospitals and pain?

I continued to care for her. I turned her regularly, kept her on a soft diet, kept her as stable as I could. But after only a few days, her condition deteriorated yet again, and after a distressing night, the hospice doctor and my darling nurse Claire came out, and we admitted her to the hospice.

I once promised my Girl that I’d never leave her, that no matter what, she would always come home. Sending her to the hospice felt as though I was betraying her. But standing there right then, what I had committed to in a moment of love, suddenly seemed worse.

The very first time she went into the hospice for respite, I bought her a TV with a DVD player attached. As we said our goodbyes at the end of the visit, she looked up at me, eyes full of wonder, and said, “Nu TV. Thank you nurses.” It was said with such appreciation, that I never altered that belief for her. If she thought the nurses bought her TV’s and DVD’s and whatever, who cared? It made the hospice a wonderful place to visit. Subsequently, with each stay, I’d buy her presents and wrap them up and leave them with the nurses to give to her. I hope she loved them.

This stay was different. It was always going to be different. There were no presents, few Smurf viewings. I played her music, sat by her bedside, talked to her. At the end of my Tuesday vigil, I told the hospice staff I had to leave because I had the dog at home. They told me to bring him in. I did.

The three of us sat for hours each day, listening to music, telling my girl how much I loved her. I did it because I needed to. I did it because I knew that one day soon, I would no longer have that privilege.

On Saturday, I left at  three o’clock. A little earlier than usual. As usual, I kissed my Girl goodbye, I told her that I love her “to bits.” I impressed on her that I’d be there tomorrow, that I’d never leave her. Then I packed my bag, and I left.

Almost the instant I got in the door, the phone rang. The nurses were handing over just minutes after I left, and my Girl had slipped away.

My heart is broken.

I didn’t know what people meant when they say the heart breaks. It feels as though someone has reached in and torn an enormous hole in my chest. It crushes me from the inside. This pain is physical and all-consuming. It’s a pain I wonder if I can bear.

In the past, I’ve suffered panic attacks—waking at night, desperate for time to roll back and let me have even one more moment with her. But this is something else. Over these past two years, and I guess all our lives, we’ve been hurtling towards this enormous moment, a moment that’s stood like some insurmountable wall. We’ve been headed this way, for so long now, that somewhere in my heart, I began to believe we’d never reach it. I began to think this journey, this life, however hard, was meant to just keep going, that I would walk forever with my Girl’s hand in mine.

Now, I’ve crossed that wall, that moment in time, and my Girl has stayed behind, beyond my reach. Her little hand in no longer in mine. I can’t get back over the wall, but I know she’s there, just on the other side, forever caught in the moment that was our lives together.

As I write this, my beautiful Girl is here at home with me. I can look up now and see her beautiful face, the curve of her cheek, the plump of her lips. I’ve had her here for five days. She’s dressed in her best clothes, her hair done, her favourite toys around her. I come into this room to play her music, to talk to her, kiss her, tell her how much I love her. The pain of knowing that today I have to let go is unbearable. I want to gather her up and keep her with me. After today I’ll never be able to hold her, to touch her, to brush her hair from her eyes, to lay my cheek on hers.

I know I’ll always talk to her. I know that wherever she is now, she has no pain, no procedures, no needle pricks, no worries. Her spirit has been freed from a body that bound her to this earth, that served her, but which ultimately let her down. Whereas I want her back with every fibre of my body, I would never want her to experience that pain again. All I can do now is keep our treasured times in my heart, in my memories, and yes, in this blog.

I’ve been the most privileged person I know. I’ve shared in a life that’s been unique, funny, hard, and enormously satisfying. I’ve been granted the opportunity to bathe in her light, to walk in her world, to share in a personality that’s sweet, that’s funny, that’s more loyal than anyone I know. This Girl has taught me lessons that no school, no religious leader could bring. She’s shared her life, her love, and her philosophies with me. I can’t say how honoured I am.

Eventually, I’ll turn this list of blog posts into a book. If it inspires one person to make the difficult journey we have, if it helps one person through the dark days of terminal illness, then our work here is done.

It really is the smallest things that take up the most room in your heart.

I love you, my Darling Vicky Rayner Lea. I love you to bits.




Filed under Coming to the End, Terminal Illness, The Joy of Living With a Disabled Child

Ignore the Screaming, She’s Phobic

I’ve come to the conclusion that if you’re going to have a phobia, it may as well be something completely ridiculous. Otherwise, what’s the point?

I, personally, have no phobias. I know, I’m lucky. I have a few insecurities, a couple of hang-ups, a number of eccentricities – who doesn’t?

But so far I’ve managed to avoid the terrors of phobic disorders. You could say I’m pretty-well fear-free.

The Girl – not so much. She has one dread that’s shadowed and terrorized her all her life:

African violets.

Yes, you read that correctly. And before you go Googling to see whether I’m referring to some deadly triffid-like species of cymbidium native only to New Zealand, I’m not. I’m referring to those cutesy little purple/pink/white flowering plants with the fuzzy gray/green leaves and the short, satisfyingly snappable stems; those tightly-packed rosettes of wooly foliage you find tucked away in the dusty recesses of old ladies’ living rooms.

These seemingly innocuous bundles of sweet, huggable greenery have been the bane of my life.

And for a girl with impaired eyesight, it’s incredible how she spots them skulking amongst the ferns at The Warehouse; hiding on the shelf at the garden center or towering over us from atop the toilet cistern during an unexpected bathroom break at a friend’s house.

All of which induce the kind of mind-altering screams from The Girl that Hitchcock would have been proud of.

I have no idea how such terrors came about.

I grilled Number One Son, the Chukka-boy on several occasions, thinking he’d spent many a babysitting hour tearing around the house terrorizing The Girl with an African violet in each hand. He swears it wasn’t him. He said if it was him, he’d own up to it because frankly how many people could lay claim to something so ludicrous?

Then I thought perhaps her grandmother, owner of several terrifyingly large plants, might have inadvertently traumatized The Girl with her living room greenery. But she was adamant it wasn’t her. On the contrary, she told me she had tried on several occasions to show The Girl there was nothing to be afraid of; that the plants were friendly and lovable. She’d spend hours gently coaxing The Girl’s little hand ever-closer to the pot; speaking in calm and soothing tones while gently bringing her fingers into contact with the leaves; only to have The Girl go practically catatonic and howl inconsolably until she was pacified with an onion sandwich.

Okay, so the fear of African Violets is not the worst irrational fear anyone could have. I’ve heard of people with ‘cow-phobia’, or Bovinophobia, to use the correct
term. And yes, that’s a real phobia. I mean, how many cows would the average Bovinophobic come across every day in the workplace? Unless you’re a farmer, of course. In which case Bovinophobia would be the least of your problems, if you ask me.

I did a quick Google on “Phobias” to find that there are people whose hearts are gripped with terror at such things as: nudity, cats, of liquids or being laughed at; of the night, of birds, of clowns. There are people who are paralyzed at the thought of all things French, if you can believe it.

But African Violets? I mean, seriously?

So when The Girl’s grandmother sadly passed away a couple of years back, and her beloved houseplants were divided amongst friends and family, guess what little keepsakes we got to inherit. That’s right, two – I repeat, TWO African violets. So now we have one African violet sitting in the dining room overseeing goings-on at the dinner table, and a second in the main bathroom ensuring no one abuses the facilities.

So that’s two portals of terror in our house.

But take heart, my trembling little bundle of nerves: when your worst nightmares threaten to overwhelm you; when you find yourself overcome with panic at the sight of the bathroom foliage, or the hideous specter of an African violet casting its shadow of dread across the dining table, just remember – it could have been worse.

They could have been French.


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