Monthly Archives: August 2014

Starting Over

MessagesIt’s two weeks today since my beautiful Girl passed away. I wish I could say it seems longer, but it doesn’t. Time that seemed to stretch on forever is now compressed into tiny blocks barely visible in the rear-view mirror. And a strange phenomenon has occurred.

I’m living in two worlds.

I can’t say when I first noticed it. My heart broke when my Girl left me, and the pieces now seem to inhabit two entirely different realities.

The first is a world in which my Girl is still with me. I call her name, talk to her, put her music on for her. In this world, my Girl is at her program, laughing and singing and dancing with her friends. She’s in her room watching her Smurfs DVDs, sorting through her CDs, or playing her games. Alternately, I tell myself that her absence is explained by a spell of respite at the hospice. It’s an oddly comforting world that’s all inclusive, that contains all the memories, all the past, all the fun, the laughter, and the togetherness that we had. In this world, she’s still my best friend. She still holds my hand. She’s still the beautiful person I care for, look out for, fight for; the person I nurture and love. And it doesn’t matter that I can’t see her because somewhere, just around the next corner, I’ll find her waiting for me.

But living in this world has isn’t sustainable. While the music plays and I revel in the familiarity, I know the slightest ripple in the facade will break the spell. When that happens, reality kicks in.

Then I’m thrown into that other world. This one is a world of hard surfaces and sharp corners and sudden aches that fill my chest and reduce me to a howling, sobbing wreck. It’s a world where I cannot contain the pain inside. It’s the world where I said goodbye, and now there’s a space my beautiful Girl once occupied. That space is cold and empty. It has no air, creates no shadow. It’s space unfilled.

This weird double existence seems to have developed since the funeral. I went through the entire service, making arrangements, having the casket sent to her program for her friends to decorate under the guidance of her beloved art teacher. All the while I was busy organizing flowers, selecting music. I knew two of the songs that would speak volumes about the incredible person my Girl was, and the amazing relationship we had. I could not find the third. It had to be big. It had to be touching. It had to be right.

Time went, and I began to panic. My Girl had a personality ten times her physical size, so I knew it had to fill the room. I wanted something that spoke about the suffering she had left behind, about the journey she was always going to make. I spent months—eighteen months, to be exact—searching for the perfect song. The day before the service, I was at my wit’s-end. I had already decided on something only halfway good enough, when I found myself on the phone on hold, waiting to cancel my welfare payment, when the opening bars to New Zealand singer Hollie Smith’s “Bathe in the River” rang down the line. It was perfect!

It was music that would take her from us for the last time, music I would remember her by. It was music that spoke of a dignified and peaceful passing.

We gathered at my home to  drink and eat and talk about a wonderful young woman we’d been so privileged to know. I thought it gave me closure. I thought it brought me peace.

My darling friend Rachel stayed that first night. We sat up talking, laughing, and remembering.

But somewhere in the back of my mind, I was worried. Where was this great sorrow I was supposed to be experiencing? Was there something wrong with me? Had I suddenly become heartless? Or was it that I’d been grieving for so long, I was moving through the process more smoothly than I’d anticipated?

I felt robbed.

Until the next day.

That’s when World Number Two made its presence felt.

After a leisurely breakfast and a promise of many phone calls, Rachel packed up her things and deposited them at the door while we said our goodbyes. I meant to say goodbye. I really did. But the instant she lifted her bags, all the air in the house seemed to be sucked out of that open door. I couldn’t breathe. My Girl’s absence filled the house with a feeling of despair and absolute loss. An implosion in my chest folded me in two, wailing like something deeply wounded. I begged Rachel not to go.

She grabbed me, hugged me tight, then immediately unpacked. After another night of talking and remembering, we once again said our goodbyes. This time, she had to go. This time I let her.

So this is my world now. The house is quiet, my days stretch out empty in front of me. I still get up at 5 a.m. Maybe one day I’ll sleep until 6 a.m.

I have no idea what the future holds. It’s as though my purpose in life has been stolen away from me. But when I look back from this point in time, my Girl had been slipping from my grasp so slowly and for so long, I had barely noticed. What I had left was her body, racked with pain, only containing a tiny flickering light.

Gone was her amazing strength of spirit. Gone were the laughter and the twinkle in her eye. Illness had crept in while I wasn’t looking and stolen away her vitality, her essence, her radiance. Our beautiful life together was just a memory. I’d left it further back on the road without noticing. I’d been so busy keeping her alive, keeping her comfortable, I forgot to be happy. And no matter how hard I worked, how many drugs I administered, how hard I prayed, I knew she would one day leave. I never let that knowledge stand in my way.

Looking back, there were times when I prayed it would all end. There were moments when I looked to the day when we were no longer on this rollercoaster ride—not because I wanted her gone—oh, dear God, nothing could be further from the truth. I wanted to keep her with all my heart. But in reality, all I had left was a shell with that faint spark still sputtering on. It was no life for her. It was no life for me. I wanted the pain, the suffering, the hopelessness to be over. That came at a price. My Girl and her suffering went hand in hand. If I lost one, I lost the other. It was the worst no-win situation.

Perhaps one day the two halves of my world will merge. Perhaps I’ll inhabit a world where my Girl may be gone, but she’ll always be with me. It’ll be a time and place where I can see the little everyday things that were once a part of our everyday lives and I won’t fall apart. I’ll be able to hear her songs, and not feel the ache; I’ll touch her clothes and not feel that desperate yearning to roll back time and find her again.

I know the pain will be with me forever. I’ll learn to place it into a box. Every now and then, I’ll lift the lid and take out that pain. My heart will ache every bit as much as the day I lost her. But then I’ll place all that pain, all those memories back in the box, and my other world will take me onwards.

I know I’ll never be alone. I know that wherever I go, she’ll be with me, and that one day, we will meet again.

I’ve learned so much on this journey. I’ve learned to love, to laugh, to fight when I need to. I’ve learned that I can make my voice heard and that I can move mountains. I learned this when she was alive. I’ll keep it with me always.

Who could ever ask for more?



Filed under Uncategorized

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