Happiness is that last perfect day with my daughter, Scarlett.

I had flown back to Australia for my second daughter Kristin’s wedding, and I had already spent a special day alone together with Scarlett’s sisters Farrah and Magdalen. Her dad said, “Scarlett should get to have a special day with her mum, too,” and I couldn’t have agreed more, so it was arranged, even though I had been terribly sick with the cough that probably killed my child, in the end.

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So, when Scarlett was wheeled up the path to my mother’s door that last morning, I was so full of resentment and grief. I kept apologizing to her throughout the morning saying, “Oh, Scarlett! I’m so sorry! With everything you must put up with, I have no reason to complain about my life!” but I was churning inside. Yet, I wanted the time to be special. It was our day.

So, I showed her many of the videos from when she was little, then I wheeled her heavy chair down the steep hill to the local strip mall in the beautiful sunshine. As soon as we got into the bustling shopping center with all its bright colors and vivacity, her face lit with joy. I wheeled her around the supermarket so she could see everything, and we called in to the florist to order a magnificent red waratah to contribute to a good friend’s wedding bouquet. The florist asked about Scarlett and showered her with attention in the fresh, fragrant store.

Then I wheeled her into an opulent gift shop, wall to wall with pretty baubles and lavish jewellery. I stopped to purchase a wedding card for my friend, and the store attendant exclaimed at Scarlett’s beauty and asked how old she was. “Sweet sixteen,” I answered proudly. Scarlett was having a wonderful time. Then we headed for home, with me huffing and puffing and wrestling with the heavy wheelchair, and stopping to sit in the shade and the cool, gentle, breeze, while the little insects hummed busily in the air around us.

My mum had brought us some lunch, which Scarlett loved, and then we sat in the garden out in the courtyard under the rich, blue sky, drinking tea and chatting as women have always done. Scarlett was so happy to be included. Even though she could not talk, she smiled and laughed, and enjoyed the relaxing ambience of the moment.

One of the last things I ever told her was to hold on—that science was so close to a cure, if only she could stay healthy and strong and tenaciously cling to that hope. I have since fretted about whether she felt guilty for letting go of that last whisper of life because I made that request of her.

As the shadows grew longer, and the air started to chill, I wheeled her inside the house, and played her Elvis, whom she always loved. No matter how much pain she was in, or how much she was crying, she would always stop when she heard the first few rich notes of Presley’s voice, deep and mellow, like golden treacle sliding off a spoon. I laid her on the sofa with pillows and comforters, and gently squeezed her hand as we gazed into each other’s eyes until her father came to collect her. Three days later she was dead.

She had a way of smiling at me like I was the most important and wonderful person on earth. She always smiled with her eyes, and you could see deep into her soul. I have relived that day, that moment, a thousand times. It will always be my happy place. Sometimes happiness pierces your heart.

That last day, I was wearing the Winnie the Pooh shirt that Farrah had given me. I still can’t wear it without a pang, like a knife in my chest. I also wore it the day I said goodbye to her, weeks later in the funeral home, covering her face with my tears in that silent, ethereal space, with the light filtering through the windows. It was like she was still there, somehow, waiting for me.

Scarlett’s disability has taught me that happiness can be found even in the most difficult circumstances. She taught me that the simple pleasures of life can be enjoyed by almost anyone. She was the bravest person I know, and despite the deprivation and pain she endured, she was also the happiest. I was her mother, but she was my teacher.

Estelle Baines

Scarlett was a real treat. Despite the disability, she was such a delight to be with. There are chores associated with a disabled kid, but they don't seem like chores. It was always a delight to go in in the morning, and she wouldn't be awake, she'd be asleep, and sleeping beautifully, looking lovely, you know (the general banter was "Hey, Scarlett, sorry it's a school day and you need to get up...") and just getting her dressed, and lifting her out of bed, and getting her changed...the conversation. She was always smiling--well, often not always. Most of the time she was smiling, she was happy, she was laughing, she was joyful. She brought so much joy--to Estelle's life, and to my life, and pretty much to everyone who knew her.

You know, we had a conversation earlier this year with the NDIS people, which called up and came out, about Scarlett's age this year. So we had a conversation, and they said things about goals and what we wanted to achieve, and stuff like that--which is a very business-focused sort of thing--but it's intended for all the right reasons, for the child. And I said at the time, we actually have a number of goals in our family--and I can't remember them all--but it basically came down to: healthy, happy and productive.

And with Scarlett, she seemed very healthy, despite the condition. She was certainly happy, with the joy she found in meeting people: and talking to people, and being with people, she just loved. And the productive thing--I said at the time, "You know this is going to seem strange--from a disabled kid who is right up there on the scale of disability, not able to do pretty much anything--but she is actually a productive, contributing member of society just in being there. And I said at the time, she really is an inspiration to me, just in what she goes through and the fact that she's always smiled. She never really complained about her condition. She never really complained about her life. She just took it as this is the condition she was in, and she went forward from there. And I just admired her so much. And as an inspiration to others she was just great. I mean, look at you all here. Clearly she touched people she met.

Greg Sydney-Smith