The following photos are of messages written by Kessia on 27 and 28 October 2002, in the days leading up to our Gold Coast trip. It was the first time Kessia talked about her feelings of frustration, and about her tumour.
By this stage, Kessia was extremely weak. She had lost the use of most of her body and was unable to speak, walk, sit up or generally do anything. I was dreading the day where she would lose control of her right hand and arm, as they were her life-line; her only means of communication. This was to happen on 30 October.
Kessia was a real perfectionist and it caused her an enormously huge degree of frustration when she could no longer control her handwriting. She would continue to persevere, erasing each letter or word repeatedly until she was happy with it. I finally convinced her that I knew how excellent her handwriting was, and that while she was sick, it didn't matter if it was a bit messy. I also convinced her to not bother about spelling, and just to write words that she didn't know by sounding them out. Once I guessed what the word was, I told her to go on to the next word. That is why you will see several unfinished words in her messages below.
Kessia's writen messages are recorded
under each photo, while general comments I recall making and background/context
details are to the right. |
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After days and days of not being able to understand Kessia's speech and needs, on 26 October Kessia wrote of her frustrations for the first time: "Mum and dad are stupid, stupid, stupid and dumb, dumb, dumb." This opened up a whole new level of conversation for us, a very welcome and important oppurtunity to say, "Yes, darling, you are so right. Mum and dad are very, very dumb and stupid, and we are so, so sorry that we don't understand you. We don't know how hard it must be for you, and how frustrating it must be, but we are so impressed with you. You are doing so well, more than what we could ask for." The following day, Kessia wrote the message on the left. All I could say after each sentence she wrote were things like "I'm so sorry, darling"; "Yes, I am very stupid for not understanding you, please forgive me" (which she did); and general comments about how hard it must be for her and how I hate her tumour and what it's doing to her body. We had been planning on going out for brunch all morning with Michael, and Kessia was getting tired of waiting for us to get ready, hence her cafe comment. Plus, she put in a cheeky comment about wanting KFC for lunch (which she wasn't allowed :-)).
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The remaining messages here and below were written by Kessia on 28 October. Kessia's message about "waking up her teeth" was her highly imaginative way of telling me why she couldn't chew or swallow properly. Her "something soft and light" was chocolate yogo. Kessia practically lived on it for weeks. It was what she needed to wake up her teeth in the morning and how we gave her her powdered medications three times a day. I've been sorely tempted to write to the makers of chocolate yogo and thank them!
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There were many other messages we didn't have time to photograph because Kessia was wanting to write so quickly and wouldn't let go of her etcher sketcher. Her message before this read "Touma norty" which took me a while to realise she was saying "Tumour naughty". It was the first time she had referred to her tumour. After that initial comment from Kessia, I told her how much I wanted that tumour to go away, and how I hated that tumour for what it was doing to my precious girl. I addressed her tumour at the back of her head and said "This is Kessia's mum talking. We don't like you Tumour, and we want you to go away!" Then Kessia produced the message on the left. And what can you say to your beloved child after such words? After you realise that they recognise the huge battle they are up against, and you know that tumour is going to kill your most precious girl? I think I said, "Darling, you are so right. That
tumour is bad and terrible and horrible. It's dumb and stupid. AND I
HATE THAT TUMOUR!" |
Go away dumb and stupid tumour |
There is no story behind this next message from Kessia. Just the obvious. |
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Me too little |
This message is heartbreaking. Even more so than Kessia's previous ones. I'd like to explain the use of Kessia's "me" in this sentence. It's not poor grammar, rather a left over from our days in Port Vila. Kessia learnt to speak quite a bit of Bislama, the local language and a pigeon form of English. In fact, she was rather good at it and talked to our housegirls and gardener in her own mix of Bislama and English. There is no word for "I" in Bislama, it's all "mi" (me). "Bae mi go now", or "mi laekem you" (I'll go now; I like you). Kessia used to always use the Bislama "mi" instead of "I" and I used to worry that when we returned to Australia, everyone would think she had poor grammar. In fact, Kessia had an eruditeness beyond her years. From the moment she could speak, people were constantly amazed at how well she could talk, and hold her own in conversations. But back to her message: Kessia was too little. It wasn't fair. It was too hard for her. She fought and fought and fought. She was determined and stubborn. She continually impressed visiting nurses and doctors. But in the end, she was just too little and the tumour far too naughty. |
| Updated 13 November 2002 | Site hosted at immir.com. |
