Hope and Failure

For some while now, The Girl has been in decline. She’s become more fragile. She walks with a tottering gait, she’s slow to respond, and her appetite has decreased. Thursday night, she didn’t want her dinner. She was doubled over, face practically in her plate, so I fed her. Then I put her to bed. She staggered out at nine thirty, bouncing off the walls, saying she had a sore tummy. I put her back to bed. I worried. She threw up and looked terrible, so I called an ambulance.

Going into Accident and Emergency is a last resort. It’s the decision I take when I’ve exhausted all the other options, when I think there’s nothing else I can do. We arrived at ten thirty. We waited. We saw nurses, waited; saw doctors, waited some more. Finally,  at four thirty the following morning they took her to the assessment ward, and I went home.

Friday morning the specialists arrived. Doctors, nurses, consultants. They questioned, examined her, studied her notes. Just after lunch, they gathered and quietly drew me aside. I stood surrounded by a semi-circle of doctors, junior doctors, diabetes specialists, and they told me The Girl was in the final stages of liver failure. The hospital social worker would be called; the palliative team would be called. I’d have support, I’d have help – whatever I needed.

I burst into tears.

I called my sister, Chookie-Lou. She burst into tears. I called the Chukker-boy. I told him The Girl was in “the final stages of liver failure….” which was then followed by a series of muffled squeaks because I dissolved into a flood of tears. He said he was leaving right now. I hit redial and called him back and told him we weren’t talking last rites here, that she wasn’t passing over right this minute. He said he’d come anyway.

We sat by her bed. We met with the social worker. I told her I wanted The Girl to come home. The Girl would not want to spend her last days in a hospital. The Chukker-boy told us The Girl would probably bounce back. We gave him grim smiles and nodded like we understood he was trying to see the bright side. Like he was deluded but we’d humor him. The social worker told me I’d have support, I’d have equipment; everything I needed was at my disposal. So I went home.

I called The Girl’s art teacher/respite carer, told her the news. She burst into tears. I called her program manager, told her. A succession of calls went out causing a wave of people all over the North Shore to burst into tears.

I returned Saturday morning. The Girl was sitting up in bed. I helped shower and dress her. She wished the nurse Merry Christmas. I told her Christmas was over. She remained hopeful.

She requested her Playstation. She requested a movie and a haircut, then polished off an enormous meal. She watched The Smurfs and nodded off for twenty minutes. Frankly, she was looking pretty chirpy for someone at Death’s door.

She ate her afternoon tea, colored in three coloring books, and demanded Pokemon. At four o’clock, I kissed her goodbye, told her I missed her. She gave me a cursory wave and carried on coloring.

By the time I got there on Sunday morning, she’d eaten breakfast and had morning tea, gulped back a cup of tea and wished the entire ward staff Merry Christmas. I told her it still wasn’t Christmas. She still remained hopeful and ate lasagne for lunch. I asked her what she wanted – what she needed. She said, “More lasagne.” I told her there wasn’t any more. A nurse came and took blood. The Girl wished her Merry Christmas. I reiterated to her that Christmas was done and over, that her birthday was next in line. I told her visitors would come today. She queried the present situation. I told her not to get her hopes up.

When I left tonight, she was sitting up coloring her Dora the Explorer book and looking slightly miffed because the expected presents never materialized and I had confiscated the computer which, by rights, should be hers to watch a Smurf DVD on. Boredom is threatening. Hospital life is suddenly not looking quite so terrific. She wants her Playstation. She wants that haircut and to go to the video store.

Tomorrow will be interesting. The palliative team, the diabetes team, the ward staff and doctors will converge to plan the way forward. The Girl will probably wish them Merry Christmas and shock the hell out of them. She looks better than I do. I’ll tell them not to be too surprised, that The Girl has had more lives than a bagful of bloody cats. Then I’ll take her home.

I know this won’t last forever. I know that one day, probably in the not-too-distant future, we will need the palliative team and the social worker and all that support so I can keep her at home. We’ll be calling people in succession and causing them to burst into tears. I’ll be preparing myself for the worst, for when The Girl is slipping away from us. I don’t think today is that day. I think this has been a dry run. But it’s made me realize some things:

  • It’s made me realize just how much I’ll miss her
  • It’s made me see how much my life will change
  • It’s given me a glimpse of how much she brings to my life and those around her
  • It’s brought me to appreciate the time I have left with her
  • It’s reinforced for me what a wonderful, special and amazing little person she is
  • It’s made me realize that the time I’ve spent with her has been worth every minute; that my life has been enriched by her; that, given the choice, I wouldn’t have done things differently
  • It’s made me see once again just how much I love her

And who could want more?

 

 

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18 Comments

Filed under Parentlng alone, Uncategorized

18 responses to “Hope and Failure

  1. Chukka

    It simply broke my heart today seeing her in the hospital bed.. watching pokemon, colouring in her books, shouting YOWEEEEE and reminding us Bono is a very naughty doggie, being waited on, laughing at the mention of people falling over.. no, wait.. she’s having the time of her life haha!!

    But yes.. it was somewhat of a drill exercise..

    • It’s going to be interesting to see what the docs say this morning. I just hope this is a long term reprieve.

    • Kate

      All I can say is love your way…. And the more I read these posts the more I realise what an amazing person you are…… your strength and your courage you are truly inspiring for everyone who reads these… that you share with such grace your true feelings never change this…… It makes me realise the stuff I worry about is so trival and that life is so so precious and that motherhood is the most amazing gift ever given and being a true mum is a skill beyond any qualification, always know in your heart you know what is right for her…..your incredibly amazing person darling….. truly…. Luv Kate

  2. That’s a heart warming post – thank you for sharing it with us.
    Kia kaha.

  3. Nicole Hayes

    I can’t begin to understand what it’s like to live with the belief that you’ll most likely outlive your child. All I can say is that I’d hope I was capable of even half the grace and humour you consistently show. Even a quarter. And to your amazingly spirited, inconquerable girl – rock on, sister. 🙂

  4. Margaret

    I am sure that I am not alone in not knowing what to say but feeling that I can’t let this go by without saying something. Thank you for sharing – I am humbled by what you have been going through on a daily basis. Your strength amazes me. Hang in there.

  5. Marg

    She is such a character!!! Very hard to believe!!! Vick dosent look very sick sitting up in bed having a great time. So Sad and funny at the same time.
    Very well written Cath.

  6. DM

    Happy New Year Cathy,
    Margaret has said what I would like to say. Look forward to her coming back
    Hope you are ok.

  7. Anna

    Hi Cathy
    I was surprised to see Vicky didn’t have her dental operation when I returned to work this week but now I see why. Best wishes to you both; stay in touch if we can help you in any way.
    Anna

  8. eporter70

    New to your blog after reading a comment you left at Write it Sideways.

    Add a North American to those who’ve shed tears, though your descriptions made me laugh so thank you for that too. I’m glad you have a good group of folks who’ve been there along your journey. Thanks for sharing a part of it.

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