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I just want to be…

“I just want to be a normal kid,” she said after she had pulled her naso-gastric tube out in a sad moment on Sunday,

amongst the teenagers who were sleeping over for Lily’s 16th birthday.

“I want to be like everyone else”.

“but what does that mean to you, exactly Ives? What do you think is normal?”

“You know, not having to go to hospital and stuff,” she said as she curled into my lap,

“not having to take medicine all the time or have things that tell everyone that I’m sick.”

and

“I just want to go to school and go back to dancing and not have to worry about when I will have to go to hospital again”.

“I want to play with my friends because what if one day they don’t want to wait around any more and I don’t have any left.”

“I want to be tall.

Like Sophie.

Like Lara.”

“You know – normal”.

We left the naso gastric tube out.

It was the best I could do for her right then and there – offer her that little piece of similarity, that freedom

because I can’t give her what she really wants.

Not yet, anyway.

On Thursday we are going down to Westmead Children’s Hospital

to attempt to convince more doctors that they should listen to our ideas on creating some normality for our girl.

A long term line,

a long course of IV antibiotics,

a chance to stay out of the hospital,

a chance for all of us to live.

What are our chances, I wonder.

We’ve been asking for change now steadily for over six months, probably more like a year.

June 2012 was Ivy’s first urinary tract infection, consequently the last time we went to Westmead as well.

Since then we have had several bouts of pyelonephritis and two cases of renal failure along with constant infection.

Her school year consists of three full days and a dozen half days to date.

She can’t keep up and will need to repeat because of it.

Peripheral access is so poor that every time she has an admission the doctors all draw straws when it comes to cannulation

and she is needing a surgical procedure to place a temporary line -

it’s all so traumatic.

For Ivy

but for our family too.

The medical team want us to work on long term goals for the chronicity of her disease

but how can we do that when we are always consumed by the acute infections.

How can we help her to reduce medications and work on voiding dysfunction and improve her rapidly decreasing iron and vitamin b12

if there is never a period of wellness.

At what point do you say that the benefits of our proposal outweigh the risks of Ivy’s current situation?

I know, I know – I’ve said it all before but

I’d love to be able to come back from our appointments and say,

“okay Ivy. Okay, baby-girl.

Today I can give you your ┬ánormal”.

 

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19 Responses to “I just want to be…”

  • dianne nunn:

    so sad for all of you
    hugs

  • Glowless (53 comments.):

    Oh Tiff, I can’t imagine how hard it is for Ivy and for the family. Normal would be fabulous. Average is fantastic. All my love xxx

  • Heidi:

    It must be so very difficult not to be able to just fix things for your little girl, I can’t even begin to imagine how frustrating & painful it must be for you all. I have a serious congenital health problem so my life has never been “normal”. As an adult I can appreciate how well things have gone for me medically considering the severity of the condition but I still have to admit to having the occasional time when I think “why couldn’t my life just be normal?”. As a child I tried to stay positive, but those “it’s not fair” moments happened. My prayers will be with Ivy for strength to cope with this unbelievably unfair situation she is stuck in, also for your family as you have to watch her going through it all. I hope some sort of plan can be sorted out to help make things more manageable for Ivy

  • Mary:

    Sending love. I hope you get what you want and need for Ivy, to give her the ‘normal’ she deserves. xxxx

  • Angela:

    Hi Tiff, I have been reading your blog for a while now. All I can say is how much I admire the courage of Ivey, you and all of your family. Every day you have to balance ‘normal’. Ivey’s normal as well as everyone else’s normal. Be proud of what you do, and I hope and pray that the appointment at Westmead gives you ALL some plans and positives for your futures. Take Care, Angela, Queensland.

  • Sue:

    There are those who wish to win multi millions of dollars in lotto and other material things. My wish is for a miracle cure or at the very least a touch of normality for Ivy, for you & Dave, for the entire family. I wish, I wish, I wish!!!

  • Kirsty @ My Home Truths (1 comments.):

    I hope they listen to you soon – the emotional need for wellness and for family stability must in part counter any concerns the doctors may have in trying something new. Hoping you get some progress in Sydney x

  • Anne:

    It doesn’t sound like much to ask for does it :( . Wishing you an extraordinary amount of normal Miss Ivy. I think you are a wonderful young lady. I also think you rock. Xx

  • Karan:

    (Exhaling in understanding) I want that so much for us all. Xo

  • Mum:

    I hope the doctor Ivy will see at Westmead has both empathy and sympathy when he reviews her history and listens to Ivy’s wish to help her have as normal a life as possible.

    It is perfectly reasonable as she grows older to appreciate what a normal life involves and the difference in her current way of life. it is so impossibly hard to have the inability to help her have as near as possible a normal life without a doctors’ approval.

    Here’s hoping this time for the most positive result possible. Good luck! <3. xoxo

  • Alison:

    So despite the woeful start, how did Westmead go?

  • Amandarose:

    Good luck with the hospital- I hope they get to the bottom of the kidney infections and can help you attain some improved quality of life for Ivy. It feel like something has been missed for her to get so many kidney infections and renal failure this last 12 months. Good luck or short term answers and long term too!

  • jeanie (224 comments.):

    Oh Tiff!! So what are their reasons for not doing what you want to do? I can see no other reason except for Ivy and your family’s normal to be less stressful, so am putting all of my prayer energy into the outcome being a new Ivy normal.

  • Tiff (118 comments.):

    Jeanie, it has to do with infection because of the neutrophil and innate system dysfunction. At this stage though, I think the benefits outweigh the risks, which is our argument.

  • BW aka Barbara from Boston:

    Oh Tiff, I hope they really HEAR you and ivy in Sydney. Could you have Ivy tape what she said to you so the doctors can hear it5 from her if she is too despondent and afraid at the appointment. Why can’t they listen to the 2 of you. I will be praying tomorrow (Thursday in Australia) for a productive meeting. At some point they have to put quality over quantity if need be. Praying and wishing for the whole family to get the decision needed. lots of love and strength! Will be waiting for the results

  • Kelley (274 comments.):

    My heart breaks for Ivy. And for you.

    And, selfishly, it makes me more thankful that Boo has no idea that he is different. That he is not ‘normal’ cause I think that is the hardest thing to deal with.

  • Kayla:

    Ivy – it is hard to be “normal” when you are extraordinary!

  • Renae craft:

    Sophie said she will never forget Ivy, she will always be waiting for her

  • Jennette:

    Of course she does, poor sweetheart.

    My heart goes out to you.

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