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When a blog is boring.

We’ve been in the hospital.

Day 13 today.

I won’t go into all of the nitty gritty but it involved a reluctant temporary line, an arrogant anaesthetist and several changes in antibiotic.

Also –  dysfunctional  imune and renal systems.

Home tomorrow to wait for a week before we are sent to the Children’s Hospital because nobody knows what to do any more.

Better yet, is that the two primary players in Ivy’s team are  now away

and nobody knows what is happening – they all just keep asking me

and I’ve run out of crazy pills.

It’s deja vu in every sense of the word.

It feels like a strange kind of abandonment.

Again.

I don’t expect anyone to understand that feeling exactly but gee, it would be nice if somebody did.

Someone referred to all of this business as being  some kind of groundhog day

and that it’s tiresome (to live it  or to read it, I’m not really sure. Maybe both.)

It’s true, of course.

It is tiresome.

It does get boring.

Unfortunately, it’s life for us.

That’s not to say that there hasn’t been plenty of happy – there has,

it’s just  hard to take the little bits of good and spin them into a post

and really, aside from medically based stuff, I’m not that opinionated.

I said that when my big girls turned 18 that I would stop blogging but here I am a week later, typing away.

I am my own worst enemy.

I think I’m done and then I remember something I want to write about or photos I want to share.

Which reminds me, I should write about their becoming adults and the almost unfathomable knowledge that Lily will be sixteen on Thursday.

When I started to blog they were eleven and nine.

Another friend said that I should make the blog private  or switch off comments – until I have something better to offer the internet than just this.

It’s tempting.

It’s tempting, just so I don’t have to listen to everyone tell me that my blog is the same stuff just a different day.

It’s hard to come up with good writing material when all you do is sit in a hospital room.

I could regale you all with tales of the hospital food, I guess

or how single cut hospital sheets don’t fit well on a double bed and that even if you use two they still ride up

and how after a few days you can’t feel your back and hips anymore, so it really doesn’t matter

or how the horrible anaesthetist denied Ivy pain relief

and how I honestly thought I would hunt him down, bore a long central venous line into his body

and tell him it was a “nothing procedure” and insist that Panadol would be enough for him.

I could tell you the simple joys of having Noah for a sleep over and how the pair slept in each others arms

or how they sat for hours yesterday morning playing with $2.50 puppets from K-Mart while nurses and cleaners moved in and out of the room intermittently

and they were so focused on each other they barely noticed.

Or perhaps I could whine about lack of continuity of care and how that affects all of us

but in the end, it’s all hospital fodder – just written from a different perspective each time

and apparently that’s boring.

Don’t worry, it bores me too – I bore myself.

What I will say is this: on Tuesday we’re going home and I am going to relish every minute of it

and try not to think too much about anything at all.

 

 

 

 

 

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29 Responses to “When a blog is boring.”

  • dianne nunn:

    Tiff, you don’t need to apologise for the things you write. If others are bored then they needn’t bother reading your blog. Some of us care deeply about you and your family (if from a distance) and accept that some posts are more uplifting than others. That is life – it is your life and you owe nothing to your readers. I wish you and Ivy and your family strength and serenity. xxx

  • claireyhewitt01 (1 comments.):

    I don’t know who tells you this stuff.

    I can only hope you roll their comments into a ball in your head and blow them away with the wind.

    I have never found your blog boring. To me it is the window into the world of a family living with a chronically ill child.
    Of course I don’t ‘like’ hearing of Ivy being in pain and suffering, but I don’t find it dull or monotonous either. I cheer for her on the good days and hold her in my thoughts on the bad. I love seeing images of your big kids and all that they do and seeing the bond of Noah and Ivy is lovely too.

    Your blog is full of stories of Ivy living her childhood in a different way, it is also funny, entertaining at times, displays your photography and shines a light on some of the issues relating to continuity of care in our hospitals.

    I hope you keep going.

  • Leah (1 comments.):

    Right for you rather than for what you think others want to read. Make it authentic and at the very least you can document your journey, your feelings, your experiences in their raw, unedited entirety. That makes you real and why I like your blog. Some days are the same and that’s okay!

  • Siobhan:

    I don’t comment often. But I do read always. Always hoping for good news for Ivy. One day, there will be. You’re not boring. Coming from a mother of a son, with a 5 years undiagnosed illness, I never find you boring. Relatable though. Keep blogging, I would miss your lovely writing. Even when it is not always sunshine and giggles. And I love your instagram too! (siobhanelizabeth)

  • Sarah:

    I never, ever find you, your blog, your writing boring, Tiff. Do what makes you content. God knows you’ve got enough to deal with, just do what makes you happy/gives you the least grief xo

  • Lesley:

    Never, ever boring Tiff!!!! I look forward to reading your blogs. You write from the heart. If we can help your situation just by giving you a place to let out your pain and to celebrate your wins, then we are all here for you to do that. Don’t let other people dictate what you should or shouldn’t do xx

  • SassyCupcakes:

    Seriously, this your blog. You could post nothing but pieces of toast and you would still be entitled to post as often as you wish – even 10 time a day – because your blog is about you and whatever you choose to share. You owe no one who reads this blog anything. This is your place to share what you need to, and keep private what you want. Your readers don’t have the right to expect to be entertained, or get all the gossip, or have you stand on one foot and shake your leg. If you need to stop blogging for you, then do that. If you enjoy posting and sharing things, keep going. Whatever you do, anyone telling you your “blog is the same stuff just a different day” can fuck off.

  • Theresa:

    Yep Bizarre they tell you thisX
    It’s not Boring; it’s life.
    They need to go get a life.
    Xxoo keep going.

  • Watershedd (58 comments.):

    What the BS? Seriously, Tiff, write for YOU, not anyone else. No-one has to read your posts. Just like they can choose another TV channel or a different book, so can they choose not to read your blog. This is your place of expression, of release. You have only ever sounded frustrated to me about fighting to ensure that Ivy’s care is what she needs not only physically, by emotionally and spiritually. Sometimes emotional is more important than anything else. Big hugs to you and yours. X

  • Jackie:

    I love your blog even when you think it’s boring. the positives I have taken from this one is that your beautiful children still have the ability to be kids in the middle of the madness. That they can just enjoy each other’s company and not need the electronic or monetary worlds help. If the outside world doesn’t want to read what has been deemed boring that’s their choice and should make it quietly. But your take on the world is far from boring its brave, humorous and honest. Something very rare in our world today.

  • Dianne (35 comments.):

    If they don’t like your blog why read it? Bizarre. I don’t think your blog is at all boring. I would describe it as touching, warm, authentic, down to earth, full of love for your family, fantastic photos. I love it. If your blog helps you keep doing it. Bored readers should just go elsewhere.

  • Jennette:

    Tiff don’t apologise. It’s your blog to do with as you please.

    BUT it pleases me to read or see anything you fancy blogging. I check in daily hoping to hear something, or even just see one of your beautiful photos. Whatever you feel like sharing DO! And don’t turn off the comments, how can I let you know you, Ivy and all the family are in my thoughts if I can’t post a comment?

    I feel for you all so very much. Glad that you are seizing any happy moments, but so sorry you are let down far too often.

    Sending you bloggy hugs from down South.

  • Heidi:

    I don’t often comment but read all your posts. If someone finds your blog boring then they can just not read it. This is your life & unfortunately it consists of more medical stuff than any little girl should have to go through. Keep blogging & getting your feelings out on here. I am amazed at your strength in coping with everything that goes on & particularly in how your gorgeous girl manages to still find a smile with all she deals with.

  • Amandarose:

    You blog has never been boring- I am glad you keep blogging even if it is the same- I don’t even know you in real life but I find myself throughout the day wondering if your ok, if things are getting better or worse, That it is not fair for a child and a family to have to deal with this stuff day in and out. It is your story, it is honest and interesting and it helps. It helps health professionals like me see the other side. It helps people with sick kids feel someone else understands. It helps your vent all your frustrations.
    I bets most people are just hoping thinks improve for you all. Good luck next week in Sydney. I hope someone finds some answers. I know I spend time thinking about things and wondering what would help- maybe you r blog gets greater minds then mine thinking too.

  • jeanie (226 comments.):

    Tiff

    Perhaps what you need to do is have the comments moderated and someone else can prune out the weeds for you?

    Not boring – people who aren’t reading this to support you and your family just don’t get a vote.

    Okay?

    Hugs to all of you – still hoping for miracles to come through.

  • Emma Fahy Davis (9 comments.):

    Enjoy being home, blissful home. And write because you want to, because you NEED too. Don’t mind the nay-sayers. If they don’t like it, they know where the little red ‘x’ is. I relate to your writing on so many levels, and Sades is excited about meeting Ivy, I reckon they’ll probably find they have a lot in common too – and I don’t just mean dodgy immune systems…

  • Mary:

    I NEVER find you boring. Write for yourself anyway–because I know whenever you try to change that, it doesn’t work. Nuff said.

  • Ramona S.:

    Ignore them! Your blog is honest, raw, and an outlet for your worries, grief, and pain. I’m rooting for Ivy, you, and your whole family from the other side of the world. Don’t you stop! Oh, and before I forget… Here is a (hug).

  • anne carlo:

    hi. so no you are never ever boring. i look for your posts and think of you and your beautiful daughter and wonder if she’s better… i have cried at many of your posts as they hit such a strong chord in me… i have 4 children with varying degrees of disability. i get what its like to live with a terrifying chronic illness in one of your children. my sweet son anthony passed away 6 years ago (much different circumstance – he was a severly shaken baby that was left completely disabled with a god awful seizure disorder that basically no one could figure out how to control) . he was 6 years old when he died. those years that he was alive were filled with many joys and tremendous sorrows. our whole family life was very much like your life sounds now… in and out of the hospital, the horrors of uncontrolled illness, he was on and off a vent multiple times oy, i could go on and on… i wish i had blogged about things at the time but i just didnt. your blog is gorgeous – all of it. please keep writing and know you and your family are in my prayers ! anne in ny

  • Ruby McGill:

    I cannot understand how people can leave negative comments – do they have so little joy in their own lives that they have to inflict their negativity on others? There is an easy way out – they can choose NOT to read.
    For myself, I am always happy to hear from you, whatever the reason you have chosen to write that day. Just to know that, although the circumstances often STINK, that your family continues to stick together, to support each other, and that you write the way it is…. often frustrating…. but saying it the way it is. I’m glad that you’re on the way home; hospital stays are always difficult, and feeling that you have no support from the very people who should be supporting you is difficult. And even though sometimes you feel as if you are the only one fighting on Ivy’s behalf, I continue to pray that someone, somewhere, will be able to come up with something that will help with Ivy’s quality of life.
    I am left with a lovely mental picture of Ivy and Noah, curled around each other, sharing their love in their own special way. Thank you.

  • Elaine:

    It is NOT boring! Love reading and cheering you on. Among other things I’ve really enjoyed just hearing about life in Australia when things have gone well and you’re out of the hospital. I care about your whole family and what happens to them. Do as you wish, not as those “friends” say.

  • Mandi:

    Seriously- WHO ARE THESE PEOPLE!? I am always shocked and appalled to hear of the way people speak to you, treat you, act towards you, etc. I can’t fathom ever treating someone or speaking to someone the way people have done you. It makes me angry and sad for you all.

    I also don’t understand the medical community you deal with. Maybe it’s a cultural thing (I’m in the US) or just the particular hospital you have to deal with but I can’t understand why the doctors are so callous and cold and treat you guys so badly. While I’ve not had to deal with pediatric hospitalizations, my husband was hospitalized for 8 weeks a couple of years ago and has been in and out several times since then and we’ve been dealing with ongoing health issues and we’ve never been treated the way you all have. I can’t understand it. It makes me so angry for you and I wish I could come and advocate for you guys to help take some pressure off of you.

    Please don’t go private and please do continue to update us on things, regardless of how repetitive and ‘boring’ some may say it is. So many people are emotionally invested in your family and in Ivy’s well-being. We want to hear how she is, what you’re all going through, no matter if it’s good news or bad news or more of the same same same. I personally come here hoping for updates and stories- even if it’s not good news, it’s your story and you should never be shamed or badgered into hiding, changing, or doing anything differently.

    I’m always cheering you all on from what feels like a million miles away. :)

  • Leigh (1 comments.):

    Belatedly, I read this and thought of you.

    http://www.kevinmd.com/blog/2014/05/remember-mothers-sick-children.html

    I never find your posts boring Tiff, rather, I am so sorry that this is what your life looks like at the moment. As long as you get any comfort from sharing your story, and the life of your incredibly brave girl, please keep posting.

  • Amandarose:

    I am not sure if it was my comment that upset you. I just wanted to clarify- I did say on facebook you deserve better then this ground hog day- not because you or your life are boring but as words of sympathy, that we hurt for you that you and your girl have to keep going through this without answers in sight. It was meant as sympathy. You do deserve more and I do hope you find answers. I am so sorry this was interpreted as calling your blog boring. Blog is NOT boring but I do hope things improve for you. Either way we all care and want to know how your going.

  • BW aka Barbara from Boston:

    Life for those of us dealing w/ multiple chronic illnesses is often the same but never boring. Life is always throwing curve balls, and increasing the freakiness we live w/ on a daily basis. It does feel like sh0veling shit against the tide, and when a little one is involved it must be overwhelming on an almost daily basis. i hope you never quit blogging , Tiff. its good to know how all of you are faring. Your photographs and writing skills are incredible. Wish there was a way to make it all better but in the meantime you are one of my favorite people and your family as well. Hang in there and ignore the haters and any detractors. <3

  • keleigh:

    I always read your blogs and follow your circus :) I find it humbling (to say the least) !! Im not alone in thinking you should keep blogging..

    I too have an 8 year old sweet little warrier who has a chronic illness ( sudden liver failure at 4 resulting in transplant) and although we dont spend anywhere near as much time in hospital (particularly westmead) as you guys do, I can relate to and empathise with you every step of the way. I think you are amazing, infact I know you are!! :) I know what it takes to do what you do and the struggle it takes to keep ‘fighting the good fight’ to be the voice for your baby because it is your job, even though all you want to do is run… My heart breaks for our princesses :( for the fallout of what this does to our lives…

  • keleigh:

    I always read your blogs and follow your circus :) I find it humbling (to say the least) !! Im not alone in thinking you should keep blogging..

    I too have an 8 year old sweet little warrier who has a chronic illness ( sudden liver failure at 4 resulting in transplant) and although we dont spend anywhere near as much time in hospital (particularly westmead) as you guys do, I can relate to and empathise with you every step of the way. I think you are amazing, infact I know you are!! :) I know what it takes to do what you do and the struggle it takes to keep ‘fighting the good fight’ to be the voice for your baby because it is your job, even though all you want to do is take them and run… My heart breaks for our princesses :( for the fallout of what this does to our lives… People used to ask me ‘how do you do it?’ and I used to tell them that I have the easy job because Im not actually doing anything, the true hero was my daughter, the least I could do was pretend to be brave!! :) And I am, as are you… so are our girls because of that :)

    Hospital life will send anyone crazy, blogging is probably all that keeps you sane, so dont stop for anyone except youself!! There are few pleasures in the world so hold onto this one because you’re great at it!! I dont normally reply, I dont know if I e er have actually? But I saw your post about Ivy wanting to be ‘normal’ :( Then I went back and read this entry as I had missed it and HAD to reply because I realised that you are actually the only mum that I have regular ‘contact’ with whoeven has a slight clue of what it is like for me… I need that, I find some kind of comfort in having you to relate to, like I’m not alone in thinking all the things I think about the whole crazy situation that my life can sometimes come to be… That the anger, confusion, distress, helplessness, emotionally exhaustive stress! Gosh, so much of what you write! It’s simply needed.. I need it I suppose because as ironic as it is, it makes me feel like I’m normal………….. So thank you :)

    Sending my best of best wishes to you and your gorgeous girl :) good luck with the doctors,dont let them push you around, I know they like to think they run the show..but this is your circus, remind them of that xx

  • Anna:

    I don’t read your blog because I want to be enthralled by exciting stories of new adventures & outrageous antics.

    I come & I read because I care about you & Ivy & what you’re going through, and i want to know what’s going on. That’s why I visit; if I wanted the above, I would go to a different blog. Your blog is about you & your family & what you write about is your reality. THat’s what we come here to read.

    We’re on your side, TIff. If anyone comes along who isn’t? stuff them. THey can find another blog that suits them. This is YOUR page, for you to be YOU.

  • Kat:

    I am glad you received so much overwellming response to this post. I have missed a month or more of posts and just catching up.
    You are never boring, you have a talent for capturing your life in such a way that I feel the emotions, the frustration, the anger, the hope and most of the love.. I’ve read your blog for a few years, my own son having been chronicall ill as a baby, I know some of these emotions and others I can only imagine. My feeling is if the blog give YOU joy and sanity ..please keep writing and sharing..you will always have readers who don’t find you boring..

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