In reality.
I always worry after I write a really angry post
what I should write about next.
Sometimes I think that whoever reads this blog must think I am wholly unbalanced.
It’s not really like that.
I might follow up a sad, mad, melancholy post with a happy post
because I want to keep things moving here
and in life still be simmering away, unable to rid myself of my awful feelings
and other times I move quickly through my bad moments and so a happy post is very logical.
In reality, my moods don’t really swing all that much.
I’m not really as crazy as I seem.
+++
I read somewhere that you should not write when you are angry.
Or drunk.
Maybe that’s true
because I have felt all kinds of guilty since writing my imaginary letter to the immunologist.
In my mind I am all kinds of brave
but in reality I am a coward.
Case in point: this afternoon I allowed the paed to talk me into giving Ivy the exact medication I was up in arms about this time last week.
He sat on the other end of the phone and almost word for word repeated back to me the same conversation about the prescribed antibiotic
as the immunologist had
and I wore that.
In my head I was big and strong and advocating for my daughter,
telling him there was no way I would ever comply to a med that makes her physically vomit
but in reality I felt as though I had no choice but to agree
backed into a corner
and yes, cowardly.
Afterwards I sat there and wondered why I was so pathetic and not strong.
Self loathing: I am, if nothing else, very good at that.
On a side note, I’ve not been drunk ever in my life.
Not once.
Maybe I’m missing something, who knows.
+++
For those of you concerned for Dave and I – we are okay.
We always said that if we could make it through the death of our son,
still together,
still hand in hand,
then we could make it through anything.
The reality is that this is harder than the death of our boy
because this is our living girl,
for whom we cannot make it better.
Yes, decisions surrounding death are hard
but when your life is consumed by decisions that may make your child just sick
or very sick
every day, week, month, year
well, death has nothing on that.
The act of death is final.
This never ends.
We sifted through the mire of last week.
We forgave each other
and we learnt that if nothing else, we needed to stand united in whatever this is.
A war,
a battle
because there is certainly no peace flag flying;
there is no love between doctors and parents here.
Just mistrust and betrayal
and yes, that sounds very dramatic and over the top.
I’m emotional
and I’m only human
and I am hurting.
I’d like to say that I am very karmic with everything now.
I’ve breathed deeply and pushed my negativity to the universe.
Reaistically though, it doesn’t take much to make the fire in my belly light and the acid rise to my tongue.
I am still so angry about, well, all of it
and conceding today to the push of the medical professionals
leaves a bitter taste in my mouth.
Not quite palatable.
Reality bites some days.
I think that is what most would refer to as being LIFE, Tiff. It’s up and down round, upside-down and often with things and people and situations that we don’t like or feel is right but often we need to do what we don’t like or think is right – there’s no easy choice.
But I for one, don’t believe you are a coward – if you were, you wouldn’t have the little girl – you wouldn’t be the mother or aunt that you are – consistently dancing the beat of mother, protector, nurturer and friend.
I hope that you’re in a better place soon and that the girl will be safe and well too. Fingers crossed. XX
I am glad you & Dave are ok . I am glad you are in a better head space too , sort of …but I am sorry you are hurting.
I know you are the best advocate for Ivy and that if it came to it you would roar and fight like a lion to protect her.
I hope you get some resolution for her ongoing issues and the Drs pull together.
Much love xxoxo
I have been gone for so long from the blogging world… Just wanted to comment and say I hope you get the answers you need, want and deserve for your daughter. I, myself, was diagnosed with Multiple Sclerosis in Dec 2009 and have gone through so many of the emotions that you describe in this post. I am trying to get myself back into life and worry about my children’s wellbeing as a result of my own issues.
I wish you the very best for your family. Hang in there!
Tiff, nobody thinks you’re crazy (says she who worries all the time about coming off like a nutter). You carry a big load every day and you have to release some of it periodically – that’s just the way it is. You must be feeling as if you live in fight or flight mode constantly. Always on the alert. Your response is not crazy … it is very normal.
Thinking of you guys, as always.
Love you all xoxox
lol If I publish a post I have written when I am angry I need to edit all the “fucks” out of it the next day. I wrote a post when I was furious once and the next day I removed thirteen superfluous fucks but left in another six.
Once I have pressed publish and the first comments start to come in I am generally feeling ,much better and am easier to live with.
Dont worry about it lovely, write to the readers here who are your friends and we will always respond positively. Now I am off to read the angry post because I havent been here for a while. Love to you
I find as soon as I press publish, a lot of the anger drifts away. I’ve said my piece and then I can get on with things.
Love . xxx
Not to make what you go through not seem important, huge or an everyday battle…
but i think if we all be honest, no matter what we have going on in our lives,
we all have moments when we want to scream to the world, tell loved ones to piss off, forget all our responsibilites and do so for a few days..
we all have an hour, a day or days when we just feel blah n like i dont give a crap anymore…. but then we pick ourseleves up, we aplogise only for the moments we feel we need to, lets face it, some heated rants are true n no we wont say sorry for that.. we pick up the broom n get the chores done, we smile and play and we live on……
I think all of what you feel, the way you deal with things….. is all perfectly fine, normal n human!
I think your amazing for saying how you feel, cause most wont.. most wont even be honest with themselves.
Cheers to you Tiff for being you xx
I was going to tell you you’re allowed to be angry, that having a sick kid has got to be the worst thing that can happen, that the way you get through it – as a human being with flaws and feelings – is amazing because of the integrity and strength you show despite all the bullshit and challenges you have to fight through, but you know all of that. This reality sucks. *hug*
I’m a relatively new reader Tiff, but I read all the way from the beginning when I got here, and the idea that you might be “unbalanced” never occurred to me. You write beautifully, and what you write is real. Happy, sad, angry, its all real.
Don’t feel weak for not standing up today. Some days we just can’t. It doesn’t mean that we are weak, it means we are human.
You can only do what you can do – and this, well, it is what it is.
You are doing the best that you can do – and no-one can ask more of you than that, even you.
Sending lots of love….
No, you are definately not unbalanced, just for once again, asking that the doctors listen to you as Ivy’s mum and respect your knowledge too, and don’t ignore the fact that your predictions are based on that knowledge.
Your decision, however unpalatable, to concede after all to the combined efforts of the medical professionals, is in no way cowardly. It is simply proof, once more, of your convictions and another desperate attempt to show them they need to take notice, and look again for other viable alternatives for Ivy’s treatment.
Take heart, stay brave and don’t give up the fight to make them see that you are just as qualified, as Ivy’s mum and full time carer, to know what’s best and to be allowed to have your input taken into consideration. xoxo