Thursday, 1 November 2012

Difficult times

As if living under a cloud of uncertainty of your child's future is not bad enough but doing it with someone you feel sometimes doesn't get you at all makes it even more difficult. I often wonder what goes through my husbands head sometimes when to me it seems so obvious what needs need to be met. I don't want to spend this blog entry airing our dirty laundry but sometimes i just get so frustrated. And i know deep down inside it truly has nothing to do with him but more about how bloody hard this whole situation is. How fricken painful it is and even when i think I'm managing, inside I'm really crumbling. I feel like I'm crying on the inside and spend my day filling my body with tears and only one little thing in the day needs to go wrong, it can be so simple and I'm a dribbling mess.
So often its my partner who I feel is doing 'it wrong'. I'm sure he's dealing with all this stuff In his own way but I so wish we understood each other better. I wish he knew when I needed him. How important certain things are to me And truly understood why. But we are so different and I've no idea how to work around that sometimes when so much else is going on. Once upon a time i could, we could. But now things are different, harder, painful and just so damn difficult to manage and deal with. I know we will get there, we have to but shit it is no easy task.

Jayden didn't vomit this morning and I've heard nothing from either oncologists. I'm sure nick is probably over run with stuff to do and no doubt jaydens case is no longer a priority and I understand that. It's difficult though as he is a priority to us. He's my first and foremost priority. I don't know exactly what to do next other than wait. Wait and hope.

He's been a little cranky today which no doubt is a little of normal two year old behavior and a lot of being unwell and I'm sure, truly has had enough. I for one am so sick of seeing that broviac out of his chest and wish they could speed it up to remove it. We enquired about it yesterday with hospital in the home when they came to our house to change jaydens dressing. It all seems a lot of unnecessary pain to be had by him and that's frustrating to watch being his mother. Apparently they are so busy at PMH and the earliest he can get it done is in another two weeks? We are gutted as I so want him to be able to have a decent size bath and be able to go swimming with us, now. It also means there's the ever present risk of the line getting an infection and we really don't want that. So the sooner it's out the happier we will be.

It's the afternoon and a few hours later. I've had another disagreement with danny over the same shit. I just can't get him to see how I feel and it's frustrating. I feel beat. Some things are so simple but we make them so hard. During my whole life I've listened to my heart, what it tells me, what I need. I wish that Danny's heart told him the same things, but it doesn't and that's where it gets hard.

I want to end this blog on the lightest possible note I can even though right now that's not how I feel.
But last night we took the kids trick or treating and it truly was the best thing I could have done given the day I had. Jayden was hilarious and had a blast. The kids were all so happy to be out and knocking on people's doors to get treats, it was truly magic and put a big smile on my face. Just to see them happy and smiling, it doesn't get better than that. Thats what gets me up in the morning, and through the day.
- Posted using BlogPress from my iPad

3 comments:

  1. Leisl

    You and I met not long after Jayden was diagnosed in the RMc room in 3b.

    I am sure my wife feels the same way about me sometimes,(maybe a lot of the time).

    The truth is as Dads we cry, we get sad, we worry for our kids and we still love our wives to bits.

    As fathers, society expects us, unfortunately, to see it as our job to try to hold the shit together when everything around us is falling to bits, and the world we know and love seems so fragile.

    This may be why we seem strange, alien or distant and uncaring. We are none of these things, just different, sometimes in a bad way and other times in a good way.

    We love our wives and our kids, and always remember we hurt just as much as mums do, and feel as powerless as mums do.

    I think in the situation we are in, we all forget to work on our relationships, because something more pressing is consuming us and wearing us out.

    You sound like wonderful people with gorgeous kids, and I so wish I could do something to make it better for you.

    Best of luck to you all, and give your boy a big hug.

    A 3B dad

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  2. I am a 3b mum too and thank you from me, for writing that, 3b Dad. Women and men think and react so differently but we all hurt the same.
    My 12 year old said to me once 'mum, if we all just remember that we are all hurting, just the same, and love each other, we'll all be ok'...
    It's just such a pity all the other crap with life just keeps going on too...
    Love to you Leisel. And love to you too 3b Dad.
    Xx

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  3. On our first day on the neurosurgery ward back in 2010, as we waited for Gav's surgery to take place, I met an incredible nurse who was also a cancer survivor. She was my guiding light. One of the first things she said to me was that I had to work, really, really, work on my marriage. She stressed how many relationships don't survive this type of illness. It was hard to understand then...
    Now of course I see how you become polarized as a couple. I became Cancer Mum, taking care of everything Gav-related and handling his day to day stuff, and my husband became Mr. Practical aka Bringing Home the Bacon. It's not to say that he didn't suffer too while we were going through treatment, but he definitely has had a different experience post-treatment. He is able to shelve his fears a lot more easily than I. I have whole months of anxiety-ridden what ifs. He chooses not to worry until there is cause to worry, whereas I sometimes lie awake at night analyzing every little movement my son made day.
    Maybe that's a male vs. female thing - I don't know. But I do know just how you are feeling and hope that things soon take a turn for the better for you. This is a period of huge adjustment and it is painful. Huge hugs to you and your family too - be gentle to each other.
    Also hoping that you get that appointment to get that line out. Ugh, the fear of infection and dressing changes, yikes! We also had to wait four months final discharge to get Bean's line out - thought you might be curious to read about that event, it seems a long time ago now but was a huge thing then! Here's the link:
    http://abeanslife.com/wp/676/sayonara-cvl/

    Lots of love to you!
    Erica

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