Monday, 22 July 2013

Jayden went to gymbaroo today, the first day for the term. His brother and sister came too as school isn't back until tomorrow. Was really nice for him to have them there with him and he was so much more confident knowing they were right by his side.



After the session was over we had a drink at the cafe then off to the library then home.



So nice to spend time with my three rascals. Back to school tomorrow and not looking forward to that. I'm now sitting listening and watching my kids play together and it's definitely without a doubt the best sound in the world.
Seeing them together always has that double feeling, first of happiness, then of sadness. Never goes away.

The other day I had the pleasure of meeting a lovely lady living a nightmare of her own and the feeling of being understood by her was comforting. We were able to talk about stuff that only people who have lived this would understand and to share stories, emotions and fears was truly a relief. So often I have to keep these thoughts and feelings inside and it was so nice to not have to and to relax with someone who understands.

She told me a woman had said to her once "oh, your the one with the sick child". Upon hearing that I immediately felt defensive for her and annoyed at the woman who made such a silly comment, but i also have come to realise and know, that nobody says things to deliberately hurt or upset someone in this situation they just don't know what the right thing is to say. However, what it did highlight to me is that whether we like it or not "we are different" and that she merely pointed that out by her comment: "Your the one", in other words "your the different person, the one not like us". And, she is right. we live a totally different life now that's filled with constant anxiety, living ever second on high alert, fear of the future of our children and grieving everyday for our previous life. We know longer can chat about the simple goings on without hurting inside that life is no longer simple, our lives have taken a huge turn and the word "simple" doesn't describe it at all.

And, When we do chat about stuff to people we always have that underlying pain in our hearts about our lives that simply never goes away. Today for example I was talking to a lady I recently met who had a baby not long before. I asked her how everything was going and she told me her child is now seven weeks old and so said "the hard bit is over". As I listened to her I remember Jayden at seven weeks and probably thinking something similar but for me, that was the easy bit and I had no idea then that the hard big was yet to come. I walked away with that pain in my heart. its always there but certain conversations, experiences, memories make me even more aware of it and the feelings of sadness are immediately bought to the surface. I jumped in my car with the coffees I just bought and sat there for a while with that feeling. Took a deep breath in and drove home.

At gymbaroo I was talking to a lady and she was telling me about her kids and again I feel that pain in my heart. No matter what I do I'm reminded and its truly a challenge to keep it from taking over my every thought.

So when I got to talk to this woman the other day who knows what this feels like it was good. Just to be understood, to not feel like your boring someone with your woes and just to be able to hang out with some who "gets it".

I read recently that "when the unthinkable happens, most of us long for a community of people who understand what we're going through." This is true for me. For when I am with someone who understands I feel my most comfortable, the closest I can feel to 'normal', my new 'normal'.

It's late now and I'm sitting in the kitchen and everyone else is asleep. We had wonderful news last week that Jayden's scan was clear but I'm sitting here now with the same anxiety and worry I had days before. It doesn't go away. Yes, I'm super grateful and happy Jayden's scan is clear, oh my god I'm so relieved words can not truly describe that elation, but its not over. I know that. And it's only if you live this life do you really understand that. My mind is set onto high alert, high anxiety and worry. As much as I wish it were different, it's not. As much as I wish I could switch those emotions off, I can't. I'm a mum and this is my child. Nothing is going to stop me worrying about him, and I have very good reason to.

On the night of the MRI results at dinner when we do our favourite things we had also added "what are we grateful for?". As the question went round the table and the answers came, the obvious one "Jayden's clear MRI" and when it came to Jayden's turn he said "I'm grateful for you mum". I just wanted to burst into tears right then. for i am so grateful for him and his brother and sister.
I just love them all so much.

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