Thursday, May 10, 2012

And So I Write...

Someone asked me recently why it is that I usually only blog when I have sadness to talk about.

I guess the main reason is because I blog as a way to release my emotions.  

I only have a couple of real life friends who I can talk to, and none of them are really 'local' so most of our conversations are via phone, Facebook or email.  

I can't really talk to my family, not properly.  A lot of the time I feel the need to shield them from the reality that is our life, so they tend to get a readers digest version of everything that is going on.

My husband is wonderful, he has become so supportive and is generally right there with a hug when I am down, but even still, there are a lot of things that we don't really 'talk' about.  I think there is this void between us where a lot of unsaid thoughts and feelings kind of disappear to.  They drift into this void, and even though really we both know what the other is thinking and kind of understand the feelings, it remains unsaid for fear that vocalising it will make it really real...  once something is said, it's out in the open and it can't be taken back.

So other than that...  I blog.

For the Harry Potter fans among us, this blog is basically my pensieve.  I take thoughts and emotions from my mind, I process them and I try to deal with them by writing them down...  so I can go back later and reflect upon them.

Why I share them with the rest of the world...  well...  I guess I don't really know. I am not really sure how far Nicola's story has spread or how many lives, apart from ours, that she has touched...  but I guess I just don't want to keep her story to myself.  I want to share my beautiful girl with the world...  and I guess it's comforting in some way to know that 'someone' is 'listening'...  even if I don't know them, can't see or touch them, just to know that there is someone that cares enough to take the time to read what I write.  Whether it be for me or for Nicola...  'someone' is there.

Most of the time, living this life is very isolating.  I spend a lot of time feeling very much alone.  We just don't seem to slot into any little box.  Unlike most children with additional needs, Nicola has a mix of physical, medical and behavioral issues to contend with. Unlike most children with additional needs, Nicola now has the added complication of cancer.  Unlike most children with cancer, Nicola has the added complication of a life time of incredibly complex additional needs.

We seem to have ended up chivied off to the side into this little niche all by ourselves...  and it's a very lonely place to be...  

Most of my 'life' gets sacrificed in the names of my children...  I can't remember the last time I went to the hairdresser, my nails look wretched, I haven't bought new clothes in eons, my make up is so underused that my mascara expired before I even removed the plastic wrapper!  The last time my husband and I went out for dinner or to the movies or had any kind of alone couple time was so long ago it was before we even moved back to Townsville and we've been here for over two years...  we basically give up our own luxuries to ensure that our children have what they need to keep them going...  so without everything else, all I have left is my thoughts...  

And so I write.

I have dozens and dozens of posts that remain unpublished and most likely always will remain unpublished, but for the most part, this is my outlet, my release.

I try to write as often as I can...  but mostly I write because thoughts have been built up so much that I need to clear some out...

And so I write. 



t r a c y said...

you're a very good writer! i have a great deal of empathy for you, even tho' i can't really imagine what it's like for you, all the things you are going thru' with your daughter, and the sacrifices you have to routinely make, but i want you to know that i'm honoured to read your words, and to know the story of Nicola. there's a place in my heart now that belongs just to your family.

Sue P said...

I came across your blog while searching support groups for families with special needs children and I have followed ever since...I have found your writing inspiring and's not always sad....AND your writing is so beautiful - you write with such passion and skill. I stop now and wonder how Nicola is as I go about my day. I close my eyes and send love to her and her family, her wonderful mother - all because of your blog. So, keep writing and sharing - because you are sharing a journey that the world can learn from, that the world can find inspiration in and in some way give back to you with our thoughts and our wishes. Whoever felt the need to point out their own perspective, about the sadness in your writing, perhaps have never experienced the pain of loving a child so vulnerable and so challenged as your courageous, fabulous little girl because if they had, then I am sure they would feel the optimism, hope and yes, happy moments that I feel when I read your blogs - even in the hardest of times. Take care and thank you for sharing x

The Polk's said...

I completely understand why you blog! My 7 month old little girl also has Costello syndrome. I found your blog when I was searching for any little bit information I could get my hands on. It is very isolating to have a child with a medical condition, on top of that one that no one knows about! I do not blog right now but have thought about it many of times because there is so much tht builds up in your mind, that as you said goes unsaid. I encourage you to keep on because it is a great release of emotion! It is always said sometimes you jut need to cry, well sometimes you just need to talk! Even if it is with a computer screen :) but atleaat that way you just get all the thoughts out!!

spotted wombat said...

As always your way with words and the way you express yourself brings tears to my eyes. Few may post but many many read. I love you Jo, you are an amazing and inspirational woman and I am lucky to know you

Post Pals said...

Hi, I've kept a diary for years (before the term blog came about) I used to have an open one but now a list of online friends read it, and I write for the same reasons and benefits as you described (on a side note I wish someone would hurry up and invent a working pensive!).

I don't know exactly how far Nicolas story has spread but I'm in England so your family is pretty much global!

A mum of a child with complex problems who also doesn't feel they fit in anywhere suggested setting up a group/message board and reading your blog post gave me the extra post to set it up. I will try and find you via Steph on Facebook and add you.

Thinking of you and sending love from the other side of the world,

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