Wednesday, 31 August 2011

RU Okay Day

Now here's a BLOODY GOOD IDEA!!! (sorry if that's offensive to anyone, bear in mind I'm 100% Aussie)

So here we have a day that is dedicated to asking someone (a workmate, friend, sad looking lady on the bus) if they are okay. 'Bout time I say!

Now as a species us humans tend to want to be around in the up times of someone's life, but in the low points... well... we often lack the balls to stand up and say "Hey, you Okay?". Generally for the same reason that many people don't stop the car to check out the kangaroo they just hit is actually dead and not just laying there suffering....because if we ask (or stop to check) and things are not all okay... it's our responsibility to DO something to try to help the situation. Be it take the critter to the vet or end it's suffering - or with a human type issue... try to help by listening, giving advice or just offering a hug.

To ask if someone is okay, and deal with the answer appropriately is a big deal. You have to actually care.

On September 15th - try to give a damn, forget your selfish instinct to run when you see someone that might need a kind ear. Stand up, take a deep breath and ask...

"RU Okay? Everything Alright?"

Thursday, 25 August 2011

Bella's Blessings - a contribution from Tim xx

I woke up today to an email from a wonderful man I've met through this journey named Tim. I happened upon his blog in the search for participants, followed and in my spare time I have been reading my way through the road he and his little family has travelled. Suffice to say there have been many attempts at getting through it - there have been many tears (from me!)

Tim's second daughter was born with EB - a rare, fatal skin disease known as Epidermolysis Bullosa. Looking at the photo's of Bella you can see she was so full of life despite her illness. Tim has written a book "Bella's Blessings" and has allowed me to use a portion of the book in mine. For this I am extremely grateful, his support for my project means alot to me. On a very positive note, he and his gorgeous wife have just welcomed another addition to their family - a beautiful little boy, Julian - CONGRATS GUYS!

I strongly suggest you drop by Tim's blog and have a read. I've discovered one of those rare and precious people who are just so full of goodness that you wonder why they were put through such hell.. Tim and his family have taken what life has thrown at them and done beautiful things. Sharing his little Bella with the world through his blog and his book is just one of them. Here is a little family that upon getting to know them, you wish them nothing but love, light and good fortune.

Here is a small section of what Tim has given me:

"Dennis soon left, and Ang’s mom came to the hospital after hearing the news. Before Carolyn arrived, we had a few minutes alone together. We both tried to remain strong and focused. However, the nine hundred pound gorilla in the room made that difficult. I know that I buried my sadness as deep as I could. I tend to wear my emotions on my sleeve, and I really didn’t want to show it this time. I thought, “I better remain busy.” So, I told Angelique that I would head back to the NICU to be with Bella once her mom came up.

Before heading to the NICU, I went out to the car to get our bags. On my way to the parking garage, I let out one, loud, concentrated scream. I usually suppress my anger, but in that moment I was just so mad at the Universe for what had just transpired that I gave myself permission to “get it out.” Why me? Why us? Why Bella? Then, I got my shit back together. I realized that I didn’t have time to feel sorry for any of us. I had a ton of calls to make, I had to get the bags back to the room, get over to the NICU, then get back to my wife. None of that would be any easier feeling like a victim. Playing the victim would just sap whatever strength I had left in me.

That may sound noble and all, but I felt so far in over my head that I had to just stick to what was right in front of my nose. I couldn’t comprehend the implications of EB, heck – I had never even heard of it until that very evening. I just had to literally keep putting one foot in front of another. Through most of the first week, I couldn’t think past two hours into the future. Meals were totally out of my mental ability to plan for. Thank GOD Ali was in such good hands with Grandma and Grandpa. My cognitive capability was crippled, and coupled with virtually no sleep, this made for some tough times between the ears."

Bella - didn't she shine :)

Friday, 19 August 2011

A DAY OF HOPE...(only a day too late...sorry)

Yesterday was fairly manic and I desperately wanted to post this then but no matter how clever I am, I still have not figured out how to go back in time (though when I do...phew, I'm going to be rich-rich-rich Mwahahahaa)

So instead, because I think it it belongs here I am posting today...

Yesterday was "A Day of Hope" and this was being shared around facebook... anything that gets people talking about these things, I think, is a good thing.  There were some beautiful comments, both from people who had experienced the pain, and others...  So, here I am sharing and doing my bit to bring things that are often pushed to the edge of conversational matter to the fore.  Wouldn't it be lovely if one day these things can be talked about openly, instead of being left to cry about in the darkness of the night after spending the day pretending that you're fine..

We were encouraged to share these images, and here we are (though I am aware I am most likely preaching to the choir)

These things are worth talking about (even if it's not the right day :P)

To find out more -

Wednesday, 17 August 2011

The small people are often more clever than us

This is beautiful and I just had to share it..made me want to go wake up my son and give him a hug..

"I loved you the minute I heard you were coming. I loved you the minute you were born. Then I saw your face and fell in love some more. You were only a minute old, but I knew I would die for you and to this day I still would. When you choose to have a child you make a conscious decision to allow your heart to walk around your body."


--One day your life will flash before your eyes, make sure it's worth watching. --

This quote gave me a kick in the bum to be honest. How much time do we waste thinking about doing something but often never actually make that next step? So far, I've let too much of my life slide by just being not DOING....well, the time has come ladies and gentlemen... the time has come.

This book, is the start of my actually doing something. A thought, that had been sitting there being turned over and over for an age then finally, with a little encouragement, extracted from the dreamy area of my life and bought out into reality. It may be a hit and equally so it may be a flop. The process will not be easy, I'm sure I will encounter many roadblocks where I wonder if all the heartache and invested time is worth it. But nothing worth having or doing is easy right?

DOING and not dreaming or thinking is scary. This idea of failing is terrifying. But hey, we get one shot at this thing called life. Why not give it your all.... lets take a page out of our childrens book... kids will give everything their all without thinking of the what-if. IF they fail, they may dwell on it for a small amount of time, but it won't be long (I guarantee it) until they've thrown themselves head first into their next dream with just as much enthusiasm.

We can learn so much from our children.

Tuesday, 16 August 2011

A new baby, gastro and the flu - What a week!

So the story begins with a little suit.  Perhaps one like this, perhaps not, who knows.  But there was a longing to fill it with another small person that would up my beautiful sisters family to four.  One gorgeous doting Dad, one beautiful loving Mum, one of the sweetest little rays of sunshine ever created and then someone to fill the suit and the gap in the family (after all, there was a spare bedroom that no one much stayed in - it just made sense to use it)
Within a very (very) short time the "good idea" became a small, though rapidly growing, distorted little jellybean type shape on the doctors screen.  There was much joy and celebration - a little miracle was growing.

From the time she was aware there was a baby growing inside her Mummy the little ray of sunshine showered her mothers tummy with kisses.  She marvelled at her brother/sister when it wiggled inside stating things such as "baby moooooves"....incase no one else could see.  She took visitors by the hand to show them the babies nursery and point at the places the baby would get it's nappy changed and sleep or just hang out.  She carried a dolly with her everywhere and would show people how she would hold the baby when it came and how she would kiss it.  Of course, you can never be sure what goes through a 22 month olds head.  We just had to hope that she understood the new baby wouldn't be as quiet as hers, and would give her competition to some degree for her Mummy's time...
We needn't have wasted any time on worrying.  From the moment they met this is what she wants to do to her new little sister.  The little miracle.
This is the newest little member to my family.  My perfect little niece Miss Evie Jean.  A little dot of a sister to the previously mentioned awesomeness that is Miss Riley Ann.

I'm not sure that my sister will even read this, she doesn't "follow" my blog.  During pregnancy the last thing you want to do is be reminded of the sadness that can come with parenthood or the journey to it.  But incase she ever does.... Ev, Thankyou for these babies.  Thankyou for letting me be a part of their lives, for allowing me to be an influence.  Thankyou for being such an amazing mother and an inspiration to me.  I see you - my baby sister - with your girls, and it makes me proud to know you.  Your patience, kindness and never ending love for your children shines through and you are, without doubt, one of the most amazing women I have ever had the privelidge of knowing....and I get to call you my sister.... Thankyou for sharing your love with my son - I make sure he knows how lucky he is to have been blessed with such beautiful aunts and uncles.  I promise to be the best aunt I can be to your girls.  I know if they grow up anything like you.... they are going to be incredible people who will be able to do anything they wish to.  I promise, for you and for them I will always be...right... there...

These two little miracles are lucky to have come into existance without a spot of bother.  The miracle of birth is just that...a miracle.  There are so many things right from conception all the way to post birth that can go wrong.  Luckily, and thankfully my sister and her husband have not experienced any such trials.  It's so easy to take having children for granted - I am a woman/man and it is my right to be able to reproduce easily and without incident.  Unfortunately it is not so.  But this week especially I have been grateful that these little people were allowed through complication free.

This is why I have been (finally) able to write a post.  My own little miracle, sick with both the flu and gastro...not a good combination I can tell you!!

Wednesday, 10 August 2011

It's not that I'm being lazy - far from it actually..

I'm one of these not so tech savvy kind of people.  It's not because I'm old, I'm only 31 (once, this sounded ancient but now I'm there I've decided 80 is old and I have a while before I get there)  It's because I'm stubborn.  I get annoyed at how quickly things change.  The "new" thing that you've just learnt how to use after owning it for five months is no longer the best, newest or most appropriate.  I spend every day learning something about parenting or my work - things that I HAVE to learn about.... WHY would I purchase something I would have to spend lots of time learning how to use and then as soon as I've mastered it - upgrade and start again??

This is why I have one of those old flip style phones that calls and texts and that, thankyou ladies and gentlemen, is all *takes a bow on behalf of the simplistic device* 

However, lately I have seen the beauty of the little phones that are like mini computers.  You know, the ones that the people you are trying to converse with in the real world are using to coverse with people on the other side of the globe via the world wide web all the while not looking at you, but nodding and uhuhing in the sometimes appropriate places.

It would be handy to check my emails, or update my blog - as I don't often get time to stop and do such things - everything is done on the fly.  How many blog posts have I written in my head this week?  Ummmm.... many! How many have made it to the blog... erm.. *twiddles thumbs* ...

I have a voice recorder which my beautiful husband purchased to help me get my writings out of my head and into the computer. I have now tossed in my handbag and from now on, when I feel a little inspiration coming on I shall speak to myself (as it's usually whilst driving) and type it in later. 

That's fairly random information you probably didn't need to know.  Just letting you see that I am human, and will not always (most likely) be talking about this book - outside of it, other things happen. 

On topic however I have had many emails this week and some half finished "Is this what you were after" stories.  Kylee who blogs here has sent me half her journey with the beautiful Miss V.  It took me several tries to read what I have received so far.  I read, teared up, got coffee, read, teared up, folded washing, read, replied to email, and finished it.  Kylee said how hard it had been to recount those days - as we had expected it would be.  Yet she has done a beautiful job. 

Here, is a tiny extract of Kylee's Story - "Are you okay?"

"Those 3 little words…..”Are You OK?” I thought I was OK. As my Obstetrician was explaining to me what he had seen on the ultra sound, I thought I took it all in. I was fine I guess with the information he was giving me, up until I got up to leave, and he asked me “Are you OK?” That was the moment I burst into tears, and just cried and cried and cried. They took me into another room where one of the midwives was and called my husband Marcus to come and drive me….while I waited I was offered a cup of tea…..that’s all I remember…..when Marcus got there, Jamie came to speak to him to tell him what he had seen on the ultra sound."

It's funny isn't it.  That we can often hold it so together....until someone asks if we are okay.  (Or in my case, until I see/hear my mum!)

Saturday, 6 August 2011

The grass is never greener...Heathers story of her angel Zack

Just a quick post today.  I want to share this blog post from Heather, it will make you appreciate every second you have with your precious child - with special needs or not.  We are, for every second we have them in our lives, blessed.  Heather, thankyou for agreeing to write your story for this book - I know it will be hard to write, your contribution will be very much appreciated.

Sending you love and hope for peace.  There is nothing that can fill the hole Zack left in your life, no words can make it better.  I hope that in time you can really feel again xxxxx

Wednesday, 3 August 2011

From little things, BIG things grow!

It started as a good idea.  Formed in the back of my mind, constantly pushed aside because I have been "too busy"...  But then I scribbled on a piece of paper and it seemed do-able.  I spoke to a few people in not so confident whispers and they said "Do it, we'll contribute".  I posted in a forum I'm a member of and got a great response.  Then, somehow - it became real.

Some very exciting things have happened this last week.  I have been getting a several emails a day from people who are wishing (so generously) to share their stories.  Already, I have three completed stories in my hot little hands.  One is a 22 page journal which I am working my way through (box of tissues beside me) and will use appropriate sections of in the book.

I am feeling a little overwhelmed by all the support and peoples willingness to talk about the moments that changed their lives.  For every one of you that has shared this, has offered to contribute or are reading this now I thank you.  From the bottom of my heart, thankyou for helping me make this happen.

In the next week or so I will be popping a list of questions that you can answer if you are wanting to write but just have no clue where to start or what to say.  So keep your eye out for that.

Enjoy your night (go hug your children)

Trine xxx

Monday, 1 August 2011

I have discovered "Spare Time" (yes, it warrants capitals)

"Spare Time" exists somewhere between the hours of 3am-6am.  It's peaceful and I can think suprisingly clearly.  I am not as exhausted as I am at the pm side of the day.  There is no television or radio to try to think through.  There is nothing other than sleeping I should be doing.  I can sit, read, research, think unhampered.  It's quite a pleasant feeling.  However, there was not enough of it this morning to construct the post I wish to so I shall try to make that happen tomorrow at spare time o'clock.

Have a wonderful day, will update with all the exciting things that are happening either later (can there be two "spare time" episodes a day?  Is it even possible!??) or in the morrow.