tag:blogger.com,1999:blog-91864966986117080282024-03-13T11:12:49.182+10:00Princess NicolaA story about dreams for a special little girl.Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.comBlogger113125tag:blogger.com,1999:blog-9186496698611708028.post-29863116274705061702022-08-31T04:47:00.000+10:002022-08-31T04:47:10.101+10:00 The Milestones That Keep On Grieving<p> </p><p><br /></p><p><span style="font-family: verdana;"><br /></span></p><p><span style="font-family: verdana;">Preface: I know it's been a while since I wrote here, and I'll be honest, I wasn't really going to post here ever again... it felt like this should have been the end of a story, but I realised that this is a story that will never end. Chapters may finish, but this story will always go on... This is just a standalone chapter. </span></p><p><span style="font-family: verdana;">======</span></p><p><span style="font-family: verdana;">Everything to do with a child's life is measured in milestones. Right from the moment of conception... trimesters are measured as milestones, birth is a milestone, and then they come hard and fast. First smile, first word, first time they sit up, first time they stand, first time they walk, first time they run. First birthday, first day of school, first tooth, first lost tooth. First dance class or recital, first sports game. They're all milestones that are celebrated, applauded, shared so everyone can see your excitement. </span></p><p><span style="font-family: verdana;">The death of a child doesn't mean that the milestones end, just that they're different. </span></p><p><span style="font-family: verdana;">First day. First week. First month. First year. First birthday, first Easter, first Christmas, Mothers/Fathers day... </span></p><p><span style="font-family: verdana;">The day you reach the point that they've been gone for a year and you realise that a whole year has passed and all these other milestones have been achieved... the world still goes on, even if part of you doesn't want it to.</span></p><p><span style="font-family: verdana;">These milestones are still there. They're not celebrated or applauded, and they're not shared with any element of excitement, but they still happen. </span></p><p><span style="font-family: verdana;">The world keeps on spinning, the sun still rises and sets, and these milestones are silently acknowledged, shared with those nearest and dearest, or just reflected upon in solitude. </span></p><p><span style="font-family: verdana;">Then, all too soon the milestones in death slow down... there's no more firsts, but then it becomes "The Plural". </span></p><p><span style="font-family: verdana;">Year becomes Years. </span></p><p><span style="font-family: verdana;">The world still keeps revolving, the sun still rises and sets, and milestones that should have been are silently reflected upon. Missed first days of school. Missed holidays. Missed birthdays. There comes a point where they've been gone from the world for more time than they were in it... yet everywhere around you, the world moves on. </span></p><p><span style="font-family: verdana;">Then all too soon, or so it seems, a whole new milestone creeps up and you realise that there's a new term that you need to contend with in the journey of grief... "Decade"</span></p><p><span style="font-family: verdana;">And that, my friends, is where I stand today... on the cusp of the decade. </span></p><p><span style="font-family: verdana;">It's been a decade since she finished a year of intense chemo and radiation treatment. </span></p><p><span style="font-family: verdana;">It's about to be a decade since she last celebrated a birthday with us. </span></p><p><span style="font-family: verdana;">It's about to be a decade since the last time all four of my babies were happy and laughing in the same place at the same time...</span></p><p><span style="font-family: verdana;">It's about to be a decade since we got the news that, deep down we already knew... despite the chemo and radiation, the cancer was still growing. </span></p><p><span style="font-family: verdana;">It's about to be a decade since we heard those words. "Nothing more can be done except wait." </span></p><p><span style="font-family: verdana;">Which means... </span></p><p><span style="font-family: verdana;">It's about to be a decade since I held her in my arms and screamed, knowing she was no longer with us. </span></p><p><span style="font-family: verdana;">For some reason, this feels like a harder milestone to deal with. I guess in a lot of ways it is. This is, essentially, the last big milestone we face in her passing. </span></p><p><span style="font-family: verdana;">There's no more firsts.</span></p><p><span style="font-family: verdana;">We won't be here for the century or the millennium </span></p><p><span style="font-family: verdana;">There will still be lots of things in life that we will grieve not celebrating with her... lots of life steps where her presence will be sorely missed...</span></p><p><span style="font-family: verdana;">And every day the world still keeps on revolving... and every day the sun still rises and sets... and every day my heart has a piece that is missing... and not a single day will ever go by that she is not loved, cherished and so very deeply missed... </span></p><p><span style="font-family: verdana;">Just like in life, there comes a point where there are no more firsts to celebrate...</span></p><p><span style="font-family: verdana;">And in death, this milestone is the last of the firsts. </span></p><p><span style="font-family: verdana;">The first decade. </span></p><p><br /></p><p><span style="font-family: verdana;"><br /></span></p><p><br /></p>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com0tag:blogger.com,1999:blog-9186496698611708028.post-18774038133464338052013-10-03T20:12:00.002+10:002013-10-03T20:12:37.352+10:00Green Grapes.<span style="font-family: Georgia, Times New Roman, serif;">I was judged yesterday. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I know that this is nothing new, I have been judged repeatedly over many years, but yesterday it made me really stop and think.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Yesterday I was judged over grapes.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Yes, that is correct, grapes. The little green things, kind of oblong shaped, sweetish in taste, dried to make sultanas/currants/raisins... Grapes. Green Seedless Grapes.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I took the girls out to my parents for a couple of days to let them have some quality time during the holidays and Miss Bella and I ducked into the local supermarket to pick up a few bits and pieces... you know, holiday essentials, crisps, lemonade, ice cream etc. We were walking through the fruit and veg section to get to the important stuff and Bella spied the green grapes, sitting there, glistening so sweetly in the afternoon sun. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Immediately her taste buds were fixated. "Mamma, can I get some grapes with the $10 Grandad gave me? I just LOVE grapes and I promise I will share them with Grandad."</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Well, who was I to say no? Here's my little 6 year old daughter begging and pleading, in the midsts of our junkfood extravaganza, for grapes. So, naturally, my answer was "Of course you can sweetheart."</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">This was about when the pink haird kook harrumphed at my baby girl and literally snatched the grapes out of her hand. "You can't eat those! They're from the U.S. of A!"</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I drew in a deep breath, picked up the bag of grapes, handed them back to Bella and as calmly as I could manage, turned around and said "No one locally has grapes available at the moment. They are a fresh fruit, she likes them, so if she wants to eat them, I am not going to stop her."</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Which is when I got told that the problem with the world is parents like me, because I don't instill a sense of importance in my children, I don't teach them about supporting the businesses that support us. I will buy anything I want because I want it, without regard of who is harmed in the process. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I gave her about a minute while we weighed out our grapes and then I walked away, but as I neared the deli at the other end of the store I could still hear her banging on. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">A very kind hearted and sympathetic store employee offered reassurance by telling me that she is always that opinionated and vocal, and not to let it upset me... but the whole situation really made me stop and think as I was driving home.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Every day, in all of society around me, I see people being judged. I open Facebook and I see post after post of people judging each other. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">People who see a snapshot of another persons life and for some inexplicable reason feel justified that that brief moment gives them the right to judge another person in their entirety... to condemn their lifestyle, to insult their decisions, or perhaps even just to insult the person themselves... all the while not knowing anything more than what can be seen with a quick cursory glance.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I have been the person on the receiving end of the judgement... I have felt the stares, heard the condemnation and experienced the criticism.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I have been the parent who was frustrated at a crying baby because I was so incredibly, extremely exhausted and overwhelmed that all I wanted to do was cry, but instead I was out in society because I had other children who needed to be distracted, groceries that needed to be bought and bills that needed to be paid.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I have been the one who walked in to the store and spent Centerlink money on something completely not child related. It doesn't mean that I am a bad parent or that I am neglecting my children... it just meant that every other week when I spent every spare cent on making sure my children had what they needed, I felt that it would be ok for once to splash out on something that I couldn't otherwise justify or afford for myself.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I have been the 'fat chick' in the line up at the supermarket with a trolley full of frozen items that would probably under normal circumstances never actually meet the actual criteria for food, let alone food like substances... I have been tutted at, and been on the receiving end of bad looks and harsh comments because my poor children were being neglected and headed for a life of obesity... yet none of those doing the tutting or the commenting had any realisation at all of what was happening in my life or why I was doing what I was doing.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I have been the one with the messy house, the sink full of dishes and the laundry full of clothing who has friends that shy away because they can't handle being in a house where chaos rules supreme.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I have been the one who has comforted my children when they are overlooked for party invites and play dates because we don't meet some unwritten code of what is socially acceptable and what is not.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I have been judged on choices, on appearances, on decisions, on purchases, on words... yet every time it has been a judgement based on just a brief snapshot of my life.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">It has been this judgement that makes me want to be different... I want to think the best of people, to not automatically assume the worst because, just like those who look in on my life, all they see is a snapshot and not a real picture. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Once upon a time it took a village to raise a child, people helped each other out and offered support and compassion, yet now, it seems like it is every Mamma for herself and heaven help you if you dare to deviate from the perfect parenting that society has come to expect from us.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Parenting is not about perfection, it is about love. Parenting runs much deeper than cloth nappies, breastfeeding, organic diets and income sources. Parenting is about learning what is important, then taking those things and savouring them. Parenting is about teaching our children these lessons in life, molding and sculpting them into wonderful, loving, giving, gracious people. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Perhaps this outlook is one that comes with having been dragged through hell and back, or perhaps there is some other mysterious force at play... but I have figured out this much.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">In years to come, my children aren't going to remember if I packed the dishwasher or if there was washing in the laundry... but they will remember that we did cartwheels in the yard, we chased butterflies and we grew pretty flowers in the garden.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">My children aren't going to remember if I cooked them a perfectly nutritious meal that was fat free, sugar free, wheat free, grain free, soy free, preservative free, additive free, and made only from 100% biodynamic organic produce... but they will remember the happy love party where we had lemonade, ice cream and bubble bath's for breakfast.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">They aren't going to be emotionally damaged because Mamma did something for herself once a year.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">God willing, the flip side of this is that I can raise children who see the good in the world, not the negative... that despite the rocky beginnings my children will grow into kind, gracious, loving creatures who treat others as they want to be treated, who learn to not judge a book by it's cover... </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">After all, sometimes the least desirable cover can contain the most amazing stories.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com1tag:blogger.com,1999:blog-9186496698611708028.post-79376913089021857002013-09-25T18:35:00.000+10:002013-09-25T18:35:10.628+10:00Dwelling on the past.<span style="font-family: Georgia, Times New Roman, serif;">It's nearly the end of September. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I'm not quite sure how that happened. It feels like the days are all blurring into one now.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">It was Nicola's birthday 3 weeks ago. We knew how hard it was going to be, emotionally, to face the day, so we did the thing that made the most sense... we turned tail and rain.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">7 glorious days in Palm Cove. We stayed at Mantra Amphora, in a gorgeous little apartment that overlooked the pool and we hid from the rest of the world.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">It didn't work. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Dealing with her birthday was so incredibly painful, so we did the thing that we did best... we partied. We started with lemonade, ice cream and bubble bath's for breakfast, then we strolled along the beach, paddled in the water and enjoyed fish and chips for lunch. We had cake, complete with sparkler candles and noise makers... then we went out somewhere nice for dinner. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">The only thing that was missing was the one thing we couldn't have, and that was our Princess.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Then we had to come back to reality... and reality sucks.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Last week I was looking through all the photos we took while we were at Disneyland, and it was so hard to comprehend that that was 12 months ago. It has been a little over 12 months since we set foot on the hallowed grounds of the happiest place on earth... and indeed, it will forever remain the happiest place on earth. It is still, and will forever more be the last place that we were together as a family and truly happy. We shared so many memories, so many moments and so much love... we were truly and most incredibly blessed to have such a phenomenal experience, and for that we will be forever grateful.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Then we came home and it all turned to pooki. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">12 months ago yesterday Nicola had her last MRI. We already knew the truth, the cancer was spreading again. It had been since June/July. During her last chemo session in August even her oncologist in his round about way intimated that it had increased in growth... but he knew what we already knew... to scan early would change nothing except our chance to travel. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">So we plastered a smile on our faces, hiding the hurt and anger in a deeper place and went along on our way. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Before her last MRI we had already been making plans... we knew the scans would show growth within the primary tumor, and we had a tentative plan in place... scan on Monday, results on Tuesday, Wednesday and Thursday to get ourselves organised, Friday to start driving to Brisbane, and Monday admission to try second chance chemo.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">To say our plans were derailed is something of an understatement. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Speaking to our local pediatric oncology nurse I had expressed a few minor concerns that we had had while we were away, and next thing I know we were on the phone to the oncologist in Brisbane. He asked me questions, a whole bunch of questions. I remember making a lot of jokes about things... I blame it on the jetlag!</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I remember joking that Nicola's decreased urine output was because the nappies in the US were so bad that she had been saving up all her wee until we got home!</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">My Mum was sitting in the recovery room with Nicola, and with my sister who had just had day surgery that morning... they had come to visit us before Mum took my sister home for sleep.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">I remember after talking to her oncologist I walked back into the small room. I don't know what the expression on my face was like, but it must have been frightful because my sister dropped her drink and my Mum started crying. I sat down and I couldn't breath. My chest hurt, I was gasping, I couldn't breath, I couldn't talk.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">That was the day that a massive freak storm hit the South East corner and we couldn't transmit any of her scan images to Brisbane. Her oncologist told me he would stay until late, and if he hadn't got them by 10pm he would be back early the next morning.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Taking her home that day was so bitter sweet... my sister, despite her own issues, had volunteered to take the other three girls so that Michael and I could talk, assess, try in some way to comprehend.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Comprehension never came, but confirmation did. 7.28am on the morning of the 25th September we got our final answer. Our daughter was officially palliative. There was nothing more that could be done. The tumor had grown so large so quickly that it was obstructing urine flow. They had even called in the surgeons at 6am to try and determine if there was anything that could be done surgically that could buy us more time, but they were all unanimous. We were past the point of no return. We most likely had been for several months. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">She had held on just long enough to do Disneyland before she fell apart. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">12 months ago today we started our journey descending into the depths of hell. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">It feels so surreal. Every moment is etched into my memory, I can remember every word, every conversation, every expression... the only thing I couldn't count is the tears.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Now, 12 months on, here we are. So rapidly approaching her first angelversary and every day my heart seems to shatter just a little bit more. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Every morning I wake up, I plaster a smile onto my face and I do the very best I can do get through every day. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">But right now, I seem to spend most of my time dwelling on what happened 12 months ago.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">12 months is a long time... but it is no where near long enough, and I don't think any amount of time will ever be 'enough'.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com2tag:blogger.com,1999:blog-9186496698611708028.post-87985940083115386882013-04-26T18:28:00.000+10:002013-04-26T18:28:01.685+10:006 Months Ago.<span style="font-family: Georgia, Times New Roman, serif;">6 Months ago tonight...</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">6 months ago tonight I saw you smile. You were, for a few hours, free from the pain that had plagued you for so long. You were surrounded by the people who loved you, and you were the center of the universe. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Quite happily you went from one cuddling embrace to another, lapping up the love from everyone around you.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">6 months ago tonight we took all your dressings down, we de-needled your port and I took you into the shower. We shampooed and conditioned the few stray whisps of hair that were left on your beautiful little head. We played our soapy snuggles game. We played 'wash the baby bum' and we had soapy tickles.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">6 months ago tonight we dressed you in another brand new pair of jammies. Ariel ones. W</span><span style="font-family: Georgia, 'Times New Roman', serif;">e snuggled you into your bed with your beloved dolly and</span><span style="font-family: Georgia, 'Times New Roman', serif;"> we told you we love you.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">6 months ago tonight you smiled and signed love to us.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">6 months ago tomorrow our hearts were shattered into a million pieces.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">It is so hard to comprehend that you have been gone for 6 months tomorrow. I still wake up in the night because I hear you cry for me. I still wake up and can hear you playing in your bed. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Every day there are a million reminders around me of the fact that you just simply aren't here... and I miss you. </span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">We all miss you.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I miss you so much it hurts... and it hurts every minute of every day. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">6 months on and the pain hasn't gotten any easier... </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I don't think it ever will.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com1tag:blogger.com,1999:blog-9186496698611708028.post-46878602703529931912013-04-12T15:21:00.001+10:002013-04-12T15:21:50.946+10:00Just Imagine...<span style="font-family: Georgia, Times New Roman, serif;">Imagine... </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Imagine for a minute...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Imagine what it's like to hold your small daughter in your arms, cradling her gently, whispering soothingly to her while her tiny body is wracked with pain and nothing you can give her helps.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Imagine what it's like to see her face, a face you have always seen lit up with laughter, now contorted in pain so deep that it resounds in her eyes, eyes that beg you to do something, anything to help her. She hurts and she is afraid, and there is nothing you can do except hold her and whisper to her and let her know you are there.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Imagine watching her sleep, watching her little chest rise and fall with each laboured breath, knowing that at any moment it could all be gone. Every night, you spend hours sitting, watching, fearing that every minute that passes could be her last. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Imagine feeling so incredibly hurt and betrayed by the world because this is happening, because you are trapped inside a nightmare and you know that you are not going to wake up. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Imagine that your world is crumbling around you and there is nothing you can do to stop it, because this is a fight that you cannot win...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Imagine that this is your life... your world, your everything...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Imagine what it would be like to live like this, day after day, week after week...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Imagine now that YOU did this to your child.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Imagine that you gave her toxic drugs purchased illegally on the internet to combat a deadly disease that she didn't have.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Imagine you are the reason that she suffers.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Imagine knowingly and willingly inflicting on your child a life of pain, suffering and misery.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Why?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Imaginary glory.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Attention? Money? Power?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I don't know... but what I can tell you is that this isn't imaginary... this is real, very real. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">It happened.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">A child who was once very bright and healthy is now battling a potentially fatal battle because her mother fed her chemotherapy drugs to make her sick.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I know that this happens from time to time... you read stories about carers in other places who make their children sick... but this is different.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Why?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">I know this child.</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">I know this mother.</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">I trusted her.</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">When she said things like:</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><i>"It's a world no parent should ever have to see . . . a world where you are woken each night by the screams of children in pain . . . where you can hear children vomiting from the other side of the ward, retching so hard because they have nothing else to throw up."</i></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><i><br /></i></span>
<span style="font-family: Georgia, Times New Roman, serif;"><i>"I HATE THIS PLACE. IF I COULD RUN AWAY FROM THIS PLACE I'D RUN A THOUSAND MILES TO BE AWAY FROM IT!"</i></span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I sympathised with her because those statements resonated with me. I knew, first hand, the horrors she was talking about. I have been there, I have seen it, I have smelled it, I have felt it... I have walked those halls and I have lived that life.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The difference being that she did it to her child on purpose... we had no choice. We didn't ask for it and would have given anything to have been sent on a different path. </span><span style="font-family: Georgia, 'Times New Roman', serif;">We didn't want that life,</span><span style="font-family: Georgia, 'Times New Roman', serif;"> apparently she did.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">The impact that this is going to have is going to be phenomenal. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The people that donated to this woman may not do so again out of fear of being scammed, so there will be lots of worthy, GENUINE people who will miss out on kindness and help from strangers, kindness and help that, I know from personal experience, can make a profound difference on a person's life when they need it most.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The parents who reached out to this woman, who shared stories, hugs and small parts of their lives may hold back in the future for fear of being burned again which may leave parents vulnerable and alone when they most need support and compassion.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The staff who were involved may become more skeptical of parents which may make it harder again for parents who need it to get help.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">That is not even beginning to take into account all the other little bits and pieces... the accommodation that was provided to her at the expense of the government, taking away a much needed room from a family who was genuinely in need. The blood transfusions, the drugs provided, the tests that were done, the theater blocks... all of which were taking resources away from a genuine patient with a genuine need... and then there's the support and the charity.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">All resources taken from children in genuine need because of one mother's desperate and pathetic need for attention. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<br />
<span style="font-family: Georgia, Times New Roman, serif;">And I think that is the part that bothers me the most. This woman willingly inflicted on her child pain and suffering that is unthinkable all for some perceived glory... she made friends with families, she infiltrated their worlds... and in doing so, she betrayed trust. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Not only mine, but the trust of every other parent that has been in this situation. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">She has made a mockery of everything that our children have endured. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And for what?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Attention?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Facebook likes?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Money?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I feel like a part of my world has been shattered. I feel betrayed... and I feel phsyically sick that anyone, least of all a MOTHER, could willingly and knowingly inflict this kind of suffering on an innocent child... a child who now, may not recover.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">That is something I don't need to imagine. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">:'(</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<br />
<br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com2tag:blogger.com,1999:blog-9186496698611708028.post-72705635762768864522013-02-05T17:35:00.000+10:002013-02-05T17:35:16.148+10:00Just STFU!<span style="font-family: Georgia, Times New Roman, serif;">I make no apologies for the content of this post or my complete and utter dislike for conspiracy theorists.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">If you don't like it, don't read it's that simple. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Walk away now and no one will get hurt.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Every day... every single day, on my Facebook I see one person after another post these stupid conspiracy theories...</span><br />
<br />
<span style="font-family: Georgia, Times New Roman, serif;">Like Aspartame is responsible for an epidemic of multiple sclerosis and lupus and kill you...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Like Red Bull is a secret weapon devised by the US government to kill you... </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Like drinking soda/soft drink from a can will cause leptospirosis and kill you...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Like instant noodles are covered in wax that will cause cancer and kill you...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Normally I just simply state that it is a hoax, if I can be bothered, and go about my day...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But now my hackles are up and I've got my cranky pants on...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Because I am SICK TO DEATH of the slew of conspiracy theories going around about cancer... more specifically, how to cure cancer.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">See... way back in the middle of last year a particularly rude and obnoxious individual told me that I was the reason my daugher had cancer. I have her refined sugars and flours. I let her have processed foods. I poisoned her. I killed her.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">It was around this time that I started to actually pay attention to the number of stupidly ridiculous conspiracy theories that people are spouting and spruking in regard to cancer.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">For instance...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Cannabis can cure cancer. Smoke it, ingest it, whatever... but Cannabis can cure cancer!</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Eating red meat left to 'cure' in the sun for 90 days will cure cancer.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Drinking barley grass in hot water twice a day will cure cancer.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Eating 13 serves of fresh sugar free vegetables every day will cure cancer.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Most of them I dismiss with a wave of the hand, they're stupid and if people believe them, well, it says a lot about their intelligence levels doesn't it?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But the one single conspiracy theory that is doing the rounds that really, really, REALLY makes my blood boil is the allegation that pharmaceutical companies have a cure for cancer. They know what it is... and cancer can be cured for as little as 20 cents... </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But the pharmaceutical companies have hushed this up because otherwise they won't make any money.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Seriously?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I mean, really... seriously??</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Do the people that spread this vitriol have any idea of how insulting this kind of thing is?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Firstly, it's insulting to every single person in the Oncology field. The doctors, the nurses, the surgeons, the palliative care teams... the people who deal with oncology patients day in and day out. The ones who watch patients die after options have been exhausted and there is nothing more they can do.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Do you really think these people would stand back and let their patients die if there was a 20 cent cure that could be given that would cure them?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">How about the families and friends? The ones who watch their loved ones go from bright, happy, vivacious individuals to gaunt beings, barely recognizable, riddled with unmanageable pain and suffering. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Do you really think that these people would stand back and let their loved ones, their parents, sisters or brothers... their CHILDREN die if there was a 20 cent cure that could be given that would make everything better again?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">What about the cancer sufferers themselves?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The ones who have to endure the ordeal... the chemotherapy that makes them feel so violently nauseous and makes their hair fall out? The mouth ulcers, the infections, the pain, the constant injections. The radiation treatments, the surgeries, the ongoing barrage of medications to be taken around the clock.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The ones who end up with only one dream... the dream to survive... the ones who wake up every morning and celebrate just because they have woken up and have another day to be with those they love.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The ones who have the most to lose... their lives...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Do you really think that these people would be dying if there was a 20 cent cure that could be given that would give them back their life again?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Seriously, do you really think at all? Do you have any comprehension of how these theories might be taken by those who have been personally touched by this horrible disease? Any idea how insulting they are? How hurtful?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I dragged my family through hell and back... I fought for my daughter, I moved heaven and earth to keep her here... and I lost.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I lost her.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I lost a whole big chunk of my heart.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I wake every night because I can still hear her crying in pain. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I close my eyes and I can see her face etched with suffering.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I stop and I can feel her in my arms, tense with confusion and fear.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">There is not a day that goes by that I don't cry for her... that I don't wish to God that I had more than just a photo of her to hold onto.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">If a 20 cent cure could have changed that, don't you think I would have?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">So... seriously... just for once... think about what your saying...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Or better still...</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">STFU!</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com2tag:blogger.com,1999:blog-9186496698611708028.post-8447919212006495052013-01-06T17:40:00.002+10:002013-01-06T19:29:31.381+10:00Happy Heavenly Birthday Baby Bubble<span style="font-family: Georgia, 'Times New Roman', serif;">Heartache has become so much a part of my every day life. I guess everything we have been through, everything we have endured, has skewed my perspective... and everywhere I look I see sadness, hurt and heartache...</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">And today is no exception to that rule.</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">Today the world is a sad sad place.</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">It should be happy, we should be celebrating, we should be laughing and having fun.</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">We should be celebrating a first birthday party of my precious, beloved little nephew, but he was born sleeping at 35 weeks.</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">We are having something of a party, but instead laughter there is tears.</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">Instead of looking forward to many more to come, I find myself reflecting on the fact that life is so cruel.</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">Today I am adding a whole new level of sadness to the heartache I already feel every day. </span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">My heart hurts for my daughter, for missing her, for loving her... my heart hurts for the pain I see my family suffering, my other children who still cry for her at night, who miss her so much every minute of every day... for my husband who will stop and breathe and have a moment when he thinks of her or something reminds him of her...</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">And today my heart hurts for my sister and her partner and our families, everyone who was touched by his little heavenly being. </span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">We are having a little party this afternoon. It is not a joyous occasion, but I feel the need to do something to mark his anniversary. </span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">We have a little cake with blue frosting and silver sparkles, and we have some balloons that we will send to Heaven... and we will sing Happy Birthday. </span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">We also have a few little balloons that we will send to Nicola as well. </span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">My only hope is that today of all days, they have each other up there, they can find comfort in each others presence...</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">Because God knows, today there is little comfort down here without them.</span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
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<span style="font-family: Georgia, 'Times New Roman', serif;"><span style="font-size: large;"><br /></span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">♥♥♥♥♥♥♥♥♥♥♥♥♥♥</span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><br /></span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif;"><span style="font-size: large;">Happy Heavenly First Birthday</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;">Baby Bubble</span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">♥♥♥♥♥♥♥♥♥♥♥♥♥♥</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Today should have been so very different.</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Just know, we are thinking about you...</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Loving you...</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Missing you...</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i>Celebrating you this side of Heaven! </i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><i><br /></i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><i>♥♥♥♥♥♥♥♥♥♥♥♥♥♥</i></span></div>
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<span style="font-family: Georgia, Times New Roman, serif; font-size: large;"><i><br /></i></span></div>
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<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com0tag:blogger.com,1999:blog-9186496698611708028.post-118656301502632622012-12-31T22:33:00.001+10:002012-12-31T22:33:31.099+10:00A Few More Hours...<span style="font-family: Georgia, Times New Roman, serif;">Christmas has come and gone... It just didn't seem real, it didn't seem right. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Christmas eve was hard. Normally I would have you sitting up with me while I wrapped the presents from Santa. I would curse while trying to wrap awkwardly shaped gifts, and you would laugh your little laugh and try and wrap your self...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Yet this year, Christmas eve, there was a gaping silence that should have been filled by you, and it hurt.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">It hurt so, so, so very much, and it just wasn't right.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Christmas Day... well... we went through the motions. We got up, we opened presents, we laughed, we had breakfast, we had lunch, we watched the girls play with their toys, but all the while I was acutely aware that you were not here.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">That was probably exacerbated by the fact that a family member bought The Wiggles Christmas CD up and spent most of the day demanding that we listen to it. As lucky as he was that the fry pan was actually in use so I couldn't hit him upside the head with it (and I know how much that would have made you laugh!) it hurt to have constant reminders around about how much of a gap you have left in our lives.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Now it is New Years Eve...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">In less than two hours it will be 2013...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And to be honest, that thought just utterly terrifies me.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">It shouldn't, I know that... God knows, this year has been hell on Earth. There have been some highlights, like the amazing friends we have had come into our lives, and the incredible trip to Disneyland, seeing the snow and the excitement on your face as you tobogganed down the slopes with your Daddy and all the other things that we did together as a family... </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But this year we also said goodbye to Baby Krist before we got a chance to really meet him. We watched as you endured one horrible chemo session after another, as your pain intensified and your body weakened, as the horrible cancer took it's toll on your body... and we watched as you faded away before us. We said goodbye to you... </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And that was single handedly the worst thing I have ever endured in my life. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But, still, at least for most of 2012 I had you here. Even with the chemo and the pain and the suffering and everything else, I had you here. I could hold you, I could cuddle you, I could talk to you... but now you're gone.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And that is why the thought of facing 2013 is so painful.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The thought of a whole year without you in my life is just horrific. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The fact that it is the first of many just fills my heart with so much hurt. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">2013 is going to be bringing change... and I don't want to face that.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But regardless of whether I want to face it or not, it is coming... in just a matter of hours.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And, just like everything else that has happened in the last 12 months, I can't stop it. I can't change it. Whether I want to or not, I have to accept it...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">In a way, it feels like I am saying goodbye all over again... </span><br />
<span style="font-family: Georgia, 'Times New Roman', serif;"><br /></span>
<br />
<span style="font-family: Georgia, Times New Roman, serif;">And I don't like that...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Not one little bit.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com1tag:blogger.com,1999:blog-9186496698611708028.post-73217403866371295592012-12-02T22:49:00.001+10:002012-12-02T22:49:18.014+10:00I thought of you today...<span style="font-family: Georgia, Times New Roman, serif;">I thought of you today...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I know I think of you every day, but today it just seems that you've been especially on my mind.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Yesterday was hard. We went to the Camp Quality Mad Hatters Tea Party... and I knew it wouldn't be easy, but I didn't suspect it to slap me in the face quite as hard as it did.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">They have a puppet that looks just like you. The puppet sat next to me talking to the girls... and all I could think of was you.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">It was so hard not to cry and run away.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And today...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I don't know what it is... I think today is just a day that you've been on all our minds.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Isabella has been asking lots of questions about you. She keeps telling me that she knows that she has you inside her heart, but she wants you on the outside as well.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Every time she says it I feel another stab of pain in my heart, because I know that I want you on the outside too.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Everything now seems to remind me of you.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We set our Christmas tree up yesterday. We had contemplated getting another one, and then I realised that the tree we have now is the only tree you have ever seen.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We bought it the first Christmas we had you in our lives. It has been decorated every year with so much love. Even now, I look at it and it makes my heart hurt for you.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We still have the same tinsel that you loved running your fingers through. You laughed so much every time you touched it. It was so tickly on your little hands and fingers.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We got rid of a lot of the decorations that we used to have... but if I had known that we would no longer have you, I would have kept them. There were so many memories... but now, looking at my tree...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">There is a crown that was given to us to hang on our tree as a reminder of the princess that you were.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">A cupcake, to remind us of how much you loved your food, especially your cakes.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Birds, for your freedom and your love of music.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">A beautiful bauble that we bought back from Disneyland... to remind us of our happiest days on Earth...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">It is a tree that has seen better days... it is slowly falling apart, branch by branch... and it has seen more than it's $25 share of life... </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But it is a tree that is so full of love.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Everything in our lives seems to be filled with so much love... just not with you.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And we miss you.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">So very much it hurts.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<br />Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com1tag:blogger.com,1999:blog-9186496698611708028.post-26133683415646867412012-11-27T22:30:00.001+10:002012-11-27T22:30:54.426+10:00One Month Ago Today...<span style="font-family: Georgia, Times New Roman, serif;">Well... here we are... facing the first of what is going to be many... Today is the first month anniversary of your passing.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">One month ago today you gained your angel wings.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I still don't understand. I don't see why it had to be you. Why my daughter? Why my precious princess?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">There are nearly 4oo children a year that are diagnosed with cancer in Australia. Why couldn't it have been one of them?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I feel so angry... I feel angry because we fought so hard. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I fought when no one else had the faith in you.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I fought when no one else had the strength to do it.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I fought even though I was tired and I had had enough...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I fought through everything, we endured so much pain, so much heartache... and for what?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We were beaten at the end by something we just simply couldn't fight.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I feel angry that I had to say goodbye... </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">It seems like we have have a month of hurt. Every time we start to get up from one blow, another one comes down again. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Just 2 days after we lost you we had to start giving up your stuff.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Then we had your service... and then 3 days later you came home to us... </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Only instead of holding your soft warm body in my arms and playing with you, all I could do was to cradle a cold ceramic urn. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We created a special place for you, with all your favourite things... but it's just a shelf, in your bedroom. It's not the same as having you here with us.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We still have your airconditioner running. I know that sooner or later we are going to have to turn it off, but I just can't bring myself to yet. That is your room. Your room is always cold.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Slowly, it seems that every day since has delivered another little blow.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Just lots of little things, things that I know are innocent occasions and should be so simple... but they hurt so so so much.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Isabella had her prep orientation... and I walked into her new classroom and all I could think was that I would never get to do this with you. You never got your first day at school.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Jessica and Isabella had their dance recital, and as much as I loved sitting there watching them dance, there were some beautiful tiny dancers there, and it just made me think that we would never get to do that with you.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">There are constant reminders everywhere, every day, that you are no longer with us.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Even in little things, like jumping into the car and going shopping at lunch time. We haven't done that in so long because you always had your daytime naps. We could never keep you away from your naps, you needed them. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Last week I picked up our Christmas Laybuys and I had to take your toys out and return them. It hurt me so much. We had planned a HUGE Christmas which is why I've been paying for it since June... but I put so much time into chosing the most perfect toys for you... and then I had to return them. It just isn't fair.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Alyssa has developed a love of The Wiggles singing Twinkle Twinkle Little Star. She plays it over and over again. She sits in the car and starts singing... and I can't help but wonder if maybe she's looking for you to sing with you. You were the one that taught her that song, that was your song.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Even little things... I will grab a dress out of the cupboard to put on Alyssa, and then at any random time during the day I will look at her, and suddenly I will remember you wearing that dress... and it just hurts so very much.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">All I have left of you are memories... but it just doesn't feel like they can make me happy.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Each memory makes me cry... makes my heart hurt and makes me want to be able to have you back, to hold you, cuddle you, sing to you... to see you smile... and to see that look in your eyes, that look that told me that you loved me.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Your toy box is sitting here unused. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Tomorrow they are coming to take away your wheelchair and your bath seat... and I know that it is only a very short time before we have to hand over your beloved Giraffe chair...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">It feels like slowly every thing we have of yours is going away... and I don't like it.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">You have been so much a part of our lives... you have been so integral in everything we have done over the past 4 years... and now it's all gone.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I feel so lost... I feel so sad... I feel so alone... and I just feel heartbroken. I wake up each morning and I go through the motions. I laugh when I think I'm supposed to and I talk when I think I'm expected to respond. I cook, I clean, I do the school run. I avoid talking to most everyone because it's just too much... but I do what I need to to get through every day... </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But all around me, all I see is everyone is going about their lives, their worlds are still turning, they are still smiling and laughing...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">One month ago today my world stopped.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And I really don't know when it will start turning again.</span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com4tag:blogger.com,1999:blog-9186496698611708028.post-29320345701589058142012-11-22T20:30:00.001+10:002012-11-22T20:30:42.307+10:00Uncertain.<span style="font-family: Georgia, Times New Roman, serif;">This is probably the hardest blog entry I have ever written.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Normally, when I write, the words just flow. Once they start, I can't stop them. My thoughts, my feelings, my fears, everything just comes tumbling out to form some kind of a textual jumble on these pages. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Now, I fear that my words have become hesitant... simply because I doubt my own abilities... perhaps even my own desires?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Three weeks, five days and 8 hours ago, give or take, my whole world was fracture... not just fractured.. but shattered.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">My daughter, my precious, beloved daughter passed away from cancer. She was 4 years old. </span><br />
<br />
<span style="font-family: Georgia, Times New Roman, serif;">The day after her funeral, I found myself being accused of what can be surmised as 'pimping her out for publicity'. </span><br />
<br />
<span style="font-family: Georgia, Times New Roman, serif;">The primary charge was because her death was in the paper twice within a week. </span><br />
<br />
<span style="font-family: Georgia, Times New Roman, serif;">Apparently I was selling her out, cashing in on her suffering, and making parents of 'normal' children feel bad.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">I have to say here, I really don't truly understand... but regardless, I was so very, very deeply hurt by the accusations.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The fact that they came via a family member was perhaps even more hurtful...</span><br />
<br />
<span style="font-family: Georgia, Times New Roman, serif;">But ever since, now I find myself in the unusual position where even though I want to write, I am so filled with thoughts and emotions and fears and just general moments that I feel compelled to share... I now find myself second guessing everything.</span><br />
<br />
<span style="font-family: Georgia, Times New Roman, serif;">I find that now, fear of writing is slowly crowding out my desire to record everything, to write it down and store it for later?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">To be honest, right now, I really don't know.</span><br />
<br />
<span style="font-family: Georgia, Times New Roman, serif;">I love to write, and it has been my writing that has gotten me through this so far, but is it fair that I continue if that writing is upsetting others?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I don't know... I really don't know...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">In the midsts of everything else, the one thing I have always held fast to, my writing, is no longer comfort. Instead I am questioning whether or not I should.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Really, I guess, now, I just don't know which way to go any more.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I simply just don't know.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com5tag:blogger.com,1999:blog-9186496698611708028.post-75005368105846501252012-11-03T10:38:00.000+10:002012-11-03T10:38:06.092+10:00And Now You're Gone.<span style="font-family: Georgia, Times New Roman, serif;">It's been a week.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">How can a whole week pass without you here?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The world is still turning, people are still going about their lives and doing trivial and menial things... yet my world has been turned upside down and inside out and ripped apart... and I just don't understand.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">A week ago I gave you your morning medications. You looked up at me from bed, you smiled sleepily and you played your cheeky goosy girl game... I kissed you, I told you I loved you and I tucked you in again and let you go back to sleep.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">You were tired... my poor baby girl, you were so very very tired... </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And you did go back to sleep... and that was it... then our world ended.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I don't know, I feel so lost. Everything we have done for the past four years... every decision, every thought, every action, you have always been the central point for focus. Even when decisions have been made for someone else, you were our deciding factor.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And now you're gone.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And we are just lost.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Yesterday we held your memorial service. It was beautiful, it was really beautiful. There were over 100 people that came, and everyone that was there was there because they love you.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">There were reporters there from the Bulletin to write about the tribute for a lost little Princess.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We played a dvd from The Wiggles, a personal DVD that they made just for you. They love you too.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We showed photos of you, a photo tribute to your life and how much you had achieved... and in every photo you were smiling, you were bright and you were happy... and you were oh, so very, very cheeky!</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And then, when the service was all over, we went out and we released balloons. 100 purple, pink and white helium filled balloons, 12 Dora balloons and one Wiggles balloon that came just from The Wiggles.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
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<span style="font-family: Georgia, Times New Roman, serif;">Baby girl, it was so beautiful. Everyone cried, and everyone told me that they had never seen a service that was so full of love. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">There has been so much love for you, so much love from all around the world.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But that is exactly as it should be. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">My house has been filled with the most beautiful fresh flowers... orchids, lillies, roses, carnations... so many colours, so many beautiful smells... so many flowers that are fragile and precious and exceptionally gorgeous, just like you.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIiSMGrxq6cBziKLeyP94DjZE0GExCNV0r_FIGgRU4cnLw0T2yjMq40ywmhjpYdHooR_r4qok1A6qJ61AU8LPWWj0EbpNSk8dQfyTiaZ665UbVVh5OKHJbIbi9eUtjibiozFfhQEa4ZP4/s1600/flowers.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIiSMGrxq6cBziKLeyP94DjZE0GExCNV0r_FIGgRU4cnLw0T2yjMq40ywmhjpYdHooR_r4qok1A6qJ61AU8LPWWj0EbpNSk8dQfyTiaZ665UbVVh5OKHJbIbi9eUtjibiozFfhQEa4ZP4/s320/flowers.jpg" width="320" /></a></div>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">You may have only been 4 years old, but you were incredible. You have lived a life well beyond your little years and you have seen so many dreams come true. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">You have humbled people, shown them love and kindness, shown them the meaning of bravery and courage. You have taught people what life SHOULD be about. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">You have been an inspiration... you have been a light of hope... you have been an expression of love.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And now you're gone.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">You are going to be so very missed...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">You ARE so very missed.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com0tag:blogger.com,1999:blog-9186496698611708028.post-71256038597723875322012-10-30T17:53:00.000+10:002012-10-30T17:53:31.020+10:00Memorial Service<span style="font-family: Georgia, Times New Roman, serif;">Dearest Family & Friends,</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">A memorial service for Princess Nicola is going to be held on Friday, 02/11/12 at 2pm AEST at Woongarra Crematorium, Townsville.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We invite all Family and Friends to attend to help celebrate the memory of our special Princess.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Flowers are also welcome and can be sent to:</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Woongarra Crematorium</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">Bruce Highway</span><br />
<span style="font-family: Georgia, Times New Roman, serif;">Townsville, QLD, 4810</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We will be doing a commemorative balloon release of pink, purple and white balloons after the service. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We thank you for your love, your support and your prayers during this very difficult time.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com0tag:blogger.com,1999:blog-9186496698611708028.post-69144533227848015462012-10-27T15:14:00.000+10:002012-10-27T15:14:17.634+10:00Sleep Sweet Precious Angel<div style="text-align: center;">
<span style="font-family: Georgia, Times New Roman, serif;">It is with much sadness that we advise that Princess Nicola passed away this morning.</span></div>
<div style="text-align: center;">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: Georgia, Times New Roman, serif;">She passed peacefully in her sleep, surrounded by friends and family who love her.</span></div>
<div style="text-align: center;">
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span></div>
<div style="text-align: center;">
<span style="font-family: Georgia, Times New Roman, serif;">Fly free sweet Princess, may your angel wings guide you gently home.</span></div>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<div style="text-align: center;">
<span style="font-family: Georgia, Times New Roman, serif;">♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ ♥ </span></div>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
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<span style="font-family: Georgia, Times New Roman, serif;">Princess Nicola</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;">05-09-08 - 27-10-12</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com23tag:blogger.com,1999:blog-9186496698611708028.post-15705904484741069922012-10-18T21:32:00.000+10:002012-10-18T21:32:23.789+10:00FML<span style="font-family: Georgia, Times New Roman, serif;">There are so many things that really bug the hell out of me about social media, especially Facebook. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">There is a quote that I have seen around a few times... it says:</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">"Welcome to FACEBOOK. The place where people add you as a friend, but walk past you in the street. Where relationships are perfect and Liars believe they are telling the truth. Your enemies visit your profile the most, yet friends and family block you... and even though you write what you are really thinking, someone always takes it the wrong way or assumes your post is about them."</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">There is so much that annoys me... I don't like the text speak, I get bugged by the annoying profiles that parents make for their very young children, or even worse, their dogs! and I despise the way people comment on your every status, even though really you know that they couldn't care less, but they're trying to make themselves feel better about their own lives...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I get annoyed by the people who update every single little thing... "Oh, I got a drink of water, how awesome am I?"</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Or the people who update nothing except drama, drama, drama!</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But mostly, more than anything else, I completely, totally and utterly LOATHE the term FML.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">For the uninitiated among us, FML stands for F*** My Life.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">"My shirt won't button up over my boobs.... FML!"</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">"My kid spilled foundation on my carpet... FML!"</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">"I can't find a pair of brown boots in size 10... FML!"</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">"I can't afford tickets to P!NK! FML!"</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I mean... come on... seriously?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">If the worst thing that you can complain about is that you have big boobs, or you can't afford tickets to go to a stupid concert, then really, you need to step back, stop and think, and take a very, very long hard look at your life...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Then step out of your bubble, and look at the world around you.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Tonight, this is what is happening in the world around me.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">In Kentucky, a family is mourning the loss of a beloved son who passed away from cancer at the age of 13.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">In New England, a woman is watching her husband in Intensive Care after he was shot in the head because he happened to be in the wrong convenience store at the wrong time.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, 'Times New Roman', serif;">In Texas a mother is praying that something, ANYTHING, can be done to help her baby.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">In London a mother is watching her beloved child suffer in excruciating pain while she is waitlisted for extreme surgery that most people could never even begin to fathom.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">In the capital city a family has been told that there is nothing more that can be done for their precious daughter.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">A few hours away, a woman is faced with losing her mother.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">In a neighbouring town, a mother is sitting by her child's bedside as her child struggles to breathe...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And here?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Here, I sit... I am listening as my husband holds my screaming daughter who is in pain that you couldn't even begin to comprehend. Tonight, I am crying with my child, because as she cries, I know there is nothing more I can do except hold her and tell her it's ok. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Tonight, my daughter is one day closer to gaining her angel wings.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">My six year old daughter is blaming herself. She wakes up five or six times a night screaming from horrific nightmares that plague her because she thinks that she is somehow responsible for the fact that her baby sister is dying.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">My five year old daughter is struggling to comprehend what has become our reality. She doesn't understand, she can't even begin to deal with it, so she just cries... all the time.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">My 20 month old daughter is just dealing with everyone else's stress and looking for the things that make her happy... her Grandad and her Dora.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">All around me, my family is slowly but surely falling apart, and there is not a damned thing that I can do to help any of them. I can be there, I can hold them, I can reassure them that somehow, when this is through, we will be ok... </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But I can't change it.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">My four year old daughter is dying from cancer, and there is nothing at all that I can do to change it.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">So... now... having read what's happening in my world... all I want to know is...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Still think your life is that bad because you can't get tickets to P!NK?</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com10tag:blogger.com,1999:blog-9186496698611708028.post-15030026710584857182012-10-13T16:09:00.002+10:002012-10-13T16:09:31.835+10:00Last Night I Had The Strangest Dream...<span style="font-family: Georgia, Times New Roman, serif;">Well, it wasn't last night, but it was a couple of nights ago... and the dream wasn't really so strange... more... well... I guess it was sad.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I had a dream that we were going on a holiday. I don't know why, but this holiday was important, it was so important I had spend years organising it... I spoke to the hotel repeatedly, I made all the plans, I made sure we had a ground floor room that was easily accessible for Nicola's wheelchair, I made sure we had easy access to disability parking for ease and safety of getting her in and out of the car, I made sure the rooms were completely climate control so that she would be cool enough, and I made sure that we were away from any source of noise and we had good blockout curtains so it would be dark and quiet for her, just the way she likes it. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I spent so long making the arrangements and I checked and double checked and triple checked and then checked some more to make sure everything was perfect.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Then we set off on our amazing holiday...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And when we got there, the hotel was under construction and it was all just a mess. The parking lot was fenced off and all the car parks had been excavated. The temporary car park was 5km up the road and it was blisteringly hot outside. </span><br />
<br />
<span style="font-family: Georgia, Times New Roman, serif;">The only building that had ground floor rooms had been partially levelled and mostly gutted so there was only a bit of a shell left... definitely not anything that was even remotely suitable for human habitation...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I went to the manager and I was angry. I made plans, I made sure every plan was perfect, I checked, I double checked, I triple checked and I checked some more to make sure that all her needs were going to be met...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And now we were here, in what looked like somewhere little better than a warzone. Around us we could hear both deconstruction and reconstruction. It was swelteringly hot, it was humid, it was loud, it was dusty, it was dirty... and the only room they could give us had no airconditioning and was on the fourth floor with no elevators.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I argued, I yelled, I swore, I cried... I argued some more, but there was simply no other options.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">It was at that point I stopped and I looked at my daughter and she looked so weak and just so bone shatteringly exhausted, I knew I couldn't fight any more. All I could do was to find somewhere that I could lay her down, hold her hand and watch her while she sleeps.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">When I woke up, I felt so sad, but I also knew what it meant.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The time is coming that I need to stop fighting for my daughter. There is no fight left that I can win. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Looking at her now, my beautiful chubby cheeked daughter is gone. Her chubby cheeks have disappeared, she is skinny and pale and shadowy. She doesn't smile, she doesn't laugh, her sparkle is just not there any more. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Most of her time is spent sitting on my lap cuddling, not watching tv, not talking, not playing... just cuddling. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">She doesn't even want to watch Wiggles or Dora.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Her pain levels have escalated so rapidly that even the palliative care pain team have admitted that we are starting to run out of options on oral pain relief drugs and we may be looking at moving to an IV infusion soon in order to keep her comfortable.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Last week we found out that she has developed a staph infection in her port. She developed raging fevers and a really high heart rate. She has been started on IV antibiotics which I have learned to administer here at home, but they think this infection is what is pushing her poor little body over the edge. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">She is declining rapidly, even her doctor is surprised at the change in her. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Her body is simply struggling and is starting to shut down.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">My bright, happy, cheerful baby is slowly slipping away from me.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And I hate that I just can't fight this.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com6tag:blogger.com,1999:blog-9186496698611708028.post-9141392779269291052012-09-25T19:06:00.003+10:002012-09-25T19:06:35.935+10:00Numb<span style="font-family: Georgia, Times New Roman, serif;">I have spent hours staring at a blank white blog page, trying to find the words, to put words together, to try and do something to explain...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But words fail me.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I think the problem is that when I write, I write my feelings, I write my emotions...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And right now, I am just emotionally numb.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">8am this morning we got the phone call we had been waiting on... a call from Nicola's oncologist in Brisbane... with the results of Nicola's MRI from yesterday.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We knew yesterday that it wasn't going to be good news.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Today it was confirmed.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The cancer has spread, aggressively. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">It is impacting most of her major organs, but predominantly it is impacting on her kidneys and her bladder. Both her kidneys and her bladder are swollen and not emptying properly. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Her blood tests show that her kidney function is impaired.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">There is nothing that can be done. Surgery is not an option, no surgeon will do anything invasive because it will only cause her pain and will not buy her any more time.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Further chemo is not an option because she has severe renal impairment. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We are officially out of options...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">And with how rapidly she has shown progression of disease we are now fast running out of time.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">If we are lucky, if we are REALLY lucky, we may have a few weeks.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">If her health deteriorates, we may have a matter of days.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Days...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">That is what my daughter's life has been reduced to.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">This time last week we were in California. We were high on happiness at Disneyland. We were celebrating and enjoying the time of our lives...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Today...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Today I don't know what to think or feel. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I feel hurt and angry... I feel confused... I feel alone in a room full of people.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I want to pause time, I want to pick her up and hold her in my arms and make time stand still so I can stay in that moment for ever...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But I can't.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Instead every hour seems to be zooming past at an alarming rate and I just don't know what to do next.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I feel overwhelmed... and lost.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I feel numb.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com15tag:blogger.com,1999:blog-9186496698611708028.post-60995255007025249892012-09-23T21:18:00.001+10:002012-09-23T21:18:49.381+10:00A Very Magical Gift<span style="font-family: Georgia, Times New Roman, serif;">A couple of weeks ago we were given the most magical gift. Really, it all started more than a couple of weeks ago... but, two weeks ago it happened.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We took Princess Nicola and her three sisters and we boarded a plane and we went to Disneyland.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">To say that the experience was incredible is the understatement of the century, but what made it even more spectacular was that it was a gift, an incredibly humbling and touching gift from my daughter's school and our school community to our family.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">A gift that gave us an experience that we can never, ever, in a million years hope to replicate.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I know there are going to be some people who will shrug that statement off. I know, yeah, it's just Disneyland. We can always go back... No matter what happens in the future, Disneyland will still be there...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But I know it will never be like that again.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">I mean, to start with...</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP-9hA6VdMJCRoZ72YETGYBg0j98iKHokf6p2GjhZaBH_4x7XAGRLI5TmXmqXnu9lBkL-_xHPmqptpPRtEOWVMKtH8XyZoVXY3KfqI0SGHOVtqxfX399BBFihZxLaCon2xBmcepIEFtTw/s1600/109.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgP-9hA6VdMJCRoZ72YETGYBg0j98iKHokf6p2GjhZaBH_4x7XAGRLI5TmXmqXnu9lBkL-_xHPmqptpPRtEOWVMKtH8XyZoVXY3KfqI0SGHOVtqxfX399BBFihZxLaCon2xBmcepIEFtTw/s320/109.JPG" width="320" /></a></div>
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">That is just one of many photos that shows the importance of the trip. There are four children in that photo. Count them... four... one... two... three... four.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">That is something that I know in my heart I will not be able to achieve again.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">The inclusion that we found for Nicola was just absolutely phenomenal.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Disneyland is often referred to as the happiest place on earth, and to be honest, I can understand why.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Everywhere we went within the park the staff went out of their way to ensure that we had a positive experience. </span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">Everyone showered Princess Nicola with love, treasures and trinkets. Every experience was astounding... and many times both Michael and I found ourselves stopping and taking deep breaths.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">We had to stop, we had to breath because most everything that happened took our breath away, humbled us and made us incredibly grateful for this amazing gift, but also reminded us of why this trip was so very important... and how incredibly fragile the happiness we found was.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
<span style="font-family: Georgia, Times New Roman, serif;">But, for the most part we managed to put our emotions aside long enough to revel in the joy of our children as we watched them on the experience of a life time.</span><br />
<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>
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<span style="font-family: Georgia, Times New Roman, serif;">We ended up trading up our 4 day passes to include an extra 5th day, just so we would have more time to revel in the magic that is the happiest place on earth.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">Now, we are home... we got home late Thursday and the last few days have been manic busy, but still, each day has been peppered with reminders of the most incredibly, amazingly, magically happy holiday that we could ever have possibly hoped to have taken... and the fact that it was such a special gift made every moment all the more precious and all the more magical.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">To everyone who helped to make this happen, thank you. From the bottoms of our hearts, thank you. You have given us something that cannot be quantified. You have gifted us with memories, you have made a dream come true, and you have blessed our family more than you could ever even begin to comprehend.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;">No matter what happens in the future, no matter what tomorrow will bring, we will always have Disneyland.</span><br />
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<span style="font-family: Georgia, Times New Roman, serif;"><br /></span>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com5tag:blogger.com,1999:blog-9186496698611708028.post-49619405863519749102012-09-07T19:36:00.005+10:002012-09-07T23:15:44.010+10:00A Belated Birthday<span style="font-family:Georgia, serif;"><span style="font-size:100%;">To my most beautiful Princess Nicola,</span></span><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">It has taken me two days to write this post, two days to work my way through the complex emotions surrounding everything at the moment, especially the emotions surrounding your birthday, which was two days ago.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Two days ago, you woke up, and I held you in my arms. I snuggled into you, grateful for your warmth, your presence, your comfort... I was even grateful for the way you fought against me holding you so closely... because that fight meant that I still had you, here, in my arms, where you belong. </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">It is so very very hard to believe that we have now been on this roller coaster for four years. For four long years we have fought long and hard to keep you here with us. Even before your birth... we didn't know there was anything wrong, we didn't know there was anything different, we just knew that you were going to be unique. </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div><span style="font-family:Georgia, serif;"><span style="font-size:100%;">When the </span>Obstetrician<span style="font-size:100%;"> told us at 34 weeks that you would be induced the next day, I knew we were in for an interesting ride, but I had no idea how interesting it would be.</span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size:100%;"><br /></span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size:100%;">You have, in your four short years, taught me the highest of highs and the lowest of lows. I have seen you through so much... I have sat by your bedside holding your hand, listening to the incessant alarm of the ventilator... I have stared down ICU doctors who told me you wouldn't survive the night, and I knew you would prove them wrong.</span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size:100%;"><br /></span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size:100%;">I have had faith in you, faith that your strength, your determination, your willpower, and my love could see us through absolutely anything.</span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size:100%;"><br /></span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size:100%;">Now, in the face of your fourth birthday, I find that strength and determination wavering, and as much as my love is still standing firm, I know that our time is limited... which is why this birthday has been so particularly hard.</span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size:100%;"><br /></span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size:100%;">There are so many birthdays that you still have to come, so many birthdays that I want to share with you. I want to be there when you reach double figures (10). I want to be there when you become a teenager (13). I want to be holding your hand as you reach sweet sixteen and then pass into adulthood at 18.</span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size:100%;"><br /></span></span></div><div><span style="font-family:Georgia, serif;">Looking back, I can't believe how much you have changed me. You have taught me patience that I would never have known, you taught me tolerance and acceptance. You have taught me to believe in myself and to trust my instincts. You have taught me how to fight, you have taught </span><span style=" ;font-family:Georgia, serif;">me unconditional love, a love that surpasses that of a mother for her child and transcends into something that is completely primal. </span></div><div><span style=" ;font-family:Georgia, serif;"><br /></span></div><div><span style=" ;font-family:Georgia, serif;">You are so very, very precious, and there is not a day that passes that I am not incredibly grateful to have been chosen to be your mother, to have been part of your life, to have been blessed with the specialness that is you... but mostly just to have been on this journey.</span></div><div><span style=" ;font-family:Georgia, serif;"><br /></span></div><div><span style=" ;font-family:Georgia, serif;">This is a journey that has made me cry, brought me so much pain and given me so much hurt... yet looking back, I would not change a single thing.</span></div><div><span style=" ;font-family:Georgia, serif;"><br /></span></div><div><span style=" ;font-family:Georgia, serif;">I am grateful every moment for the perfect blessing that you are.</span></div><div><br /></div><div><br /></div><div><span style="font-family:Georgia, serif;">So, my sweet, perfect Princess...</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">Now, in celebration of your fourth birthday, I want to tell you this.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">I love you. You are my heart, my soul and my light. You bring me joy, you bring me happiness, and you bring me tears. You have changed my life so spectacularly, yet I am continually blessed by you.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">I will cherish every moment we have left together. I will love you all the more fiercely because I know our time is limited. I will make you laugh, I will shower you with love, and I will do everything in my power to keep you happy, to see you laugh, to see you smile, to see you enjoying life.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">But mostly, I really just promise that I will love you. You are my baby. You are my precious one, you are my little Princess, and I will love you all the more for it. </span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">I hope you enjoyed our shopping trip... I hope you love your new Dora pretties... I hope you loved our lunch together... I hope you loved your crown and your earrings and your cake...</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">And I promise you this... I promise that there is a lot more love, and happiness to come! </span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;"><3</span></div>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com4tag:blogger.com,1999:blog-9186496698611708028.post-88366247564698226482012-08-26T17:52:00.002+10:002012-08-26T19:29:50.474+10:00No More Green Slips.<span style="font-family:Georgia, serif;"><span style="font-size: 100%;">For the last 10 months, trips to Brisbane for chemo have been relatively straight </span>forward<span style="font-size: 100%;">. We go, we see the Oncologist, we get a green slip, we leave.</span></span><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Well...</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">We went.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">We saw the Oncologist.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">We left.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">No green slip.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">What does that mean?</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">The green slip is the 'we need to see you again so we will book an appointment in X weeks'. </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Nicola has finished her chemo...</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">There is no appointment to see her again.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">And to be honest, the next person that says to me "Oh, you must be so happy to be at this point!" is going to get smacked in the face with the full wrath of a Mumma who hurts like you couldn't believe!</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I posted on a facebook group last week that Nicola was facing her last chemo session and I wasn't quite sure how to feel about it... and so many people told me how relieved I must feel, and how I must be so glad to be getting back to normal...</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">And all it did was make me feel worse than you could possibly believe.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">There is no 'back to normal' for us. There is no sense of relief... there is no happiness, there is no celebration or jubiulation. There is nothing, except an overwhelming feeling of hurt. </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">We have come so far...</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">We have so far still to go.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">We know this was her last chemo session...</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">We also know that she is not cured. She is not NED (No Evidence of Disease) and she is not in remission. We know that she WILL relapse. We know that when she does, there is very little we can do...</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">And all of this was confirmed last week when we saw her oncologist for her last chemo appointment.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">"You knew from the beginning that the very best we could do was to buy time. From here on out, that time is going to come at a cost."</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Those were the words of her Oncologist.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Words that, from here on out, have been forever slammed into my heart.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">It's not that this is anything we didn't already know... just, more that we had it confirmed. There was no ambiguity, no uncertainty, no hesitation... just simple facts.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">The chemo has not worked as expected.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">The radiation has not worked as expected.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">She still has a very large tumor in her pelvis.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">She still has stage 4 metastasis in her lungs.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Her pain levels are not going to get better.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Her pain levels will probably get worse.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">There is a suspicion she is already starting to show progression of disease.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Second line treatment MAY buy us time, but at a heavy price.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Quality of life will decrease as pain increases and second line treatment will make that worse.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">From our perspective, it is simple.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">From here on out, we focus on quality of life. We focus on her happiness. We do what we can to ensure that she is happy and comfortable. </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">We focus on making our memories and making the most of every moment we have left.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">The simple fact is... from now on... </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Every moment is precious.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com8tag:blogger.com,1999:blog-9186496698611708028.post-39336748554333798552012-08-20T19:35:00.003+10:002012-08-20T19:51:25.117+10:00Another Three...<br />Wow... we have so much happening here at the moment. Things are just so insanely busy!<div><br /></div><div>Today is Monday... I have one big girl sick... one big girl dealing with a busted lip and the remnants of a concussion... one baby girl teething...</div><div><br /></div><div>And one precious princess gearing up for her last chemo session.</div><div><br /></div><div>We fly down Thursday morning and we get to sit down and have some rather frank discussions with her doctors about where we go from here and time frames etc.</div><div><br /></div><div>We fly home Friday, get off the plane and swing straight back into reality with one gymnastics lesson and one impromptu dancing lesson. </div><div><br /></div><div>Saturday morning we have a birthday party for a cousin, a Highland dancing competition, and my Dad's 60th birthday party. Sunday we have a date planned to drive down to some special markets in Home Hill with a friend... and then next week is equally insane...</div><div><br /></div><div>But... more importantly... we have some incredible planning to finish...</div><div><br /></div><div>See....</div><div><br /></div><div>There is another three in our lives.</div><div><br /></div><div>Three weeks.</div><div><br /></div><div>What happens in three weeks???</div><div><br /></div><div>Well...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div><div>...</div><div><br /></div><div><br /></div><div>...</div><div>...</div>...<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFNM7Vk7UvJNjkllODyE4sY63oy9oVHE2ROpP0_oJ_mvmSr9B0CTPGdfDc1r5XrJy7P8awsBFwq0-HJr6hNe4w6zdsfDit69ECoJcx6D88cqgY42MUQ4_CV9bvxkImCrxFrnpBe0kP8ss/s1600/Disneyland-Logo.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 220px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFNM7Vk7UvJNjkllODyE4sY63oy9oVHE2ROpP0_oJ_mvmSr9B0CTPGdfDc1r5XrJy7P8awsBFwq0-HJr6hNe4w6zdsfDit69ECoJcx6D88cqgY42MUQ4_CV9bvxkImCrxFrnpBe0kP8ss/s320/Disneyland-Logo.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5778688205601428418" /></a><br /><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div>The most precious little Princess is headed to the Happiest Place on Earth!</div><div><br /></div><div>Our flights are booked and our hotel is arranged. Our Park passes have been purchased and are sitting securely in a safe place!</div><div><br /></div><div>It feels so surreal... it is something that meant so much to us, but that we never thought we would be able to achieve... it became our ray of hope, our beacon, our light at the end of the tunnel... a tunnel that seemed impossibly long.</div><div><br /></div><div>There were many many days that we never thought we would get there... and if it wasn't for some very incredibly special people we wouldn't have!</div><div><br /></div><div>But... three weeks from today we will be winging our way across to 'the other side of the world'!</div><div><br /></div><div>I feel so completely overwhelmed at the thought of it all, yet so very, very excited that we are going to get this experience, that we get to share it together with all of our children, while we have all of our children.</div><div><br /></div><div>The next three weeks are going to pass in a flash and there is still so much to organise. Packing, medical paperwork, all the other bits and pieces that we need to finalise...</div><div><br /></div><div>But it is happening, it is really, really happening...</div><div><br /></div><div>Another dream is coming true!!!!</div>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com1tag:blogger.com,1999:blog-9186496698611708028.post-38360049235471539762012-07-31T17:04:00.004+10:002012-07-31T20:14:10.667+10:00Send in the Clowns!I am pretty sure that everyone, at least all of my Australian friends, will have a childhood memory involving going to the Show (Carnival/Fair) and playing 'The Clowns' in side show alley.<div><br /></div><div>You all know the ones I mean?</div><div><br /></div><div>With the creepy, goofy looking faces grinning at you wickedly, challenging you... The ones that look just like this.</div><div><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPG9xmpUZF1lxsgIM2jUD_TbathNdh-_Ou_QJW6Y4CFoyP0T0YXOvseCXqGUKDXICI87FzrufsJWknj-eK73wdXtUGfr-qQoQ9x4VXytgJtDt2BEsvE93joH68zN6doB8B9vaMpXc4MSY/s1600/clowns.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 320px; height: 214px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPG9xmpUZF1lxsgIM2jUD_TbathNdh-_Ou_QJW6Y4CFoyP0T0YXOvseCXqGUKDXICI87FzrufsJWknj-eK73wdXtUGfr-qQoQ9x4VXytgJtDt2BEsvE93joH68zN6doB8B9vaMpXc4MSY/s320/clowns.jpg" border="0" alt="" id="BLOGGER_PHOTO_ID_5771239918250366450" /></a><br /><br /></div><div>Everyone knows which clowns I mean, everyone has seen them, everyone has played on them... they are part of our childhood and it doesn't matter how old you are, you played the clowns at least once when you were a kid.</div><div><br /></div><div>Today, Nicola played the clowns for the first time. </div><div><br /></div><div>Today we gave the girls a day off school and we all played hooky and we went out to Charters Towers because the Charters Towers show was on. It was much smaller than our local show (which we had decided not to go to), had about a tenth of the rides... but the important stuff was there. There was a Ferris Wheel, a couple of fast rides, baked potatoes... and The Clowns.</div><div><br /></div><div>It was as we were getting ready to leave that I finally decided to let the girls play the clowns. You know, it wasn't all that long ago, at least, in my mind it wasn't all that long ago, that you got 3 turns for $5... now, at $5 a turn, it is hard to really say yes, especially when you know that they're going to walk away with some cheap plastic piece of junk that will end up in the trash within 15 minutes... but, it's still something that we do... and today, as a random spur of the moment decision, I decided to let Nicola have a go as well.</div><div><br /></div><div>There wasn't a lot else she could really participate in at the show, she was too little for all the rides, or they weren't suitable for her disabilities... but I thought maybe this was something we could have fun with.</div><div><br /></div><div>Well, she chose a Pink Panther and that was it. She was absolutely adamant that we had to 'doh dere'. So we did. </div><div><br /></div><div>I handed her her first ball and I pointed to the mouth of the Pink Panther and I said "here Nicola, in here!"</div><div><br /></div><div>Her whole little hand, wrapped around that ball, managed to fit inside the Pink Panther's mouth. She shoved her hand half way down it's throat before she let go. </div><div><br /></div><div>Almost instantly her face broke out into the biggest grin and she threw her head back and started laughing. She clapped her hands and said "Dood! Dood dirl!"</div><div><br /></div><div>"Yes, Darling, you are a good girl. You did so good! You're so smart!"</div><div><br /></div><div>And we started again. We would hand her a ball, she would put her whole hand down into the Panther's throat and then she would let it drop. Pulling her hand back out, she would start clapping and telling us what a good girl she was.</div><div><br /></div><div>And she was... she was a good girl. She was an incredible girl. She did so very, very well, and I am so very, very proud of her... but mostly, I am just so very happy that she got to experience this, she got to share it with her sisters, whom all cheered her on and clapped with her. </div><div><br /></div><div>And after all of that, even though she only got a total of 14 points (the minimum to win the cheap plastic toy was 22) she walked away with a beautiful big pink and purple plush unicorn.</div><div><br /></div><div>Apparently the person who was running the game was so suitably touched by Nicola's excitement and her participation, she wanted to give her something that was really good that she would be able to love.</div><div><br /></div><div>All in all, everyone had a wonderful day, including Nicola. Lots of memories were made, including Nicola... and now, with four children in bed, I am sitting here reflecting on the day... and I am so, so, so very glad that we did it. </div><div><br /></div><div>We just simply had fun...</div><div><br /></div><div>All of us...</div><div><br /></div><div>Together.</div><div><br /></div><div><br /></div>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com1tag:blogger.com,1999:blog-9186496698611708028.post-53066026082064868752012-07-26T18:39:00.003+10:002012-07-26T19:37:21.643+10:00ThreeThree...<div><br /></div><div>It seems insignificant doesn't it?</div><div><br /></div><div>It's just a number... and an itty bitty number at that. </div><div><br /></div><div>It's not something grand like Ten Thousand Seven Hundred and Fifty Two.</div><div><br /></div><div>It's not evil like Six, Six, Six...</div><div><br /></div><div>It's not naughty like Sixty Nine...</div><div><br /></div><div>It's just a little number sitting there, all sweet and uneven.</div><div><br /></div><div>To me it is a count down.</div><div><br /></div><div>As of today, there are only three more chemo sessions remaining.</div><div><br /></div><div>After next week there will only be two...</div><div><br /></div><div>And after that there will only be one...</div><div><br /></div><div>And what happens then?</div><div><br /></div><div>For the last 10 months our lives have been dictated by her treatments, her blood counts, her appointments... </div><div><br /></div><div>We have spent one third of our time wrapped in a bubble, shielding Nicola from the outside world out of fear she would get sick while her blood counts were too low.</div><div><br /></div><div>We have watched her grow sicker, watched her lose weight, watched her grow gaunt and shadowy, and watched the smile slowly fade from her eyes.</div><div><br /></div><div>We have lived a roller coaster of emotions roaring from the greatest of highs to the lowest lows as we have watched her, cared for her, tried to protect her and loved her fiercely.</div><div><br /></div><div>Now we face a day just around the corner where this will all change. There will be no more trips to the hospital three times a week, no more weekly chemo treatments, no more purple rubber gloves, no more flying to Brisbane every three weeks... </div><div><br /></div><div>She will no longer be cytotoxic, she will no longer be such an infection risk, and she will no longer be quite so isolated from her sisters.</div><div><br /></div><div>Hopefully she will gain a bit of weight, the constant nausea will subside, and her hair will continue to regrow. It is already starting to regrow, she has this gorgeous little layer of peach fuzz all over her head. Tonight we even washed her hair with shampoo and conditioner! We've done it all along, even when she was as bald as... but tonight it just seemed even more poignant. </div><div><br /></div><div>God willing, her beautiful smile will make it all the way back to her eyes.</div><div><br /></div><div>There are some things that won't change. </div><div><br /></div><div>She will still be on massive amounts of pain relief that seem to get larger with every blink. She will still be tired a lot more than she was previously, and she will still have a massive tumor growing inside her abdomen.</div><div><br /></div><div>She still won't be able to sit unaided, to stand under her own strength, or to take those precious tentative first steps... only now we no longer cling to the hope that one day she will. The tumor on the Psoas muscle makes any movement of her legs far too painful.</div><div><br /></div><div>Instead of being able to relax with the end of treatment, instead we begin a very very anxious wait for what her doctors are almost certain is inevitable, the regrowth of the tumor. Every day that passes will carry with it the sickening feeling of dread that the monster inside her is going to rear it's ugly head again, and where do we take our battle then?</div><div><br /></div><div>Once again we enter the land of the unknown, trekking away slowly along a path we don't know without a map to guide us.</div><div><br /></div><div>I feel anxious at the thought of it, at times I feel positively sick with fear at what will be coming... I wish I could get a remote control for life so I could just pause on that perfect moment where she is happy, everyone is happy, and stay in that moment forever.</div><div><br /></div><div>Of course, this journey has had some blessings. I have learned a lot of things. I have learned a level of patience that I didn't know was possible for me. I am not generally a person who is happy to sit and wait... yet that is what I have done for the last 10 months. I have learned that even when I feel like I have nothing left to give, I can still pick myself up, put on a brave face and just keep on moving forward. I have learned courage I didn't know I had, because it takes a whole lot of courage to walk into a room after a scan when you have been praying for the best but fear the worst. </div><div><br /></div><div>I have also learned that there are people that care. There is a whole lot of love in this community and in this world, and there are a whole lot of people who are truly genuinely willing to share that love without expecting anything in return.</div><div><br /></div><div>We recently got an update from the 'Reaching Out In Love' Appeal and they have done so much, they have put in such a phenomenally amazing effort! We are so, so, so, so, so VERY close to being able to take Nicola to Disneyland! It is amazing! Time is starting to run out, but we are confident that w<span style="font-size: 100%; ">ith a little luck and a whole lot of love we will be over the line in time to make such a momentous trip while she can still travel.</span></div><div><span style="font-size: 100%; "><br /></span></div><div><span style="font-size: 100%; ">But until then, we are back to just sweet little three. </span><span style="font-size: 100%; ">In just three more treatments our status quo changes. Soon it will be two... and then it will be one... and then, well... </span></div><div><span style="font-size: 100%; "><br /></span></div><div><span style="font-size: 100%; ">Only God knows.</span></div><div><span style="font-size: 100%; "><br /></span></div><div><span style="font-size: 100%; "><br /></span></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com0tag:blogger.com,1999:blog-9186496698611708028.post-90061177171523526192012-07-21T16:09:00.002+10:002012-07-21T22:02:52.723+10:00T'was a Thursday When The War Began...<span style="font-family:Georgia, serif;"><span style="font-size: 100%;">I have this recurring dream/nightmare.</span></span><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I dream that I am with my family. The location changes, sometimes we are at home, sometimes we are at the beach, sometimes we are with friends, sometimes we are in random places... </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">But no matter where we are, a war breaks out.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div><span style="font-family:Georgia, serif;"><span style="font-size: 100%;">I mean full blown war. Invading s</span>oldiers<span style="font-size: 100%;"> with big guns, bombs dropping, people screaming. </span>Devastation<span style="font-size: 100%;"> and heartache on a massive scale and I have no choice but to fight.</span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size: 100%;"><br /></span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size: 100%;">I realise what has happened, and my only purpose becomes to protect my children, to keep them safe, no matter what, which, believe me, is much easier said than done...</span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size: 100%;"><br /></span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size: 100%;">In my dreams I am not a true threat to the enemy... I am just a Mother trying to do what I can to protect my babies, they are soldiers trained to kill. They are fighting with weapons that I cannot use and I do not understand, they are trained and armed and equipped... and I am just a mother trying to protect those I love the most. I am outnumbered, out maneuvered, and out skilled. </span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size: 100%;"><br /></span></span></div><div><span style="font-family:Georgia, serif;"><span style="font-size: 100%;">They are dropping bombs and shooting at us and using gases and munition that I don't have... and I cannot fight back. I try to hide, but they find us. I try to run but they stop us. </span></span><span style="font-family: Georgia, serif; font-size: 16px; ">I cannot protect my children, I cannot protect my babies... </span></div><div><span style="font-family:Georgia, serif;"><span style="font-size: 100%;"><br /></span></span></div><div><span style="font-family:Georgia, serif;">Those I love are harmed and I wake up.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">At some point in the last week or so I have come to the conclusion that this is somewhat symbolic of my life.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">My life is a war and I spend it trying to protect those I love the most. I try to protect my family, my children, my parents, my siblings... I try to shield them from this war...</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">Only this is no dream. I cannot just wake up and have the enemy fade away into a memory. </span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">Just like in my dreams, I cannot see what I am fighting, I do not understand it and I don't know how to arm myself against it... </span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">And just like in my dreams, those I love the most are the ones that are being hurt.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">We are fighting so hard to give our other children the most normal life that we possibly can... and most of the time I think we are doing ok... but every now and then I see a little glimpse of the hurt that I think they try and hide from us, and it just breaks my heart.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">We try hard to make sure that the girls get to do a lot of the things that their peers do. Both girls do dancing. Jessica does Highland and Ballet. Isabella does Ballet lessons and she's just started Gymnastics, which is something she has wanted to do all year. </span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">We make sure that we don't miss sports days or dance recitals and we try to do normal things like play dates and birthday parties.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">Most of the time we manage to keep things under control, and most of the time I think they are relatively happy and stable girls... but every now and then something happens, something slips in my carefully structured world and it all goes to pooki!</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">There wasn't a lot that we had planned for this weekend, but one of the important things that we had been looking forward to all week was attending the birthday party of the daughter of a very special friend today... something that both my big girls had been really excited about all week.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">Yesterday, she had her routine bloods done, and they were all completely tanked. Her neutrophils are the lowest they have ever been, her haemoglobin is low again and she is bordering on needing a transfusion. Her pain tolerance levels have tanked, her 'happy drugs' don't seem to be working, and all in all she is just having a really really bad time of it. She hasn't coped with this last round of chemo at all.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">Now, normally this wouldn't be such a big deal. Any other time one of us would bundle the girls into the car and head off to the party while the other stayed here... but today... I don't know.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">Perhaps it's the fact that I was up most of the night with her crying and unsettled and I am running on almost empty today, so not totally confident with a long and lonely drive on the highway.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">Perhaps it's the fact that the look on her face, her skin so pale, her eyes so dark and sad... it all just cried to me that I needed to stay here, with her, where she could see me and I could make sure she was ok...</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">I don't know what it was, but today I just couldn't do it. I couldn't pack them up and take them to a party an hour and a half out of town, not when she was so unwell and so unhappy.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">Tonight my sister had a party at her house, and again, I just couldn't bring myself to go. I can't really explain it, but seeing Nicola looking so sick and so out of it just really bothers me. I didn't want to take her out, I wouldn't dare risk exposing her external factors let alone other people in case she got sick... yet I also couldn't bring myself to take the other girls and leave her here. Something in her eyes today just told me that I needed to stay close.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">So, yet again, my girls miss out on something else that they wanted to do. Don't get me wrong, I tried to buy them off... I gave them ravioli for dinner, which is something of a treat because it's so expensive! I let them have lemonade and ice cream, I let them have a bubble bath with Jessica's special Princess Jelly Bubbles that Kieran gave her for her birthday.... and I let them have a movie at bed time...</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">But they know that they have missed out.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">They were good girls, they didn't raise a fuss, they didn't cry or shout or have a tantrum, they didn't get upset or yell or anything else. They accepted it with the relatively good grace that they have always shown in these situations... and I think it was that that hurt me the most...</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">Such a graceful acceptance of the inevitable, such a grown up attitude and behavior in the face of adversity...</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">Once more they are casualties of war.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">We are fighting an enemy that we cannot see, we cannot comprehend and we cannot fight. Or life has become a war and my biggest fear is that the casualties will be my children.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">All of them.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">No matter how hard I fight, I cannot protect them from the negative side of what we now call life. I worry about how they will handle everything, how they will cope with everything that is happening and everything that is yet to come.</span></div><div><br /></div><div><span style="font-family:Georgia, serif;">I want them to grow up to be happy, I want them to know that they are loved and wanted and that they are important to us. They might not have Nicola's medical issues or disabilities, they may not have her cancer, but they are important to us, and we love them dearly.</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">How do we juggle all of their needs at once? </span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">How do we chose which child's needs should be sacrificed in order to keep them all happy?</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">They are already prisoners of a war that is so far beyond anything that they could possibly understand... but how do we stop them from becoming casualties?</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">How do we fight this war? </span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;">How do we win?</span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><br /></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><br /></div><div><span style="font-family:Georgia, serif;"><br /></span></div><div><span style="font-family:Georgia, serif;"><br /></span></div>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com1tag:blogger.com,1999:blog-9186496698611708028.post-50616682658343158662012-07-16T20:12:00.003+10:002012-07-16T21:26:26.311+10:00The Baggage that Qantas Didn't Lose.<span style="font-family:Georgia, serif;"><span style="font-size: 100%;">I am going to preface this by saying that this is a highly emotional post from me. It has been an incredibly long and difficult week. Nicola is in a downward spiral and I am surviving on minimal sleep and am supposed to be giving up </span>caffeine<span style="font-size: 100%;"> and chocolate so nerves are very very frayed.</span></span><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">This post in no way is intended to hurt, upset, isolate or otherwise denigrate any other individual or subset of individuals. It is simply an expression of feelings that I have been struggling with and are now really coming to the surface.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">If you are likely to be offended, please no not read on. Please do not read on then flame me or insult me for expressing my feelings. Thank you for your understanding.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; ">******************************************************************</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; text-align: center; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">How do you cope with the realisation that your life is just simply never going to be like anyone elses? That your trials are so hugely different that people struggle to imagine and the hope of any real comprehension is nothing but a pipe dream that is slowly fading to smoke?</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">It has been weighing on my mind for a while now that since Nicola's birth I struggle to make friends... most of my acquaintances seem to lump me and my life in the 'too hard' basket and move on, and I get that... there is not a whole lot of understanding of what my life is really like.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I have gotten quite good at dealing with the ignorance of strangers. I am used to it I guess. When we were leaving the Zoo in Melbourne I was with my friend Kirstin and there was a stranger who walked passed. He looked at Nicola, then did a double take. He looked again a third time and kept on staring as he moved away from us until he just about walked into a tree. The look on his face, well, I guess the only definition I can come up with is a bitter mix of contempt and disgust. </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Kirstin was horrified by his response, and with a look of complete incredulity on her face she turned to me and she asked "Does that happen often?"</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">All I could say was "Yes."</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">It doesn't bother me much any more, I guess my skin has just gotten thicker. I remember once when I was leaving the Mater in Brisbane with Nicola in her stroller there was an older couple who passed us in the corridor. She nudged her husband and indicated toward Nicola and said "She's got a right funny face on her that one!" And I just lost it. I rounded on her with the fury of a mother scorned and I told her precisely what I thought of her ignorance, her rudeness and her plain stupidity! </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">It hurt me to think that there was someone who thought that my daughter was less than perfect.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">To me she is my sun... and God knows, I spend enough time awake with her at night for her to be my moon too.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I guess that is why I think the trip to Melbourne was such a bitter pill to swallow for me. Everything we did, I was faced with the realisation that we were doing it because of Nicola, because she has cancer, because we were told to make our memories now.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Everything we did was with the knowledge that it may be the last chance we get to make these memories together, as a family.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">On the weekend I was talking to a 'friend' (and I use that term rather loosely, really I guess we definitely are more like acquaintances) told me how lucky we were to have a free holiday.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I can say with complete honesty that I felt like I had been slapped in the face with a besser brick. </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I mean... you've GOT to be kidding me... Right??</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Free??</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I looked at her and I said to her "Would you trade one of your children for a holiday?" At which point she laughed like I had made the biggest joke of the year.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I guess from her perspective it's not more than a joke, I mean, she's not faced with my reality is she? </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">But to me, it's not a joke, and that holiday most certainly wasn't 'free'. </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Perhaps it didn't cost us a whole lot in terms of actual money spent... but at the end of the day, money can be recouped. </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Our daughter's life cannot.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">What we got wasn't really a holiday, it was a consolation prize. A "Gee, I'm sorry your daughter has this horrible life threatening medical condition and I'm sorry that she has got cancer that is likely to be untreatable... but because of all that we'll give you this holiday and it's all good!"</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">And more and more lately I'm starting to realise how incredibly short Nicola's straw really has been.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I see her 'peers' (Other Children with Costello Syndrome) who are reaching milestones... sitting up, standing, first steps, tube weaning, etc... most of them much younger than Nicola, and it reminds me again and again how far behind the 8 ball we are.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">We are very very rapidly approaching Nicola's 4th birthday. At this age she should be able to sit, stand, run, walk, talk, interact... she should be able to do so much, yet she can't. She is not on par with normal children, she is not on par with other Costello Children... she is so far behind... and it hurts.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Don't get me wrong, I don't begrudge other parents their joy at their child reaching milestones... but sometimes, tonight especially, I can't help but sit back and ask "When is it going to be our turn?"</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">When will we get to celebrate milestones like everyone else?</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I mean milestones other than 'first chemo', or 'first blood transfusion', or 'first tube replacement'.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">We are nearing the end of Nicola's chemo regime, with only 5 weeks remaining, and I think that is exacerbating my feelings at the moment.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">For the last 38 weeks we have cruised along in our own little world. We don't quite fit in anywhere, we are too complex for any support group to understand, so we kind of just drift along dealing with things in our own way...</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">But now, I see other families who have finished chemo and they're slipping back into a 'normal' life, and I just don't see how we can do that.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Even post chemo, our 'management' plans are more complex than everyone elses. Nicola will not be in remission. She will not be NED (No Evidence of Disease). She will still have a 10cm tumor in her pelvis. Where most kids go onto a monitoring regime of scans every 3 months, Nicola will be having scans every month... and every day in between will be filled with a feint cold fear of what the next scan will find. </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">So, we will be the parents with the child who still cannot sit, stand, walk or talk, who needs huge doses of strong pain medications and anti anxiety drugs just to get through every day, and we will live lives in constant fear of what is laying around the corner... all the while sitting back and watching everyone around us live their lives, celebrate their milestones and moving onward and upward.</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">I love my daughter and I cannot imagine my life without her. She brings us so much joy and happiness. She is cheeky and precocious and so very very precious... and the thought that there is a day looming in the future where I will not have her in my life just hurts me so very very badly... </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Why can't, just for once, we have sunshine and lollipops for her, a ticker tape parade and 76 trombones and all that jazz?</div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; ">Why does the time I get to spend with her have to be filled with so much hurt?? </div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div><div style="font-family: Georgia, serif; font-size: 100%; font-style: normal; font-variant: normal; font-weight: normal; line-height: normal; "><br /></div>Crazy Mammahttp://www.blogger.com/profile/05496911983809359947noreply@blogger.com1