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	<title>Three Ring Circus</title>
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	<lastBuildDate>Sat, 12 May 2012 07:47:52 +0000</lastBuildDate>
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		<title>&#8220;Hape Mumvis Ba&#8221;</title>
		<link>http://www.mythreeringcircus.com/2012/05/hape-mumvis-ba/</link>
		<comments>http://www.mythreeringcircus.com/2012/05/hape-mumvis-ba/#comments</comments>
		<pubDate>Sat, 12 May 2012 06:00:33 +0000</pubDate>
		<dc:creator>Tiff</dc:creator>
				<category><![CDATA[celebrations!]]></category>
		<category><![CDATA[Daily life]]></category>
		<category><![CDATA[grateful]]></category>
		<category><![CDATA[Nowie]]></category>
		<category><![CDATA[mother's day]]></category>
		<category><![CDATA[mothers day through the eyes of a child. Mothers day after being away for a long time.]]></category>

		<guid isPermaLink="false">http://www.mythreeringcircus.com/?p=7635</guid>
		<description><![CDATA[It&#8217;s Tuesday afternoon when we walk through the door and the boy has been busy growing and changing and such. &#8220;Do you know what is coming very soon?&#8221; he asks as he slips his arms around my belly. I play along; &#8220;no,&#8221; I say &#8220;is it my birthday?&#8221; He shakes his head and looks at [...]]]></description>
			<content:encoded><![CDATA[<p>It&#8217;s Tuesday afternoon when we walk through the door</p>
<p>and the boy has been busy growing and changing and such.</p>
<p>&#8220;Do you know what is coming very soon?&#8221; he asks as he slips his arms around my belly.</p>
<p>I play along;</p>
<p>&#8220;no,&#8221; I say</p>
<p>&#8220;is it my birthday?&#8221;</p>
<p>He shakes his head and looks at me as if I am silly</p>
<p>but he doesn&#8217;t speak it.</p>
<p>Instead he asks me for some paper and with all the confidence of a first grader he fashions a card with two people (he and I)</p>
<p>holding hands and smiling into the universe.</p>
<p>Inside the cover he has written some words, strung together -</p>
<p>&#8220;hape mumvis ba&#8221; it announces.</p>
<p>&#8220;It says happy mother&#8217;s day&#8221; he proclaims proudly.</p>
<p>Of course it does.</p>
<p>It does but it doesn&#8217;t</p>
<p>and it kind of sums up how I feel about celebrating my motherhood this year.</p>
<p>I am but I&#8217;m not.</p>
<p>At home I feel a little out of place.</p>
<p>My things are not where they usually are</p>
<p>and the kids are having to relearn who to defer to when they need things.</p>
<p>I have to relearn too.</p>
<p>It&#8217;s been hard to slip into the family again after so long away.</p>
<p>I feel like a ghost of sorts</p>
<p>or perhaps an almost mother -</p>
<p>you know,</p>
<p>the woman who is on the cusp of something big,</p>
<p>huge changes</p>
<p>a steep learning curve -</p>
<p>all of that multi tasking goodness that comes with being responsible for others.</p>
<p>The cook, the cleaner, the driver.</p>
<p>The peace keeper, the adjudicator, the judge.</p>
<p>The bedtime rangler and fixer of all things sad.</p>
<p>I&#8217;m not that, right now.</p>
<p>I am here and I am catching up.</p>
<p>Catching my breath.</p>
<p>I look at the white folded paper, the penciled in features of a mum and her son (he and I)</p>
<p>and the early attempts of  his spelling.</p>
<p>I want to laugh and I want to cry.</p>
<p>Everything is so mixed up, disheveled and not the life I left almost ten weeks ago now</p>
<p>but his love and his enthusiasm for me is steadfast.</p>
<p>&#8220;Hape mumvis ba,&#8221; I repeat,</p>
<p>all of the kids now gathered in the kitchen, observing our interaction</p>
<p>and he looks at me a little embarrassed because he thinks I am picking out his mistakes.</p>
<p>&#8220;Hape mumvis ba, I love it !&#8221; I tell him and give him the biggest cuddle I can muster.</p>
<p>I love it because it&#8217;s him at this age, in all of its beautiful imperfection</p>
<p>but I love it more because it&#8217;s me in all of mine.</p>
<p>So, to all of you &#8211; mothers in the making, mothers of one or many, mothers of little ones, big ones, angels lost.</p>
<p>Grandmothers, great grandmothers, mothers to others:</p>
<p>Hape Mumvis Ba !</p>
<p>Whether you celebrate or not, I hope your day is lovely</p>
<p>and may we all accept the person we are right now   &#8211; our perfectly imperfect selves.</p>
<p><a href="http://mythreeringcircus.com/wp-content/uploads/mothersdayweb.jpg"><img class="alignnone size-full wp-image-7642" title="mothersdayweb" src="http://mythreeringcircus.com/wp-content/uploads/mothersdayweb.jpg" alt="" width="800" height="533" /></a></p>
<p>&nbsp;</p>
]]></content:encoded>
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		<slash:comments>23</slash:comments>
		</item>
		<item>
		<title>Dear diary,</title>
		<link>http://www.mythreeringcircus.com/2012/05/dear-diary/</link>
		<comments>http://www.mythreeringcircus.com/2012/05/dear-diary/#comments</comments>
		<pubDate>Tue, 08 May 2012 08:05:55 +0000</pubDate>
		<dc:creator>Tiff</dc:creator>
				<category><![CDATA[hospital]]></category>
		<category><![CDATA[Ivy - girl]]></category>
		<category><![CDATA[diary entries]]></category>
		<category><![CDATA[wishes of a six year old girl]]></category>

		<guid isPermaLink="false">http://www.mythreeringcircus.com/?p=7626</guid>
		<description><![CDATA[Dear diary, In addition to the above; we hope to stay out of the hospital for a very long time. Could you please let The Universe know we&#8217;re done. We are going to spend some time finding our happy place again. &#160; Sincerely, the small girl and her mother.]]></description>
			<content:encoded><![CDATA[<p><a href="http://www.mythreeringcircus.com/wp-content/uploads/diaryentryweb.jpg"><img class="alignnone size-full wp-image-7627" title="diaryentryweb" src="http://www.mythreeringcircus.com/wp-content/uploads/diaryentryweb.jpg" alt="" width="800" height="533" /></a></p>
<p>Dear diary,</p>
<p>In addition to the above;</p>
<p>we hope to stay out of the hospital for a <em>very </em>long time.</p>
<p>Could you please let The Universe know we&#8217;re done.</p>
<p>We are going to spend some time finding our happy place again.</p>
<p>&nbsp;</p>
<p>Sincerely, the small girl and her mother.</p>
]]></content:encoded>
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		<slash:comments>21</slash:comments>
		</item>
		<item>
		<title>and they call this a children&#8217;s hospital.</title>
		<link>http://www.mythreeringcircus.com/2012/05/and-they-call-this-a-childrens-hospital/</link>
		<comments>http://www.mythreeringcircus.com/2012/05/and-they-call-this-a-childrens-hospital/#comments</comments>
		<pubDate>Mon, 07 May 2012 10:54:35 +0000</pubDate>
		<dc:creator>Tiff</dc:creator>
				<category><![CDATA[hospital]]></category>
		<category><![CDATA[Ivy - girl]]></category>
		<category><![CDATA[childrens hospital westmead]]></category>

		<guid isPermaLink="false">http://www.mythreeringcircus.com/?p=7619</guid>
		<description><![CDATA[I have seen a lot of hospital in my time as a parent but never in my life have I experienced anything like the treatment that Ivy (and I) received today. For a start we had waited for doctors for the last five days to come and consult but they just never turned up, our [...]]]></description>
			<content:encoded><![CDATA[<p><a href="http://www.mythreeringcircus.com/wp-content/uploads/photo120507M.jpg"><img class="alignnone size-full wp-image-7623" title="photo120507M" src="http://www.mythreeringcircus.com/wp-content/uploads/photo120507M.jpg" alt="" width="600" height="600" /></a></p>
<p>I have seen a lot of hospital in my time as a parent</p>
<p>but never in my life have I experienced anything like the treatment</p>
<p>that Ivy (and I) received today.</p>
<p>For a start we had waited for doctors for the last five days</p>
<p>to come and consult</p>
<p>but they just never turned up,</p>
<p>our weekend of gate leave cut short by a day because the anesthetist</p>
<p>failed to show up at all on Friday, so we were made to come</p>
<p>in the hope that someone would see Ivy on Sunday.</p>
<p>Nope.</p>
<p>So, this morning I knew that Ivy was on the emergency list</p>
<p>for aspiration of the abscesses</p>
<p>but we had no time for theatre, we had no plan and</p>
<p>I didn&#8217;t even know whether to keep her nil by mouth from midnight.</p>
<p>At around nine</p>
<p>(just when we were on our way to pathology to have bloods taken)</p>
<p>the anesthetic registrar turned up and</p>
<p>after being unable to find her notes,</p>
<p>asked me a bunch of questions about Ivy.</p>
<p>I told him she hated the mask</p>
<p>and that she was hard to cannulate</p>
<p>and that she needed midazolam as a pre med.</p>
<p>I told him she needed hydrocortisone just before she went into surgery</p>
<p>and that she had just spent the last eight weeks in the hospital</p>
<p>and was now frightened of anything to do with needles,</p>
<p>procedures and surgery.</p>
<p>He told me that  he understood and, although he was not the doctor who would</p>
<p>be present for the procedure,</p>
<p>that he would chart some oral midaz for Ivy.</p>
<p>He had no idea what time she was going to theatre</p>
<p>but encouraged us to go and have her bloods taken.</p>
<p>Which we did</p>
<p>and then we had a consult with the immunologist.</p>
<p>As we made our way back to the ward</p>
<p>I received a phone call telling me that surgery were ready for us.</p>
<p>When we got there all hell broke loose.</p>
<p>One nurse said she had no idea what was going on,</p>
<p>another told me they had been looking for us for hours</p>
<p>(clearly<em> that</em> was a lie)</p>
<p>and then the theatre nurse turned up.</p>
<p>She took it upon herself to yell at me and tell me</p>
<p>that I had kept everyone waiting and that I was lucky that they hadn&#8217;t</p>
<p>cancelled Ivy&#8217;s place.</p>
<p>Then she said that Ivy should have a pre med</p>
<p>and that it was <em>my </em>job to insist,</p>
<p>that she should have been cannulated first</p>
<p>and then had bloods while she was asleep and that she couldn&#8217;t have</p>
<p>anything to help her to relax now because there was no time.</p>
<p>We&#8217;d had no time to prepare Ivy</p>
<p>beyond the knowledge that she was to have surgery today</p>
<p>and all of a sudden people were poking her and prodding her</p>
<p>and pulling her in every direction.</p>
<p>Of course she stared to cry</p>
<p>and I did too.</p>
<p>The very unsympathetic &#8220;paediatric nurse&#8221; then told me</p>
<p>she didn&#8217;t have time for our upset and that I needed to get it together</p>
<p>for Ivy&#8217;s sake.</p>
<p>That made me feel so angry</p>
<p>because if all of this was for Ivy&#8217;s sake</p>
<p>then there would have been a good plan</p>
<p>and kind nurses</p>
<p>and doctors who actually turned up on time</p>
<p>to find out all about her little quirks and her allergies and her needs.</p>
<p>Instead the nurse told me if I didn&#8217;t like what she was offering I could refuse</p>
<p>and the surgery could be cancelled.</p>
<p>After waiting for five days inside the hospital</p>
<p>and three days before that at home for there to be any movement at all,</p>
<p>I told her that we would be going ahead.</p>
<p>Ivy was hysterical.</p>
<p>I carried her to the anesthetic bay because there was no bed ready</p>
<p>and no porter to push our invisible ride</p>
<p>but before we left the ward we were informed that we were being transferred</p>
<p>to<em> another </em>ward</p>
<p>and that our luggage would be removed from our room</p>
<p>and locked in a cupboard for collection later on.</p>
<p>None of this had been discussed previously with me.</p>
<p>In our own hospital this may not have been such a big deal.</p>
<p>I know it almost as well as the back of my hand</p>
<p>but we were a long way from home</p>
<p>I didn&#8217;t even know where the operating theatre was,</p>
<p>let alone a different ward.</p>
<p>In the anesthetic bay they made me hold Ivy&#8217;s arms down</p>
<p>so she wouldn&#8217;t fight the mask,</p>
<p>all the while telling me what a waste of their time this all was.</p>
<p>My girl did not get any of the things that she needed for surgery</p>
<p>but what I found so utterly disgusting is how cruel they were.</p>
<p>They call themselves a children&#8217;s hospital,</p>
<p>a place that is supposedly geared towards looking after tiny humans</p>
<p>and yet not once was Ivy taken into consideration.</p>
<p>The doctors all did what was best for them.</p>
<p>The nurses all looked after themselves</p>
<p>but nobody looked after my girl.</p>
<p>It was cruel and mean that they let her get that frightened,</p>
<p>that they had no set plan,</p>
<p>that everything was so disorganized that when it came time,</p>
<p>Ivy was petrified.</p>
<p>Even the immunologist had no idea that we had been moved</p>
<p>to another ward following the procedure.</p>
<p>Luckily, after recovery, which was also less than friendly</p>
<p>the nurses on the surgical ward were nice enough</p>
<p>and Ivy, for all intensive purposes, did well post operatively.</p>
<p>There is more but this post is already long and ranty</p>
<p>and I need to step back and reassess all that has happened</p>
<p>and try to find the good in today.</p>
<p>I am tired and so ready to go home,</p>
<p>which will hopefully be tomorrow</p>
<p>and let me tell you,</p>
<p>tomorrow can&#8217;t come soon enough.</p>
]]></content:encoded>
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		<slash:comments>71</slash:comments>
		</item>
		<item>
		<title>When charity really does start at home.</title>
		<link>http://www.mythreeringcircus.com/2012/05/when-charity-really-does-start-at-home/</link>
		<comments>http://www.mythreeringcircus.com/2012/05/when-charity-really-does-start-at-home/#comments</comments>
		<pubDate>Sat, 05 May 2012 14:20:54 +0000</pubDate>
		<dc:creator>Tiff</dc:creator>
				<category><![CDATA[grateful]]></category>
		<category><![CDATA[immune deficiency]]></category>
		<category><![CDATA[Ivy - girl]]></category>
		<category><![CDATA[Pay It Forward]]></category>
		<category><![CDATA[people helping people]]></category>
		<category><![CDATA[charity]]></category>
		<category><![CDATA[helping other people]]></category>
		<category><![CDATA[paying it forward]]></category>

		<guid isPermaLink="false">http://www.mythreeringcircus.com/?p=7609</guid>
		<description><![CDATA[Yesterday I put up this photo  on my Facebook page: with this status update: This morning we told the kids that it would cost around $2000 to buy the pump for Ivy&#8217;s subcutaneous immunoglobulin (Which our health fund should reimburse us for after purchase) and that things would be a little tighter for a while. [...]]]></description>
			<content:encoded><![CDATA[<p style="text-align: left;">Yesterday I put up this photo  on my Facebook page:</p>
<p><a href="http://mythreeringcircus.com/wp-content/uploads/pumpfundweb.jpg"><img class="alignnone size-large wp-image-7610" title="pumpfundweb" src="http://mythreeringcircus.com/wp-content/uploads/pumpfundweb-682x1024.jpg" alt="" width="682" height="1024" /></a></p>
<p>with this status update:</p>
<div id="id_4fa5309049cc06906981628"><strong>This morning we told the kids that it would cost around $2000 to buy the pump for Ivy&#8217;s subcutaneous immunoglobulin </strong></div>
<div><strong>(Which our health fund should reimburse us for after purchase) and that things would be a little tighter for a while. </strong></div>
<div><strong>Instead of grumbling about how much they would miss out on they got a jar and then fished through their piggy banks to donate to the pump fund. </strong></div>
<div><strong>$24 so far.</strong></div>
<div><strong>It just goes to show you how amazingly giving and understanding kids can be.</strong></div>
<div><strong>P.S. I love my children.</strong></div>
<div>What happened next was a cascade of amazing friends and family wanting to donate to the &#8220;pump fund&#8221;.</div>
<div>Can I just say here that the kindness and generosity of people leaves me in awe, every single day of my life.</div>
<div>That people want to help others, when I came from a father who was constantly telling me that</div>
<div>he &#8216;did it tough&#8217;, so I should have to as well and having lived like that</div>
<div>and struggling with accepting help from anybody,</div>
<div>it just blows me away.</div>
<div>Somehow it feels wrong to accept.</div>
<div>Tonight I have listened to all of the different perspectives, read a million offers of kindness and still I cannot wrap my head around it all.</div>
<div>Ivy will need a pump for her subcutaneous immunoglobulin.</div>
<div>The hospital will hire one out to us temporarily and supplies should cost around $90 to get her up and running.</div>
<div>We need to buy a pump, pay for it up front but our health insurance <em>should </em>reimburse us eventually.</div>
<div>Truth is, we don&#8217;t have that money right now.</div>
<div>In fact, after the last eight to  nine weeks of hospitalisation, we find ourselves in a very big financial hole</div>
<div>and it would be so easy to say yes, in some respects</div>
<div>but I don&#8217;t think I could</div>
<div>or should.</div>
<div>I honestly meant nothing more than to tell the world how proud I was of my kids.</div>
<div>A teacher at Ivy&#8217;s school suggested a trivia night and that is something that I could see as an opportunity to give something in return for the donation.</div>
<div>I thought if I could ask friends to donate goods and services that would be okay.</div>
<div><em>I </em>would feel okay with that</div>
<div>and then one friend said  that if I saw a need and I could I would help (which is true)</div>
<div>and then another friend suggested giving the money raised to a charity, once we were reimbursed for the cost of Ivy&#8217;s pump,</div>
<div>which, when I thought about it is a fantastic idea.</div>
<div>Pumps for the subcutaneous program here in NSW are few.</div>
<div>What if I could raise money for <em>more </em>pumps, so more kids like Ivy, who don&#8217;t have health insurance, could then get onto the program.</div>
<div>That would be wonderful.</div>
<div>Pay it forward in some way.</div>
<div>I&#8217;m still not sure what I&#8217;m doing.</div>
<div>I&#8217;ve said yes to the trivia night</div>
<div>and people are already offering things as prizes and things for raffle.</div>
<div>Aside from thank you, I honestly don&#8217;t know what to say or how to express my gratitude.</div>
<div>Friends are asking their friends and once again, I get the feeling that we could achieve something remarkable, something extraordinary</div>
<div>but what do you think?</div>
<div>Would you donate your craftiness for a cause?</div>
<div>If you were in the position where you needed help and people were offering, would you?</div>
<div>I know when I started Team Ivy and asked for donations to the ward that Ivy stayed in you all did amazing things in only three months</div>
<div>but that was different &#8211; it was for someone else, a cause,</div>
<div>a way to help others.</div>
<div>This seems like a charity all too close to home.</div>
]]></content:encoded>
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