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	<title>Girl in a Party Hat &#187; Phoenix Childrens Hospital</title>
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		<title>Breathing Lessons, Part 2</title>
		<link>http://girlinapartyhat.com/index.php/2009/02/breathing-lessons-part-2/</link>
		<comments>http://girlinapartyhat.com/index.php/2009/02/breathing-lessons-part-2/#comments</comments>
		<pubDate>Thu, 26 Feb 2009 18:23:58 +0000</pubDate>
		<dc:creator><![CDATA[Amysilverman]]></dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[cystic fibrosis]]></category>
		<category><![CDATA[Down syndrome]]></category>
		<category><![CDATA[leukemia]]></category>
		<category><![CDATA[lung cancer]]></category>
		<category><![CDATA[Phoenix Childrens Hospital]]></category>
		<category><![CDATA[Rose Johnson]]></category>

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		<description><![CDATA[I wanted to write about the science fair today, or maybe how I&#8217;m mad at the PTA, but I figure it&#8217;s best to get all the really sad stuff off my chest now. The bad pun&#8217;s intended, sort of. These days, it&#8217;s all about lungs. For a while, in our house, it was all about hearts. [&#8230;]]]></description>
				<content:encoded><![CDATA[<p>I wanted to write about the science fair today, or maybe how I&#8217;m mad at the PTA, but I figure it&#8217;s best to get all the really sad stuff off my chest now.</p>
<p>The bad pun&#8217;s intended, sort of. These days, it&#8217;s all about lungs.</p>
<p>For a while, in our house, it was all about hearts. Sophie had heart surgery twice before she was five. I&#8217;m not a religious person, but I looked for messages. The morning of the first surgery, when Sophie was four months old, they put us in an exam room &#8212; more like a holding cell &#8212; in the surgery prep area at Phoenix Childrens Hospital.</p>
<p>Did you know there&#8217;s an entire industry devoted to signage and design in hospitals, and, particularly at childrens hospitals, art? I walked into that tiny room and there on the wall was a drawing of a little girl holding a big, bright red heart.</p>
<p>The tears I&#8217;d fought back all morning welled up. I knew who the artist was before I looked: a woman named Rose Johnson, whose work for <em>New Times</em> I liked so much I commissioned her to do the artwork for our wedding program.</p>
<p>It was a sign. So what do the events of the last year mean?</p>
<p>Last May, my dear friend Cheryl broke the news that her longtime companion was in the final stages of lung cancer. In June, my mother-in-law received a similar diagnosis. In August, my grandfather drew his last breath &#8212; days later than he should have, because someone had turned the oxygen up too high for a 94-year-old man who was supposed be in hospice.</p>
<p>And in January, Jordan Sterling died. Growing up, I always sort of knew who the Sterlings were &#8212; the kids were a little younger, went to different schools, but our moms took ballet together (really) and we had mutual friends. Phoenix is not a large place, at least it wasn&#8217;t back then.</p>
<p>When I moved home, I worked for years with Jordan&#8217;s stepmother, Terry Greene Sterling, now a very close friend and mentor. So I heard a lot more about the Sterlings. Mostly, I have to admit, about their health. At my wedding, Terry wore a bright red suit and read a lovely, funny piece she&#8217;d written about how Ray and I met. (She introduced us.) Then she had to rush off; Jordan was in the hospital again.</p>
<p>There are three Sterling kids. Two were born with cystic fibrosis. I&#8217;m honestly not sure how vigilant the testing is these days for the genes that match up and give it to your baby. Thirtysome years ago, I think it was non-existent. So the Sterlings had no idea, til all three kids were born (the eldest is the one who doesn&#8217;t have it) that two had it.</p>
<p>Cystic fibrosis is a death sentence. The fact that Brooke and Jordan made it to their mid-30s is a testament to medical science, their families and their own incredible strength. The two took different paths, which I find fascinating. (You can read my friend and former colleague Megan Irwin&#8217;s story about the family here: <a href="http://www.phoenixnewtimes.com/2006-08-10/news/borrowed-time/">http://www.phoenixnewtimes.com/2006-08-10/news/borrowed-time/</a>)</p>
<p>Despite their disease, both Brooke and Jordan have had amazing lives, filled with friends and adventure, but also focused a lot on health. Brooke is all about the natural &#8212; she runs a yoga studio, sees a naturopath, worships her body. Jordan took the medical route: he had a double lung transplant years ago. For a while, it worked. But the anti-rejection drugs shot his kidneys and I don&#8217;t more detail than that other than the guy had something like 15 hospitalizations in a year. He died still hoping for a lung/kidney transplant.</p>
<p>At the funeral, I couldn&#8217;t look at his mother. </p>
<p>The night Jordan died, Terry left me a voicemail I heard right before bed, and as I tried to go sleep, I couldn&#8217;t get the thought out of my head: How could you live with yourself, knowing you&#8217;d brought this child &#8212; these two children &#8212; into the world with this horrible disease that would ultimately, quite literally, smother them?</p>
<p>And then, like a flash of lightning (really, I know it sounds dramatic, but that&#8217;s what it was like) I thought, &#8220;SOPHIE.&#8221;</p>
<p>My &#8212; our &#8212; situation isn&#8217;t so different.</p>
<p>No, Sophie does not have cystic fibrosis. And yes, I know, I&#8217;m opening myself up for attack, for daring to question the decision to bring a baby with Down syndrome into the world.</p>
<p>But this is not about her brain. So often, people think that&#8217;s all it&#8217;s about. What I&#8217;m thinking about is her heart. We were so lucky the doctors were able to fix it &#8212; twice. There could be a third time. And what about the other risks? Sophie was home the past two days with a fever, and I can&#8217;t say I didn&#8217;t stare at her yesterday and wonder, &#8220;Leukemia?&#8221;</p>
<p>(She&#8217;s fine today.)</p>
<p>A lot of days I stop and ask myself, &#8220;What if I brought this amazing little person  into the world and she dies an early, painful death because of my decision (or lack thereof)?&#8221; </p>
<p>How could I live with myself?</p>
<p>But really, I think, the bigger question is this: How can <em>anyone</em> ever have a baby and live with all the potential consequencesthat will follow that person around his or her entire life?  </p>
<p>Maybe it&#8217;s best to take a deep breath and focus on something else, like being mad at the PTA.</p>
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