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<title>Words For Snow</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/" />
<modified>2008-04-12T05:05:46Z</modified>
<tagline>Tastes Like Lime Jello - Feels Like Love</tagline>
<id>tag:www.wordsforsnow.org,2008://2</id>
<generator url="http://www.movabletype.org/" version="3.15">Movable Type</generator>
<copyright>Copyright (c) 2008, Suzie</copyright>
<entry>
<title></title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2008/04/post.html" />
<modified>2008-04-12T05:05:46Z</modified>
<issued>2008-04-12T05:05:34Z</issued>
<id>tag:www.wordsforsnow.org,2008://2.4967</id>
<created>2008-04-12T05:05:34Z</created>
<summary type="text/plain"></summary>
<author>
<name>Suzie</name>
<url>http://www.wordsforsnow.org</url>
<email>suzie@wordsforsnow.org</email>
</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p><img alt="roscoebun.jpg" src="http://www.wordsforsnow.org/images/roscoebun.jpg" width="400" height="411" /><br />
</p>]]>

</content>
</entry>
<entry>
<title>cough *june* cough</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2007/11/cough_june_coug.html" />
<modified>2007-11-12T01:00:31Z</modified>
<issued>2007-11-11T21:49:36Z</issued>
<id>tag:www.wordsforsnow.org,2007://2.4966</id>
<created>2007-11-11T21:49:36Z</created>
<summary type="text/plain"> Um,see any names you recognize here? I can&apos;t tell you how excited I am about this. If you are...</summary>
<author>
<name>Suzie</name>
<url>http://www.wordsforsnow.org</url>
<email>suzie@wordsforsnow.org</email>
</author>
<dc:subject>Knittiness</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p><a href="http://www.wordsforsnow.org/images/knittyjune.jpg"><img alt="knittyjune.jpg" src="http://www.wordsforsnow.org/images/knittyjune-thumb.jpg" width="450" height="352" /></a></p>

<p><br />
Um,see any names you recognize <a href="http://knitty.com/blog/2007/11/who-won-calendar-contest.html">here</a>?  I can't tell you how excited I am about this.  </p>

<p>If you are on my Christmas list, there is a verrrrry good chance you are getting a calendar this year.</p>]]>

</content>
</entry>
<entry>
<title>&quot;hi whale!  nice to meet you!&quot;</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2007/11/hi_whale_nice_t.html" />
<modified>2007-11-11T05:06:30Z</modified>
<issued>2007-11-11T04:59:14Z</issued>
<id>tag:www.wordsforsnow.org,2007://2.4965</id>
<created>2007-11-11T04:59:14Z</created>
<summary type="text/plain"> I used to travel a lot. My passport has a lot of stamps, and I have a lot of...</summary>
<author>
<name>Suzie</name>
<url>http://www.wordsforsnow.org</url>
<email>suzie@wordsforsnow.org</email>
</author>
<dc:subject>On The Road Again</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p><a href="http://www.flickr.com/photos/wordsforsnow/sets/72157602967526314"><img alt="1938202617_9a972dc0ae.jpg" src="http://www.wordsforsnow.org/images/1938202617_9a972dc0ae-thumb.jpg" width="450" height="435" /></a></p>

<p><br />
	I used to travel a lot.  My passport has a lot of stamps, and I have a lot of great memories.  I knew after Josie was born we would stop taking  spontaneous weekend trips or exotic vacations, and basically that has been true.  I thought I would miss it, and of course, sometimes I do.  But, what I didn't know was how much fun it is to see new things through the eyes of a child.  We changed our planned Orlando itinerary  to return to Sea World, so Josie could spend more time with the dolphins.  We spent our vacation at overpriced theme parks, with no fancy dinners or new languages or historical locations.  We didn't ride any roller coasters.  We just walked around in the beautiful weather and looked at whales.</p>

<p>I know it sounds corny, but even though the before Josie me would have HATED this trip,  it was the best vacation I have ever had.  I keep a store of purely happy moments  in my heart that I  remember when things are stressful, days like <a href="http://www.wordsforsnow.org/archives/2005/04/honey_youre_the.html">this</a> or <a href="http://www.wordsforsnow.org/archives/2004/04/married.html">this</a>.  Now the memory of Josie's face every time the orca swam by is another.<br />
</p>]]>

</content>
</entry>
<entry>
<title>everything&apos;s better down where it&apos;s wetter</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2007/11/everythings_bet.html" />
<modified>2007-11-09T03:14:13Z</modified>
<issued>2007-11-09T03:05:43Z</issued>
<id>tag:www.wordsforsnow.org,2007://2.4964</id>
<created>2007-11-09T03:05:43Z</created>
<summary type="text/plain">First off, I didn&apos;t mean to sound quite so maudlin. I know how lucky I am, most days. And I...</summary>
<author>
<name>Suzie</name>
<url>http://www.wordsforsnow.org</url>
<email>suzie@wordsforsnow.org</email>
</author>
<dc:subject>On The Road Again</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p>First off, I didn't mean to sound quite so maudlin.  I know how lucky I am, most days. And I work on knowing it the rest of the days.  </p>

<p>Anyway, it's all good because we are curently on vacation.  Josie loves whales and sharks and dolphins, and so it was<a href="http://flickr.com/photos/wordsforsnow/sets/72157602967526314/"> back to Florida</a> for us.  We're having a really nice time, too.  It has been a low key, early to bed, late to rise sort of trip, which was exactly what all of us needed.  </p>

<p>Tomorrow we are headed BACK to Sea World becuase Josie can't stop chattering on about the whales.  Only I would have a toddler who would make me feel guilty for forcing Disney World on her, when she could be happily staring at sharks.</p>]]>

</content>
</entry>
<entry>
<title>Happy Halloween!</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2007/10/happy_halloween.html" />
<modified>2007-10-31T22:35:33Z</modified>
<issued>2007-10-31T20:15:56Z</issued>
<id>tag:www.wordsforsnow.org,2007://2.4962</id>
<created>2007-10-31T20:15:56Z</created>
<summary type="text/plain"> .flickr-photo { border: solid 2px #000000; } .flickr-yourcomment { } .flickr-frame { text-align: left; padding: 3px; } .flickr-caption {...</summary>
<author>
<name>Suzie</name>
<url>http://www.wordsforsnow.org</url>
<email>suzie@wordsforsnow.org</email>
</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p><style type="text/css"><br />
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<div class="flickr-frame">
	<a href="http://www.flickr.com/photos/wordsforsnow/1795007063/" title="photo sharing"><img src="http://farm3.static.flickr.com/2396/1795007063_7b5640ecd5.jpg" class="flickr-photo" alt="" /></a>
<br />
	<span class="flickr-caption"><a href="http://www.flickr.com/photos/wordsforsnow/1795007063/">are you a good witch, or a bad witch?</a>, originally uploaded by <a href="http://www.flickr.com/people/wordsforsnow/">wordsforsnow</a>.</span>
</div>
				
<p class="flickr-yourcomment">
	
</p>

<p>On the subject of Halloween, just how is one to ask a toddler what she wants to dress as?  She didn't GET what a costume was, until I got her TWO she DIDN'T like.  Now, she understands and wants to be a "shiraffe!"  Too late, kid.  You'll be a witch and like it.</p>

<p>And on the subject of Josie, just how is one to survive motherhood?   I am so very grateful for our first blissful year as a family. In spite of my underlying anxiety, crazy hormones and the instability at work I mostly sailed through, without the constant "what ifs?" that have followed me my whole life.</p>

<p>Now, I worry every day.  She is doing well from a medical perspective, but I have trouble... letting it go.  If you met her, you probably wouldn't notice that she is not as strong as other kids.  She is talkative and bossy and opinionated, and a <a href="http://www.flickr.com/photos/wordsforsnow/1795007119/">great dancer</a>, but she can't skip.  Or jump, or climb or run.  Rough surfaces are hard for her to navigate, but if you <a href="http://www.flickr.com/photos/wordsforsnow/sets/72157602421502244/">saw us at the pumpkin patch</a> you'd probably think she was just very sweet, and liked to hold her mother's hand.  I don't think most people realize that she <i>has</i> to hold on.  </p>

<p>I feel like a bad person a lot.  I constantly scan other toddlers.  I am jealous of mothers who don't marvel when their child navigates the slide.  I am jealous of women who have more than one healthy child.  And when I say jealous, I mean that deep, powerful, pit of your stomach jealousy.  The ability to just believe it will be OK, more than once? The first time is different, because you don't know.  You don't know just how much you will love and worry about that little person.  The first time, you can believe it will all be OK, but the second time...  how do you do it all a second time? I think about what my faulty genes could do to another baby every. single. hour.  I feel so responsible for what is "wrong" with her that it makes me cry almost every day.</p>

<p>Anyway,  I hope you all have a happy and safe holiday.   Happy Halloween!</p>]]>

</content>
</entry>
<entry>
<title>sox + red = awesome</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2007/10/sox_red_awesome.html" />
<modified>2007-10-28T00:54:58Z</modified>
<issued>2007-10-28T00:54:52Z</issued>
<id>tag:www.wordsforsnow.org,2007://2.4961</id>
<created>2007-10-28T00:54:52Z</created>
<summary type="text/plain"> .flickr-photo { border: solid 2px #000000; } .flickr-yourcomment { } .flickr-frame { text-align: left; padding: 3px; } .flickr-caption {...</summary>
<author>
<name>Suzie</name>
<url>http://www.wordsforsnow.org</url>
<email>suzie@wordsforsnow.org</email>
</author>

<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p><style type="text/css"><br />
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</style></p>

<div class="flickr-frame">
	<a href="http://www.flickr.com/photos/wordsforsnow/1779843493/" title="photo sharing"><img src="http://farm3.static.flickr.com/2136/1779843493_5aa1fc8c76.jpg" class="flickr-photo" alt="" /></a>
<br />
	<span class="flickr-caption"><a href="http://www.flickr.com/photos/wordsforsnow/1779843493/">sox + red = awesome</a>, originally uploaded by <a href="http://www.flickr.com/people/wordsforsnow/">wordsforsnow</a>.</span>
</div>
				
<p class="flickr-yourcomment">
	Enough said for now.  <br />
<br />
I officially am Advanced Maternal Age, and the Sox being in the World Series is causing me great emotional strife, because my ovaries say- More Babies!  The baseball gods have deemed it so!<br />
<br />
Josie wasn't fired from physical therapy.  My work remains changing and chaotic.  We are chugging along.
</p>]]>

</content>
</entry>
<entry>
<title>the chameleon was black in the long winter night</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2007/08/the_chameleon_w.html" />
<modified>2007-08-22T22:25:02Z</modified>
<issued>2007-08-22T22:06:54Z</issued>
<id>tag:www.wordsforsnow.org,2007://2.4959</id>
<created>2007-08-22T22:06:54Z</created>
<summary type="text/plain">As I was walking out of the house this morning I realized I wasn&apos;t completely sure that I had brushed...</summary>
<author>
<name>Suzie</name>
<url>http://www.wordsforsnow.org</url>
<email>suzie@wordsforsnow.org</email>
</author>
<dc:subject>Living the Life</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p>As I was walking out of the house this morning I realized I wasn't completely sure that I had brushed my hair today.  However, as I was sure I had brushed my teeth and put on deodorant I figured I was doing pretty darn good, and kept going.  Which more or less sums up our lives around here lately.  We're doing good enough.</p>

<p>Josie is great.  Josie is really, really great.  We've completed the hurdles that were set in front of us, and have finished our cardiology consult (heart sounds good!  OK to put off further work-up!), the MRI (negative, and may I never have to sedate my child again) and the Neuromuscular consult.  Our diagnosis is currently a congenital myopathy, that does not seem to be progressive.  In plain words, Josie is clumsy.  Her diagnosis would need a muscle biopsy to have a Name, and we're pretty content not to have a name for now.  Josie is doing so well in physical therapy that she may be "fired" in September.  The future may hold more genetic testing or a muscle biopsy, but we're not thinking about that now.  She's OK, and we're happy with that.</p>

<p>Our life at home has been chaotic.  Our computer crashed, hence the radio silence.  (And if you emailed me in the last few weeks and I didn't reply please don't take offense.)  We also had a steady flow of visitors in our home for the last seven weeks.  Josie is blessed to have family that loves her.  I'm happy the house is back to just the three of us.  It's quieter. </p>

<p>My professional life continues to be a source of stress.  There have been a lot of changes, and a lot of "a Very Bad Thing is going to happen!!" and then "Nevermind!", followed by "Yes!!  The Bad Thing. And Maybe the Worst Thing, too!" and then... well, you get the picture.  After a lot of crying and sleepless nights and discussions at home, I came to the decision that I am committed to working at my office for at least the next year, Bad Things or no.  I feel that I owe the people of the community a steady presence.  This was a very hard decision to come too, since when we made it we were actively trying to add another family member.</p>

<p>In ten years, I worry that I will look back on these years and regret that I may have delayed my only chance to have another baby.  But at the same time, I do not feel that I can walk away from a position and town and people that I have come to care about when things get tough.  I've put a lot of my life into being a good doctor, and walking away now feels like abandonment.  </p>

<p>I'm scared now that we have lost momentum we may not ever have another baby, and that I may regret the decision later.  Right now though, it doesn't feel fair to the family I do have to maintain my work schedule, and my home schedule along with a pregnancy.  I like the family I have now.  Maybe we're meant to stay the way we are.  </p>

<p>Did I mention how great Josie is doing?  </p>]]>

</content>
</entry>
<entry>
<title>grace is just the measure of a fall</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2007/06/grace_is_just_a.html" />
<modified>2007-06-18T17:40:04Z</modified>
<issued>2007-06-18T17:28:01Z</issued>
<id>tag:www.wordsforsnow.org,2007://2.4958</id>
<created>2007-06-18T17:28:01Z</created>
<summary type="text/plain">I’ve been really struggling these last few weeks. Josie continues to get stronger, but the progress is so slow. Some...</summary>
<author>
<name>Suzie</name>
<url>http://www.wordsforsnow.org</url>
<email>suzie@wordsforsnow.org</email>
</author>
<dc:subject>Living the Life</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p>I’ve been really struggling these last few weeks.  Josie continues to get stronger, but the progress is so slow.  Some days she doesn’t walk independently at all, but most days she takes a few steps.  Her neurologist, geneticist and pediatrician are all coming to the same conclusion, that her problems are likely muscular.  We’re headed towards a muscle biopsy to pin down the diagnosis, but before this I have agreed to the cardiac and neurologic testing that has been recommended.  By holding off so long, I truly thought I was making the best decision for her.  I’m not so sure now.  These days I’m not sure of anything.  </p>

<p>In my heart I still truly believe that there is no serious problem, and that she will be OK.  </p>

<p>We went to a party over the weekend.  When we are in public I feel on edge and defensive, because I know I am surrounded by doctors who know their pediatric milestones.  I feel angry with myself for caring what they think, and so very protective of my daughter that I wonder if I will explode.  The truth is, Josie walks pretty well these days when she is holding my hand, and is happy and verbal.  Other mothers of similar age toddlers are too busy pulling their own children out of fish ponds or off of stairs, and usually end of interpreting Josie’s more sedate nature as good behavior.  I hate myself for not being able to accept their compliments on her pleasantness for how they mean them.  </p>

<p>I have been struggling on a professional level as well.  I continue to love being a family physician, but the system continues to escalate demands with increasingly limited resources.  I feel stretched too thin, and I’m not sure how much longer I can maintain my current schedule.  There are ominous signs that things may be getting even worse, and I’m afraid I’m reaching my breaking point.  There have been a lot of rough patches these past two years that I have got through by assuring myself that things are bound to get better.  But- maybe things <i>aren’t</i> going to get better.  I feel a very powerful sense of obligation to stay for the people of the community I serve, but I am beginning to wonder if I am sacrificing my mental and physical health for nothing.   </p>

<p>I have a baseline (mostly functional) level of anxiety, and I understand that there are days or weeks at a stretch that I bump it up just a smidgen, into the barely functional, occasional panic attack range. I know I’ll come through this, but right now I’m taking it day by day.<br />
</p>]]>

</content>
</entry>
<entry>
<title>place holder</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2007/06/place_holder.html" />
<modified>2007-06-12T02:01:37Z</modified>
<issued>2007-06-12T01:58:03Z</issued>
<id>tag:www.wordsforsnow.org,2007://2.4957</id>
<created>2007-06-12T01:58:03Z</created>
<summary type="text/plain"> There is a lot of goings on lately, and my anxiety level is High. Meanwhile, I’m grateful everyday for...</summary>
<author>
<name>Suzie</name>
<url>http://www.wordsforsnow.org</url>
<email>suzie@wordsforsnow.org</email>
</author>
<dc:subject>Living the Life</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p><a href="http://www.wordsforsnow.org/images/lomodadandjo.jpg"><img alt="lomodadandjo.jpg" src="http://www.wordsforsnow.org/images/lomodadandjo-thumb.jpg" width="340" height="268" /></a></p>

<p>There is a lot of goings on lately, and my anxiety level is High. </p>

<p>Meanwhile, I’m grateful everyday for my family, so there’s that.<br />
</p>]]>

</content>
</entry>
<entry>
<title>happy ending</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2007/05/happy_ending.html" />
<modified>2007-05-17T21:43:24Z</modified>
<issued>2007-05-17T21:39:33Z</issued>
<id>tag:www.wordsforsnow.org,2007://2.4956</id>
<created>2007-05-17T21:39:33Z</created>
<summary type="text/plain">Tim says the things people tell me aren’t normal. My whole life strangers have told me secrets. Women in the...</summary>
<author>
<name>Suzie</name>
<url>http://www.wordsforsnow.org</url>
<email>suzie@wordsforsnow.org</email>
</author>
<dc:subject>Living the Life</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p>Tim says the things people tell me aren’t normal.  My whole life strangers have told me secrets.  Women in the frozen food aisle tell me about their health problems and hotel clerks tell me about their parents.  Tim always shakes his head when we are together when this happens.  He says strangers don’t do this to him, but I’ve never thought it was that strange.  </p>

<p>Anyway, back in March <a href="http://www.flickr.com/photos/wordsforsnow/428480789/">I gave up my beloved Mini Cooper</a>.  I hated to do it, but practicality prevailed, and I traded Archie in on a bigger family-friendly vehicle.  Yesterday a woman from Morgantown called my office.  Last month she had purchased the car, and had somehow she had tracked me down.  She said that her husband and mechanic had told her that the car had been so well cared for that she knew that I must have loved it.  She explained that she loved it as well, and was taking good care it.  We ended up talking about her plans for retirement, her husband, her job and her grown children.  I was tickled that she had taken the time to update and thank me for my maintenance, and of course, was thrilled to hear that Archie had found such a good home.  I didn’t think too much more about it, but when I got home Tim laughed at me.  He says things like this don’t happen to "normal" people.  Pfft.<br />
</p>]]>

</content>
</entry>
<entry>
<title>today</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2007/05/today.html" />
<modified>2007-05-17T02:29:17Z</modified>
<issued>2007-05-17T02:13:42Z</issued>
<id>tag:www.wordsforsnow.org,2007://2.4955</id>
<created>2007-05-17T02:13:42Z</created>
<summary type="text/plain">Being a mother of a (theoretical) biped is awesome, but since life isn’t a Lifetime movie Josie isn’t magically all...</summary>
<author>
<name>Suzie</name>
<url>http://www.wordsforsnow.org</url>
<email>suzie@wordsforsnow.org</email>
</author>
<dc:subject>josie girl</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p>Being a mother of a (theoretical) biped is awesome, but since life isn’t a Lifetime movie Josie isn’t magically all better.  Her motor skills are still significantly delayed, and we still don’t now why.  The difference is, I’m more at peace with not knowing. </p>

<p>We are concentrating on helping Josie get better, and the rest- future babies, chromosomal analysis and specialists can wait for now.   My whole life I have struggled with living in the now, but I can think of easier ways to practice this lesson.  Maybe  Josie is teaching me more than I can ever teach her.  </p>]]>

</content>
</entry>
<entry>
<title>top of the world</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2007/05/top_of_the_worl.html" />
<modified>2007-05-09T11:36:19Z</modified>
<issued>2007-05-08T15:10:35Z</issued>
<id>tag:www.wordsforsnow.org,2007://2.4954</id>
<created>2007-05-08T15:10:35Z</created>
<summary type="text/plain"> It’s been a hard week, or rather; it has been a very emotional week. Today Josie was unable to...</summary>
<author>
<name>Suzie</name>
<url>http://www.wordsforsnow.org</url>
<email>suzie@wordsforsnow.org</email>
</author>
<dc:subject>josie girl</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p><img alt="walking.jpg" src="http://www.wordsforsnow.org/images/walking.jpg" width="350" height="551" /></p>

<p>It’s been a hard week, or rather; it has been a very emotional week.  Today Josie was unable to sit still long enough for her echocardiogram.  We had scheduled the test at my local hospital rather than the large children’s hospital in Pittsburgh.  I thought this made sense from a convenience standpoint- less time off work (actually, no time off, because I was just able to run upstairs at lunch) and ease of scheduling.  Because I am an enormous dope I did not anticipate either her failure to cooperate or the fact that I would run into every patient I have ever had.  I am a family doctor in a very small town, full of very nice people, and if you think that a horde of very nice people are going to let their doctor’s daughter be whisked by with no introductions you are very sadly mistaken. Let’s face it, I was wearing my badge and on their turf, so I cannot blame them for asking me to put my doctor hat on, and do my best to remember names and medical history and let them admire Josie. They didn’t know I was actually wearing my mom hat, and wanting to cry over the fact that we were now going to be forced to have a sedated procedure, more drama, more waiting.  It was a very stressful five minutes, and it felt like five years.</p>

<p>After Tim had brought Josie home we talked about everything on the phone and both basically came to the same conclusion.  Enough.  Stop.  No more shot in the dark tests, no more specialists.  We looked at the two camps that have formed- one of our pediatrician and physical therapist, which feel Josie will be OK with time and effort, and the doom and gloom geneticist.  We decided to throw in on the optimistic side and focus on therapy.  Josie has been poked and prodded and tested and it hasn’t given us any answers.  So, no MRI, no echo, no skeletal survey, no more anything unless a doctor can tell me that it will change the outcome of what we are already doing.  </p>

<p>The part we didn’t talk about was what this decision meant for having future children, but in my heart I said enough to that too.  If sparing Josie the barrage of testing means no more children, then I should be grateful for the healthy and joyful child I do have.</p>

<p>And then tonight, Josie took five steps all on her own.  Just like that.  And she did it again, and again and again.  She has to start from a standing position, and she can’t stand independently, but she can walk.  I’m sure we still have months of therapy, and braces and hard work ahead of us, but she can walk.  She will walk, and those few seconds when she just let go were like the first time I saw her face.  It was that good.  <br />
</p>]]>

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</entry>
<entry>
<title>crystal ball</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2007/04/crystal_ball.html" />
<modified>2007-05-01T03:19:15Z</modified>
<issued>2007-05-01T03:05:17Z</issued>
<id>tag:www.wordsforsnow.org,2007://2.4953</id>
<created>2007-05-01T03:05:17Z</created>
<summary type="text/plain">We’re living a very good news- bad news sort of life lately. The pendulum has been swinging so widely from...</summary>
<author>
<name>Suzie</name>
<url>http://www.wordsforsnow.org</url>
<email>suzie@wordsforsnow.org</email>
</author>
<dc:subject>josie girl</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p>We’re living a very good news- bad news sort of life lately.  The pendulum has been swinging so widely from side to side it has been a little hard to know how to feel but in my heart of hearts, I know Josie will be OK.  I just do.</p>

<p>For the most part, I’ve come to terms with our hard genetics visit.  Today we had a visit with Josie’s pediatrician to re-check her ears and catch him up on the latest developments.  The good news is that after three months of antibiotics her ears are finally better.  I told her doctor how hard the appointment had been, and that the geneticist had told Tim and I not to have any children until we had a good answer to explain her condition.  He very correctly pointed out that if Josie <i>does</i> have a genetic muscle or connective tissue disorder there is no way to predict how future children will be affected.</p>

<p>I guess I was too busy being hurt to think about it from a more practical angle.  Josie has weak lower extremities, but in theory, a future baby could have facial deformities, a heart defect or deafness.  Most conditions that Josie are being evaluated for are not detectable with prenatal testing because they do not cause conditions that lead to a shorter life span or mental retardation.  It makes sense that current research money and effort is being focused on developing testing for diseases that need immediate treatment when a baby is born.  </p>

<p>This brings us to our current dilemma.  How much disability are we willing to inflict on a hypothetical child?  The hypothetical part is key here of course.  If I were told an unborn baby of mine had a severe birth defect I would be grateful for the forewarning to be prepared emotionally and medically, so that is not the question.  </p>

<p>What if we learn the combination of our genetic code has a good chance of producing a child with a severe cleft palate?  This theoretical child could be as smart and funny and full of joy as the J Bear, and once conceived I would of course never consider terminating a baby that an ultrasound showed had a facial deformity.  But, how would I feel afterwards when Theoretical Baby had to go through a series of operations, and had recurrent ear infections?  How would I feel when she came home from school crying because kids picked on her because she looked different?  How would it she feel about a mother who knew she had faulty genes and inflicted them on her child anyway?</p>

<p>See the problem?  There’s no question about loving your already born child. And, there is a 3-5% chance of having a baby with congenital birth defects even with "normal" DNA.  But, what if you have a 50% chance of having a baby who will be smart and healthy, but will look different.  Is it selfish to have that baby?  It is shallow to even worry about it?</p>

<p>I don’t know. <br />
</p>]]>

</content>
</entry>
<entry>
<title>i know that it will break your heart the way things are</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2007/04/i_know_that_it.html" />
<modified>2007-04-24T00:33:23Z</modified>
<issued>2007-04-24T00:27:01Z</issued>
<id>tag:www.wordsforsnow.org,2007://2.4952</id>
<created>2007-04-24T00:27:01Z</created>
<summary type="text/plain">Boy, did we need a vacation. For almost a solid week I just enjoyed my family. I remembered how fortunate...</summary>
<author>
<name>Suzie</name>
<url>http://www.wordsforsnow.org</url>
<email>suzie@wordsforsnow.org</email>
</author>
<dc:subject>josie girl</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p>Boy, did we need a vacation.  For almost a solid week I just enjoyed my family.  I remembered how fortunate I am to have a husband who loves me, a daughter with a smile that crinkles her whole face and the means to get out of town to watch baseball and explore a new city and I did not cry even once.  After our good evaluation I ignored all the scary "what ifs?" in my head and just concentrated on the moment.  That’s hard for me.  And we’re not on vacation any more.</p>

<p>Today, instead of the daunting task of heading back to work we faced the even more daunting proposal of taking Josie to see a Medical Geneticist.  I warned Tim before we went that we would have to have a thick skin during the evaluation.  Geneticists are trained to find badness, and lump physical findings into syndromes, and it is their job to say mean things about babies.  I was prepared for the ear measuring and the nose appraising.  I wasn’t prepared to take it so personal.  </p>

<p>As a quick overview, we took Josie to see genetics to help find a reason for her hypotonia.  We already are seeing a neurologist to look for brain causes, and geneticists are the people who look for connective tissue disorders and errors of metabolism.  The doctor today was concerned enough about her findings to order six tubes of blood and an <a href="http://en.wikipedia.org/wiki/Echocardiography">echocardiogram</a>.  I know she was being conservative and thorough, but I didn’t expect to be so hurt by her ordering tests to evaluate for syndromes that I know that it is terribly unlikely that she has.  It turns out, I was the one who needed a thick skin.  Tim was fine.</p>

<p>Our problem is that Tim and I have the same goal- that Josie is healthy and happy.  We just have different approaches.  Tim is in the Test! Test! Test! camp.  I’m the exact opposite, because in my experience shotgun medical testing just tends to turn up random findings that complicate the picture and lead to more tests and more worry.  For instance, by ordering an echocardiogram there is a very small chance we will find that her heart murmur is part of an undiagnosed connective tissue disorder and a very large chance that it is just a regular old benign murmur.  However, there is also a fair chance that the echo will show some small, not really concerning, abnormality that we will have to keep and eye on and worry about forever.  It’s a cycle I didn’t want to start.  </p>

<p>I’m back to feeling down, and scared and overwhelmed by the whole process.   In the next month or so, Josie has appointments for orthotic casting, Neurology and Genetics follow-up, echocardiogram, her regular pediatrician (for her ear infection that has not cleared after two months of antibiotics) and weekly physical therapy.  The bloodwork to rule out Terrifying Syndrome(s) won’t be back for weeks.  Possibly being a doctor myself makes this harder, because I see the whole sequence playing out more clearly, and I also think it likely that other physicians are also treating my daughter more aggressively and conservatively because of her doctor mother.   Or maybe it makes it easier, because I understand the process of it all better.  I don’t know.  I just know I’m worried about Josie almost every second of the day.</p>

<p>Speaking of thick skins, at one point during today’s appointment the doctor looked at me and said with genuine concern, "You’re not pregnant <i>now</i> are you?"  It was obvious that the prospect of the two of us bringing another imperfect child into the world terrified her, and the words felt like a slap in the face.  I’d have another Josie in a minute, so we’ll just have to disagree on that one.  <br />
</p>]]>

</content>
</entry>
<entry>
<title>Play Ball</title>
<link rel="alternate" type="text/html" href="http://www.wordsforsnow.org/archives/2007/04/play_ball.html" />
<modified>2007-04-20T03:36:37Z</modified>
<issued>2007-04-20T03:32:39Z</issued>
<id>tag:www.wordsforsnow.org,2007://2.4951</id>
<created>2007-04-20T03:32:39Z</created>
<summary type="text/plain"> Tickets: $60 Canadian. New ballcap: $15 Canadian. Coke bigger than your head: $5 Canadian. Fourteen hours of hooting, hollering...</summary>
<author>
<name>Tim</name>

<email>tim@twentyone12.com</email>
</author>
<dc:subject>Red Sox Nation</dc:subject>
<content type="text/html" mode="escaped" xml:lang="en" xml:base="http://www.wordsforsnow.org/">
<![CDATA[<p><a href="http://www.flickr.com/photos/wordsforsnow/"><img src="/images/josie_coke.jpg" width="420" height="431" alt="Josie and the giant Coke" /></a></p>

<p>Tickets: $60 Canadian.<br />
New ballcap: $15 Canadian.<br />
Coke bigger than your head: $5 Canadian.</p>

<p>Fourteen hours of hooting, hollering and bouncing off the walls on your very first caffeine high while your mother rolls her eyes at your father repeatedly pointing out that he's to blame for your never ever wanting to sleep ever again:  Priceless.</p>]]>

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</entry>

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