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	<title>Mary Caruso &#187; family</title>
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	<description>Help find a treatment for Friedreich’s Ataxia!</description>
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		<title>One small step towards the starting line!</title>
		<link>http://www.openyourheart-marycaruso.info/2009/03/15/284/</link>
		<comments>http://www.openyourheart-marycaruso.info/2009/03/15/284/#comments</comments>
		<pubDate>Sun, 15 Mar 2009 23:16:01 +0000</pubDate>
		<dc:creator>Mary</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[challenge]]></category>
		<category><![CDATA[family]]></category>
		<category><![CDATA[love]]></category>
		<category><![CDATA[ride ataxia 3]]></category>

		<guid isPermaLink="false">http://www.openyourheart-marycaruso.info/?p=284</guid>
		<description><![CDATA[  I made it to Portland! (um- pouring rain!) just getting my jacket &#38; gear ready for tomorrow morning!   Well, it’s been a long 24 hours!  I was a nervous wreck that is for sure.  Not really for the bike ride but for the whole anticipation of the trip.  I get nervous just knowing [...]]]></description>
			<content:encoded><![CDATA[<p style="text-align: center;"> </p>
<p style="text-align: center;">I made it to Portland! (um- pouring rain!)</p>
<p style="text-align: center;">just getting my jacket &amp; gear ready for tomorrow morning!</p>
<p> </p>
<div id="attachment_270" class="wp-caption aligncenter" style="width: 160px"><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2009/03/p3150016.jpg"><img class="size-thumbnail wp-image-270 " title="p3150016" src="http://www.openyourheart-marycaruso.info/wp-content/uploads/2009/03/p3150016-150x150.jpg" alt="Sami &amp; Ally!  This one's for you!" width="150" height="150" /></a><p class="wp-caption-text">Sami &amp; Ally this one&#39;s for you!    I love you guys!</p></div>
<p><span>Well, it’s been a long 24 hours!  I was a nervous wreck that is for sure.  Not really for the bike ride but for the whole anticipation of the trip.  I get nervous just knowing I am flying somewhere.  But then it really is more about fearing more things as we get older.  Sandi and I were just talking about that.  It seems that the more comfortable we get with our lives the more fear we seem to have.  I remember being in college and thinking nothing of driving four hours to see Kevin In Vermont!  So I think that the older we get the more we have to push ourselves.  Think of it as staying out of complacency!   Facing our fears is just away of keeping our minds sharp and our hearts open.  This ride should be nothing to me compared to some of the stuff we have been through!  One of the worst times so far in this journey has been getting us all through Alex’s spinal surgery.  I can remember like it was yesterday when the ax came crashing down on me!  We had to see the ortho surgeon as a yearly routine thing to monitor scoliosis for both the girls. </span></p>
<p><span>Every year for the first six or so years I would be so sick before the appointment.  I hated to see that xray of their spines.  So this one year would be different, I was so much more relaxed and at ease!  It was a crazy appointment.  I ran Alex into xray and then helped weight and measure her then put her in a room.  I went out and got Sam in xray then helped measure her, but when I went to hold her up we fell.  Of course I tried to make light of it but Sam was so embarressed and upset.  She said,  &#8221;mom please just leave me here a minute.”  What else could I do but respect her wishes.  I turned and walked into the exam room, the surgeon was standing in front of Alex’s xray; as I stood in front of him he said, “Her spine has moved to 64 degrees we need to talk about a fusion”.  I remember feeling just like I did the day they gave me the diagnosis of Friedreich’s Ataxia.  I was there but I wasn’t.  My mind somehow coped by leaving my body.  Odd as it seems, you are aware of what is going on but you don’t have any feeling, you take it in and it registers but you are numb.  I wanted to just open the door and run&#8230;&#8230;&#8230;&#8230;..but I didn’t.  I went out, picked Sammy up and we both went into that room together.  Like we always do, face it together&#8230;&#8230;.Like how my parents taught me to handle things.  So for the next months we got ready, as ready as anyone can get for this.  The night before her surgery I laid on the bathroom floor most of the night and vomitted!  It’s true!  With the exception of the phone call to my doctor’s office to tell them that I must be having a heart attack, I was sweaty and sick and my chest was caving in on me.  He’s reply was short and cold, he said of course I was NOT having a heart attack, a stomach bug was hardly going to give me a heart attack!  Boy was he wrong&#8230;..I was having an attack alright&#8230;..a please GOD don’t do this to my beautiful daughter attack.  So I did what I did that night that would help me get through the surgery for Ally.  And I was able to pull myself together for her and for Sam.  She was so brave through it all.  She was a senior in high school and she really handled everything at home.  That was her way of coping.  But we did it we all got through it!  And I got through it like I’ll make it through this journey because of so many people in our lives. Believe me I say it way too often.  We have fun but we are really a very high maintenance family.  I am so grateful to our friends who stick by us&#8230;..and it is mostly the people who read this blog!  So you all know how hard it is sometimes to stick by us!</span></p>
<p><span>I know at times I get tired of myself MYSELF!  But it is so hard to get away from me <img src='http://www.openyourheart-marycaruso.info/wp-includes/images/smilies/icon_smile.gif' alt=':-)' class='wp-smiley' /> !</span></p>
<p><span>So thanks for reading this personal entry&#8230;&#8230;.I think it is important sometimes to know that it isn’t all just a bowl of candy!  But we all go through this stuff and we all find our own ways of getting through&#8230;&#8230;&#8230;Mine is with the strength of so many wonderful people in my life!  So for that I say thanks!</span></p>
<div id="attachment_275" class="wp-caption alignright" style="width: 100px"><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2009/03/p3150022.jpg"><img class="size-thumbnail wp-image-275 " title="p3150022" src="http://www.openyourheart-marycaruso.info/wp-content/uploads/2009/03/p3150022-150x150.jpg" alt="This is a great exercise for meeting people!" width="90" height="90" /></a><p class="wp-caption-text">This is a great exercise for meeting people!</p></div>
<p> </p>
<div id="attachment_272" class="wp-caption alignnone" style="width: 118px"><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2009/03/p3150019.jpg"><img class="size-medium wp-image-272  " title="p3150019" src="http://www.openyourheart-marycaruso.info/wp-content/uploads/2009/03/p3150019-300x225.jpg" alt="thinks this is a great movement! kindness!" width="108" height="81" /></a><p class="wp-caption-text">thinks this is a great movement! kindness!</p></div>
<p> </p>
<p><span>I’ll got to Portland by about midnight (3am Connecticut time)  I have given some hearts out to some GREAT people.  They are for the most part interested in being nice to each other.  Both pilots on my first flight took two <img src='http://www.openyourheart-marycaruso.info/wp-includes/images/smilies/icon_smile.gif' alt=':-)' class='wp-smiley' /> .  I am meeting some very handsome guys for some reason <img src='http://www.openyourheart-marycaruso.info/wp-includes/images/smilies/icon_wink.gif' alt=';-)' class='wp-smiley' /> .</span></p>
<p> </p>
<p style="text-align: center;"><span>One day left till we pedal off!</span></p>
<div id="attachment_273" class="wp-caption aligncenter" style="width: 118px"><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2009/03/p3150021.jpg"><img class="size-medium wp-image-273 " title="p3150021" src="http://www.openyourheart-marycaruso.info/wp-content/uploads/2009/03/p3150021-300x225.jpg" alt="cab driver! great tips on the bike route!" width="108" height="81" /></a><p class="wp-caption-text">cab driver! great tips on the bike route!</p></div>
<p> </p>
<p><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2009/03/p3150023.jpg"><img class="alignleft size-thumbnail wp-image-274" title="p3150023" src="http://www.openyourheart-marycaruso.info/wp-content/uploads/2009/03/p3150023-150x150.jpg" alt="" width="90" height="90" /></a></p>
<p> </p>
<p><span>Until then- oh yeah!  snowing in Seattle right now!</span></p>
<p><span>In Peace and Love&#8230;&#8230;&#8230;</span></p>
<p><span>Always,</span></p>
<p><span>Meir</span></p>
<p><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/peacesign.jpg"><img class="alignnone size-thumbnail wp-image-36" title="peacesign" src="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/peacesign-150x150.jpg" alt="" width="54" height="54" /></a></p>
<p><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/peacesign.jpg"> </a></p>
<div class="mceTemp mceIEcenter"><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/peacesign.jpg"></a>
<dl id="attachment_271" class="wp-caption aligncenter" style="width: 160px;"><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/peacesign.jpg"></a>
<dt class="wp-caption-dt"><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2009/03/p3150018.jpg"><img class="size-thumbnail wp-image-271" title="p3150018" src="http://www.openyourheart-marycaruso.info/wp-content/uploads/2009/03/p3150018-150x150.jpg" alt="shy but was forced to talk to me, waiting for the subway!  loved the heart!" width="150" height="150" /></a></dt>
<dd class="wp-caption-dd">shy but was forced to talk to me, waiting for the subway!  loved the heart!</dd>
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		<title>say it isn&#8217;t so!</title>
		<link>http://www.openyourheart-marycaruso.info/2008/12/30/say-it-isnt-so/</link>
		<comments>http://www.openyourheart-marycaruso.info/2008/12/30/say-it-isnt-so/#comments</comments>
		<pubDate>Tue, 30 Dec 2008 19:56:18 +0000</pubDate>
		<dc:creator>Mary</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[family]]></category>
		<category><![CDATA[friends]]></category>
		<category><![CDATA[obstacles]]></category>
		<category><![CDATA[persevere]]></category>

		<guid isPermaLink="false">http://www.openyourheart-marycaruso.info/?p=80</guid>
		<description><![CDATA[My friends Jack and Laura are true blue friends.  They support me in everything I do; whether or not they agree with what crazy thing I am doing at the time.  So back in September when I told them I was doing this bike ride, they never hesitated!  Jack took their hybrid bike and brought [...]]]></description>
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<p>My friends Jack and Laura are true blue friends.  They support me in everything I do; whether or not they agree with what crazy thing I am doing at the time.  So back in September when I told them I was doing this bike ride, they never hesitated!  Jack took their hybrid bike and brought it right into Zanes.  He had it tuned up, put brand new tires on it and a new seat too!  Jack said that would turn out to be my most important part of the bike-had to have a good seat.  He so proudly brought it to me when it was done.  We spent time together-Jack showing me how to get on and off of it properly-yes it is true I did not know how to do that!  He showed me how to use the gears and just how to stay on the thing without falling off.  Mostly he yelled at me just because that is what he does <img src='http://www.openyourheart-marycaruso.info/wp-includes/images/smilies/icon_smile.gif' alt=':-)' class='wp-smiley' /> !  But that is part of who he is and I love him for who he is! Jack and Laura are the best at listening to me cry and complain and getting me through life&#8217;s bumps in the road. Jack will yell at me and I will stop and think about what great advice he gives me and I am back on track.  So my bike wasn&#8217;t just a bike to train on, it was a sentimental memory- a personal piece of emotional support from two people who genuinely love me and accept me for all of my quirkiness.  </p>
<p style="text-align: center;"><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/100_3553.jpg"><img class="size-medium wp-image-87 aligncenter" title="100_3553" src="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/100_3553-256x300.jpg" alt="" width="125" height="147" /></a></p>
<p>So tonight I got all dressed for a great but cold and challenging ride-I put on my great new bike shoes that Norm helped me pick out, the under armour Jackie bought me for Christmas and Alex&#8217;s warm scarf that she insisted I put on. I made my way to the garage&#8230;.. opened the door and wait&#8230;&#8230;.where the heck did I put my bike?  It was here just a day ago!  Then I thought; Ben&#8230;&#8230;.he has been working so diligently on the house&#8230;.he didn&#8217;t like where I put it so he moved it somewhere, of course!  I dug to the back of the garage but nope!  OR someone picked it up to put some kind of neat accessory on it as a surprise! I called everyone, no one did that either!  So the reality has set in; I am sad to say no one moved the bike, well at least no one that we will ever know about because someone actually came to my house, went into my garage and stole the bike!</p>
<p> But then this ride and this blog are about over coming obstacles so I know I will get past this and be able to move ahead. So being robbed kind of fits into the whole theme of picking up where you left off and moving on in a positive way.  It&#8217;s just another challenge associated with the ride, besides no one said it was going to be easy!  Really this isn&#8217;t the worst thing that I have been through.  It is however one of the most personally offensive acts I have been through.  I can not imagine stealing something from anyone.  I have a hard time stopping when I see something really great on the side of the road.  I am always compelled to knock on the door first&#8230;&#8230;JUST in case the people really didn&#8217;t mean to put it on the curb.  The bike was a symbol that Jack and Laura knew I could and would do this and now it&#8217;s gone.  The bike was a reminder of their immense generosity.  I feel worse for Jack and Laura, it was not a cheap bike and they trusted me with it, I really should have been more careful.  But I will replace the bike and they know I will.  And the sentimental feelings can&#8217;t be taken away-no one can rob me of that!  Because those are the important parts of life-the wonderful memories!  I will always remember Jack yelling NO! You don&#8217;t just jump off the thing at that speed, you slowly lower one foot as you stop.  NOW DO IT AGAIN! <img src='http://www.openyourheart-marycaruso.info/wp-includes/images/smilies/icon_smile.gif' alt=':-)' class='wp-smiley' /> </p>
<p>So if anyone happens to see a really short person (it was a pretty small bike to fit me right) on a great looking Trek hybrid bike or a really big person trying to ride a really small bike- would you please ask them if it is Jacks bike that was in my garage? More importantly you better tell them Jack had better NOT find out who did this!   Explain that this is a challenge for me and I really need that bike!!  Who would have thought? I keep saying to myself, &#8220;say it isn&#8217;t so&#8221;&#8230;..but unfortunately it is! </p>
<p>Well, as my father used to say&#8230;&#8230;.. keep your chin up, there are better days ahead.</p>
<p>In peace and a world without theft</p>
<p>Always</p>
<p>Mary</p>
<p> </p>
<p><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/peacesign.jpg"><img class="alignnone size-medium wp-image-36" title="peacesign" src="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/peacesign.jpg" alt="" width="50" height="50" /></a></p>
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		<title>Family roots begin when two people fall in love</title>
		<link>http://www.openyourheart-marycaruso.info/2008/12/16/family-roots-begin-when-two-people-fall-in-love/</link>
		<comments>http://www.openyourheart-marycaruso.info/2008/12/16/family-roots-begin-when-two-people-fall-in-love/#comments</comments>
		<pubDate>Tue, 16 Dec 2008 18:07:11 +0000</pubDate>
		<dc:creator>Mary</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[family]]></category>
		<category><![CDATA[kindness]]></category>
		<category><![CDATA[love]]></category>
		<category><![CDATA[roots]]></category>

		<guid isPermaLink="false">http://www.openyourheart-marycaruso.info/?p=10</guid>
		<description><![CDATA[  I guess before I can really express my true convictions I have to write just a bit about how I became so resilient.  Especially this time of year, I believe we all look back upon our childhood with so many emotions.  I truly had the most amazing parents anyone can imagine.   My dad [...]]]></description>
			<content:encoded><![CDATA[<p><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/049.jpg"></a><span style="color: #0000ee; text-decoration: underline;"><br />
</span></p>
<p><a href="http://www.zshare.net/download/53045324882825eb/"></a><img class="size-medium wp-image-30 alignleft" title="049" src="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/049-300x208.jpg" alt="" width="168" height="117" /><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/scannedimage004.jpg"><img class="size-medium wp-image-27 alignright" title="scannedimage004" src="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/scannedimage004-300x193.jpg" alt="" width="146" height="114" /></a>  I guess before I can really express my true convictions I have to write just a bit about how I became so resilient.  Especially this time of year, I believe we all look back upon our childhood with so many emotions.  I truly had the most amazing parents anyone can imagine.  </p>
<p>My dad was a business man who had a combined personality of intelligence, wit and compassion.  Even after his passing in 2001 I still have people coming up to me to tell me these wonderful stories about how he helped someone out when they were having difficult times.  He owned an oil company in my hometown of Rocky Hill.  He really was the pillar of the community involved in so many civic organizations.  He was so kind and generous.  We butted heads most of our lives but had a deep connection because we were so much alike.  I still remember the day he was so mad at me I thought his head was going to blow off.  But he never raised a hand to any of us instead he banged on the side of the house so hard I saw the shingles start to fall away!  AHHHH great memories.  My most precious memory is that of taking a trip alone with him in 1994.  I had never done such a thing and we had a blast.  We went to Florida together and I had the wonderful opportunity for the first time to see how much we really were alike.  We talked to everyone and made friends everywhere! Then when we found ourselves snowed in at Newark Airport we made people laugh-and I mean people who were pretty aggravated at the situation.  We were able to turn the mood around and laugh and joke with people in the airport.  I will always cherish that trip as one of the most valuable lessons in my life!<a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/gram-al1.jpg"><img class="size-medium wp-image-32 alignleft" title="gram-al1" src="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/gram-al1.jpg" alt="" width="155" height="113" /></a></p>
<p>My mom on the other hand was a bit more quiet and reserved.  She was the apitamy of what a mom should be.  Beautiful in spirit and so humble.  Almost every day when I walked in from school her baking bowls and wooden spoons would be out and ready to bake some great new recipe.  She was the wisest woman and had the most insightful advice for many.  We lost her this past June and this season is turning out to be the most challenging for me so far in my life.  My sisters Marcia and Micki and I have still not moved her bathrobe from the hook in the bathroom, somehow it just doesn&#8217;t seem final until that is done. Mom had a heart of gold and was the most non judgemental person in the world-truly and genuinely!  She attracted people to her kitchen table her whole life-she was the best cook and was always such a delightful person to sit and talk to.  When I was a child I remember on May day she said to me, &#8220;let&#8217;s go pick all the may flowers in the back and we will bundle them and surprise people by leaving them at their front door&#8221;.  It was such an exciting adventure, and such a simple pleasure.  We had a ball running to our neighbors doors and leaving the anonymos beautifully wrapped bundles of flowers.  Thinking back it was the start of my desire to do acts of kindness and my mom introduced it to me at such a young age.</p>
<p>Together they worked as a team raising my sisters and me in the most wonderful home I could imagine. Marcia, Micki and I recently took time away from the busy season to sit and enjoy lunch together.  It was so wonderful!  We talked about how much our parents cherished family and vowed to see each other at least every other month.  I ask you this week to think about your roots, your parents!  The people who made you who you are today.  Let go of any of the bad stuff (cause there is always bad stuff with the good stuff) and really think about the good stuff. Whether they are here in body or in spirit hold on to that one great memory and place it in your heart!  If you have children try to talk to them about the good stuff that was brought to you and what you bring to them.  </p>
<p>Open your hearts today and enjoy.  May you find love and peace in this day. Oh yes and do something really kind, either to someone you know or maybe someone you come upon- YES even a stranger!  And even if it is just a smile and a hello.  Then comment on it- on how you felt to put yourself out there. Try it!</p>
<p>With Love and Peace &amp; a Merry Christmas to all!</p>
<div id="attachment_75" class="wp-caption alignleft" style="width: 220px"><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/christmas08.jpg"><img class="size-medium wp-image-75 " title="christmas08" src="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/christmas08-300x222.jpg" alt="A Wonderful Christmas Day 08!" width="210" height="155" /></a><p class="wp-caption-text">A Wonderful Christmas Day 08!</p></div>
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<p>Always</p>
<p> Mary</p>
<p><a href="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/peacesign.jpg"><img class="alignnone size-medium wp-image-36" title="peacesign" src="http://www.openyourheart-marycaruso.info/wp-content/uploads/2008/12/peacesign.jpg" alt="" width="44" height="43" /></a></p>
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