tag:blogger.com,1999:blog-52363509693039539332024-02-19T11:27:42.569-05:00Ten Squares, Three SquigglesSharing the road less traveledJessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.comBlogger196125tag:blogger.com,1999:blog-5236350969303953933.post-73489288610313608762015-11-04T10:21:00.004-05:002015-11-04T10:21:59.904-05:00Own That Ride<ol class="_2t4u clearfix" data-pnref="story" data-referrer="pagelet_timeline_recent_ocm" id="u_jsonp_21_f_story"><div class="_5pcb _4b0l">
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Caden has a no-nonsense speech therapist. She is not fooled by his charming attempts to distract her and realizing the importance of her techniques being repeated often and correctly at home, she includes me in each session, provided I am not a distraction. She is not afraid to tell me when to assist - and when not to ("Now mom, he's never going to do it on his own if you always prompt him". Doh!) Yesterday was the first day I thought she might actually kick me out of the roo<span class="text_exposed_show">m. I had one of those giggle fits that just won't leave you alone. I laughed until I cried and just when I thought it was out of my system, boom! The laughter snuck out again. I tried to stifle it but was nearly convulsing from the effort. It was almost painful.</span></div>
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Caden was doing his usual delay tactics to keep from doing the work: clearing his throat, shuffling and reshuffling his speech cards, readjusting his chair. This therapist has other-worldly patience and waits him out while I am at my wit's end swallowing my maternal need to tell him to cut it out. He finally starts vocalizing his word list but is fidgeting in his chair, even rocking it up onto the back legs. Suddenly his eyes widen as he starts to lose balance. He tries to recover by throwing his torso forward but it's too late. Realizing he's going over backwards, he gleefully throws both arms up in the air and exclaims, "Wheeeee!" The last things I saw were his feet rising straight up in the air from behind the table before he hit the ground. He quickly got up and righted his chair. He was clearly okay but that image of him going down with arms and legs out, saying "Wheee!" like it was some amusement park ride killed me. I didn't want to look like a bad mother and I truly tried to stop laughing but it was useless. It was such a classic Caden move. Knowing he was going down, he figured he might as well go big and enjoy the ride! I'm still chuckling today though I'm worried I may be banned from the next speech session. And if anyone is having a tough day, just take a page from Caden's book: own that ride and say wheee!</div>
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Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-49369139360748334572015-10-30T11:03:00.001-04:002015-10-30T11:03:06.510-04:00By the light of the moon<ol class="_2t4u clearfix" data-pnref="story" data-referrer="pagelet_timeline_recent_ocm" id="u_jsonp_11_f_story"><div class="_5pcb _4b0l">
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I remember worrying about Caden's future after getting his prenatal diagnosis of Down syndrome. There were a lot of unknowns with his multiple health issues and I wasn't very familiar with life with an intellectual disability. I worried that our fast-paced world might leave my son behind and that he might miss out on a lot of experiences.<br />
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This morning well before dawn, I was startled awake by Caden yelling from his bedroom, "Mommy! Daddy! Come here, quick!" In a panic, I raced down the hallway to find him standing in the dark at his window.</div>
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"What's wrong?" I asked as I moved forward to make sure he wasn't injured, bleeding, vomiting, or suffering from any other scary nighttime malady. </div>
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"The moon!" he gushed, pointing outside. I took a peek and indeed, the moon was stunning. Nearly full and glowing like a huge spotlight in the sky, it illuminated our entire backyard. Though the scene was a daily familiarity, the bright darkness made the landscape appear foreign. It reminded me of old black and white negatives with the colors reversed so that images must be studied for a bit before they are recognized. </div>
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While I was sleeping to recharge for another busy day, Caden was the one catching an incredibly beautiful moment. And he wanted to share the world he was seeing with his mommy and daddy. Had I been awake first, I most certainly would not have given the moon its proper due if I had noticed it at all. Soon the sun would rise and our surroundings would return to normal. I stood at the window cherishing the fleeting vision.</div>
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I used to worry that Caden would miss out on a lot by not being able to keep up in a fast-paced world. He reminds me that sometimes that fast-paced world causes us to miss out on a lot. Thank you, son, for waking me up to the moon.</div>
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Happy Down Syndrome Awareness Month!</div>
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Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-30039202384184768592015-10-02T11:11:00.000-04:002015-10-02T11:11:09.465-04:00Celebrate the gap!October is Down Syndrome Awareness Month! Three cheers for that third 21st chromosome! <br />
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Did you know that certain physical characteristics are more common with Down syndrome? These features include almond shaped eyes that slant up rather than down, a flattened facial profile, shorter height, low muscle tone and excessive flexibility, a simian crease ( a single crease across the palm of the hand), and small ears. An individual may have most or just a few of these traits. <br />
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Another common feature is called sandal gap which is an increased space between the big toe and the rest of the toes. Medically, it may be considered a deformity but functionally, it is a splash pad jackpot. Caden can funnel water through that gap and hose people down like nobody's business. And by "people", I mean me. He's my little terror in water parks!<br />
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Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-69304779245478847912015-09-29T11:38:00.000-04:002015-09-29T11:38:51.819-04:00Kicking Down WallsI could tell he was uncertain, maybe nervous, choosing his words carefully and probably hoping not to offend me. He presented a list of reasons that his proposition would be beneficial to all involved, himself included. <br />
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"Do you think Caden would be interested in being the assistant team manager of our girls soccer team?" Coach J asked. I could hardly reply. Was this really happening?<br />
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Caden started playing soccer with a community organization called Soccer Shots when he was 5. Before signing him up, I remember anxiously emailing the founder, Coach J, to see if he thought Caden might be able to participate successfully. I wanted it to be a positive experience for everyone and I wanted him to be safe. Caden didn't walk until he was 3 so even at the age of 5, he was still mastering running and kicking. I wasn't sure if this was a highly competitive group or if the coach had experience with any children with special needs. His reply was enthusiastically supportive: yes, he would love for Caden to join Soccer Shots. Whewwwwww. The heaviness of bated breath while waiting to see how your child might be received in new environments is agonizing so the exhale upon reassurance is profound.<br />
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Caden loved Soccer Shots and participated for a couple of years until he aged out. It was primarily for preschoolers through kindergartners but Coach J was kind enough to let my boy continue to play an extra year. Eventually we moved on to TOPSoccer, designed specifically for children with disabilities. Caden continues to play with this group and very much enjoys it. Occasionally we'd run into Coach J at random events and he was always very interested to catch up with Caden's progress and proud to know he was still playing soccer. <br />
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And then out of the blue, I recently received a phone call from Coach J saying he still thought about Caden and sharing how much he learned from him. He was currently coaching his daughter's travel soccer team, the Hershey Force, and was interested in finding a way for Caden to be involved. He wanted to make it an inclusive experience and he felt it would be a great opportunity for Caden to grow, as well as the players. He was open and upfront, asking about proper terminology when speaking about Caden and how to handle any questions the girls might have. He had thought out some possible duties and wanted feedback on them. He even had a title ready: assistant team manager. <br />
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I hope I spoke coherently. It was such an unexpected moment of elation. Caden is involved in many inclusive activities but in nearly all of them from school to TOPSoccer, he has an aide or a buddy at the ready. He is the one always needing help. But this was a chance for him to assist others and to have responsibilities to make him proud. <br />
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And as his mother, the best part to me was that it was an opportunity <em>I did not initiate</em>. I wasn't the one making the call asking for out of the box thinking for ways to include my boy. I wasn't the one making the list of possible tasks or offering ways to make it successful. It was all someone else's doing. The tables had been turned. I loved it and I barely knew how to properly respond. I wanted to dance. I wanted to cry. I wanted to thank Coach J. I especially wanted him to know how incredibly meaningful this was to us. It makes my heart explode to know that someone not in our immediate circle thought to himself, "Hmm, I wonder what opportunities are available for Caden? I'm gonna call and ask and I'm going to create something for him". This is inclusion. This is community.<br />
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Is Caden interested in being assistant team manager. Pick-an-expletive yeah! He wouldn't miss it! <br />
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The first home game for Caden was this weekend. He beamed - no - he BEAMED standing next to Coach J during the pre-game preparations, handing out player cards, organizing water bottles and helping with warm-ups. During the game, he sat next to the bench with a clipboard so he could keep track of which players scored goals. Afterwards he helped clean up, high fived the other team, and then joined his team as they ran across the field to thank the parents. When he spotted me and The Tank, his grin took up so much of his face that his eyes disappeared. Other parents clapped for Caden instead of their daughters. "Good game, Caden!" "Great job, Caden!" I'm sure there's no crying in soccer but the appreciation cannot be contained when you have this kind of community helping to kick down walls for your child. They are indeed the Hershey Force.<br />
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Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-64387465641948633552015-09-08T12:29:00.003-04:002015-09-29T11:41:30.060-04:00Squeal Together<div class="separator" style="clear: both; text-align: center;">
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"Why is he acting that way?" asked the 8 year old boy sitting in front of me on the swings. He was speaking of Caden, seated behind me. We had just finished one turn on the ride and since there was no line, the ride operator had offered us all another go. This young boy could hear Caden squealing with joy while Frank and I couldn't stop laughing at his glee during that first ride. The boy had actually moved seats to be closer to us after that, explaining, "Whenever I see such<span class="text_exposed_show"> happy faces, I can't resist!" But now he was getting a better look at Caden and was curious. I looked over my shoulder at my son and saw nothing but excitement.</span><br />
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"Because he's happy," I answered, thinking it should be pretty obvious. The little boy watched and pondered Caden some more as he babbled away in his unclear speech and made nonsensical sounds of delight. <br />
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"Does he have braces?" he guessed.<br />
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"No braces - yet," I replied ."But he did have ten teeth pulled earlier this year. Are you seeing the gaps in his smile?"<br />
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"No. I thought maybe that's why he couldn't talk. Because he has braces."<br />
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I typically explain to children that Caden has low muscle tone so speech is difficult for him but he can use sign language and his iPad to communicate. This is usually pretty interesting to other kids, even giving my boy a cool factor. But I was so humored by this boy's idea that people who get braces can't talk that I couldn't go into teachable moment mode. No matter. The new friend had moved on and was asking us if we were going to ride again, even though we were still waiting for our current turn to begin. Once we got going, he echoed Caden's squeals and commented on how much more fun the ride was while doing that. He spent the majority of the ride nearly turned backwards to watch Caden and share in our happiness.<br />
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To me, this is life with a disability in a nutshell. Other people notice differences. It's only human. Sometimes they stare, sometimes they ask questions and sometimes they do both. Part of sharing Caden with the world means embracing this natural reaction to help others understand. But then we move on. We focus on what we share in common and how we are alike. We learn from the differences but we revel in our similarities. Then it's easy to be in a happy place and squeal together.</div>
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Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-700870505433171302015-08-07T12:14:00.000-04:002015-08-07T12:14:02.234-04:00First guest blog post!This is exciting news! I had the honor to write a guest blog post for Children's Miracle Network Hospitals regarding the Champions tour. My first guest blog post! It is still very difficult for me to put into words what this experience was like and what it meant. My standard response, even now, is to well up. I'm so glad we get to do Take Two in February to reunite our "family" and to give me another opportunity to fully take it in.<br />
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<a href="http://blog.childrensmiraclenetworkhospitals.org/2015/08/from-the-mouth-of-a-miracle-mom.html">http://blog.childrensmiraclenetworkhospitals.org/2015/08/from-the-mouth-of-a-miracle-mom.html</a><br />
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Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-80385502206668376542015-06-16T20:29:00.001-04:002015-06-16T20:36:42.244-04:00Though they be but little......they are mighty CHAMPIONS!<br />
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Here are some of the many inspiring children and their families that we met during our time in Atlanta and DC. These are undoubtedly some of the finest human beings you could ever meet in a lifetime and to be in their collective presence was deeply humbling. To learn more about their medical journeys, please visit the <a href="http://childrensmiraclenetworkhospitals.org/About/Champions/2015/PA">Children's Miracle Network Hospitals website</a><span style="color: red;"> </span>and read about the Champion from each state. I adore each of these children and know you will too. I hope Caden has lifelong friends in this exceptional group.<br />
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<br />Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-64293916461590263622015-06-12T11:00:00.000-04:002015-06-12T15:35:05.074-04:00Champion Tour Day Five: Washington, DCWe were invited to participate in a media satellite tour this morning with Miss America at the National Press Club so we had to be up early AND functioning for interviews. Tough task but nothing a lot of caffeine couldn't remedy.<br />
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It was so fascinating to be in that building and see pictures on the walls of famous people who had been in the exact same location over the years. It is also interesting to see how satellite interviews are actually performed, not being able to see the person speaking to you while hearing them in your earpiece and still smiling into the camera. Very other worldly. That Miss America though! She sat through each interview (we're talking hours of TV and radio interviews from all over the country) and managed to be beautiful, eloquent and fresh for each one. I really don't know how she pulled it off.<br />
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We had two live TV interviews and one pretaped radio interview. Caden decided to get more energetic with each one. He also saw some of the teenaged Champions doing their interviews without their parents so after our first interview, he was already asking me to stay in the waiting area. It wasn't so much that he wanted to speak independently to the media but that he was jealous the other kids were getting alone time with Miss America - his "princess"! When we were finished with our interviews and ready to leave we said our goodbyes to the remaining Champion families. Caden then realized he didn't have a proper goodbye with Miss America but she was still taping interviews. He tried to storm the studio and was heartbroken that we wouldn't let him in. I didn't have the heart to tell him that there will be a different Miss America when we travel to Disney in February. Kira stole his little heart! Click below to watch one of the TV interviews with a local channel from our area, WGAL:<br />
<a href="http://www.wgal.com/news/childrens-miracle-network-meet-caden-capitani/33527374">TV interview with WGAL</a><br />
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The other families and Champions were absolutely wonderful to watch during their interviews. We were able to view their tapings from a waiting area. Everyone was so supportive of each other and when someone would return from their interview back to the rest of us, they were greeted with applause, high fives, and praise. I have a hard time putting into words the awe and bond I feel for all of them. It is a unique group to have this shared experience with our children though our stories are all so different. It was a privilege to be in such company all week. I learned so much from their willingness to share their stories and open hearts. It brings tears to my eyes thinking about how touching this whole week was. February can't come soon enough!<br />
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We had a driver service deliver us back to Pennsylvania. Caden started out excited to be headed home to his Wii U games but then quickly crashed. He gave it everything he had these past few days! Is he dreaming about this over-the-top week he just had or the one coming up in Disney? Or Miss America? All we know for sure is that his Chico's Miracle Bear is also comfy under the head.<br />
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Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-24098444328739740692015-06-12T10:14:00.004-04:002015-06-12T10:14:55.418-04:00Champion Tour Day Four: Washington, DC<div class="separator" style="clear: both; text-align: center;">
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Hmm, we have some free time today. What should we do after admiring the Washington Monument from our hotel window? Oh yes, we must do a photo shoot first! Cheeeeeese!</div>
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And then head to the National Air and Space Museum. Caden has recently been fascinated with the planets and outer space so this was a must-do. We never made it to the "air" side of the building and spent all of our time pretending to be astronauts on the "space" side. </div>
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That evening the Champions were treated to an amazing red carpet private movie screening of Rio 2. The entrance to the movie area was set up like a Hollywood premiere draped in fabric and bordered by velvet rope. Inside there were concession areas, fancy seats and an area for kids to lay down and watch the movie with blankets and pillows. And lots of stuffed animals! I could hardly believe how much effort went into making this the best movie night ever. </div>
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Yep, that's Caden up front turning around to check on mommy and daddy. For most, this was their last event of the Champions tour so there were many goodbyes. We were invited with a few other families to participate in a satellite media tour the next morning so fortunately we didn't have to say goodbye to everyone just yet. I can't believe how close we've all become so quickly. There were lots of shared happy tears during the week and lots of sad tears as we departed each other's company. At least for now, it's merely an "until next time" when we will all be reunited in Florida in February 2016. We were honored to become friends with such incredible families and will truly miss them.</div>
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Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-68041319599307489812015-06-11T11:05:00.005-04:002015-06-11T11:05:46.833-04:00Champion Tour Day Three: Washington, DCHere we are halfway through the trip and I still can't grasp that it is really happening! Being around these amazing Champion children is so inspirational. They are full of light and life which makes it hard to reconcile that happy image with their medical histories, knowing the dark and emotional journeys from which they've traveled. It's also an unique experience to have this immediate bonding with the families because no matter the medical journey, whether it was due to a congenital or acquired condition, an accident or an illness, we've shared those feelings of helplessness and the instant change in your life perspective when your child's health or even very life is on the line. No other roomful of strangers could connect like this. It certainly makes it difficult for me to keep my eyes dry this week!<br />
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So today we stormed Capitol Hill and took our message of awareness for Children's Miracle Network Hospitals directly to the decision makers of our country.<br />
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Caden is easy to spot in the group photo of all the state Champions. He's the one with the celebratory fist in the air. Because of course.<br />
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Caden had a lot of hugs for Miss America the past couple days. He even made her Instagram account where she declared him the best hug giver in all the land. She oughta know!<br />
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We then attended a luncheon with an incredible view over the DC skyline hosted by Senator Orrin Hatch. We were hoping for a tour of the White House but unfortunately it was not possible. And even if we had been there, the visit would've been canceled or interrupted because it was a crazy day for security with multiple bomb threats and evacuations! Instead we stayed at the Capitol Building and visited the offices of our Pennsylvania Senators. They were tied up in meetings but it was fun to make an appearance and sign the guest register. When they review that, they will feel sorry to have missed a chance to meet "Caden Hulk"!<br />
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There was one moment of panic today. I wanted to get pictures of Caden on the steps of the Capitol so I asked him to go up a few while I crossed the plaza area to get the whole building in the shot. Suddenly a security officer of some sort holding a RIFLE stepped onto the terrace over Caden. And a bike cop rolled up to Caden on the steps and handed him a paper. What was happening? I dashed back to my boy thinking he was getting arrested! Maybe given the bomb threats, we weren't supposed to be standing on the steps. But it turned out that the bike cop was making Caden a junior officer and put a sticker badge on him. The armed dude was keeping an eye on us, however. You can see him in the background here. That wasn't unsettling at all. .<br />
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We finished the day at the White House. Even if we couldn't get inside, we at least wanted to see it. However, security was still on high alert and we were turned away from the area several times before we finally made it. Caden wanted to climb the fence. I almost let him.<br />
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The Pennsylvania Champion was proud to represent on Pennsylvania Avenue! And taking his ambassador role seriously, Caden made sure to say hello to everyone we passed on the street which was a lot of people from all over the world. But he kept his spirits high and put smiles on a lot of faces. Spreading awareness while spreading joy. A perfect job for Caden!Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-64561717357760002152015-06-10T08:31:00.004-04:002015-06-10T08:31:57.100-04:00Champion Tour: Day TwoWhew! Is there really another day like yesterday happening? Today we were treated to a luncheon by Delta at their new Flight Museum in Atlanta.<br />
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Our arrival was given the red carpet treatment. The Delta employees clapped and cheered, making the kids feel like celebrities. The faces of the Champions as they entered was priceless. Here we go again with the momma waterworks.<br />
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Each Champion child had their own banner signed by all the Delta employees with uplifting and encouraging messages and then the kids spent time signing the banners too. Of course, Caden continued with his signature "Caden Hulk" signature. </div>
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Our buffet lunch was served under a real plane which Caden found very amazing! Then the Champions mingled with the pilots, Miss America and Zendaya. I can't believe both of those ladies devoted so much of their time to the Champion tour. Outstanding supporters! And it also highlights the belief that beauty comes from within. As stunning as Zendaya and Miss America are in outward appearance, it can't compete with their inner beauty. </div>
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And as if Delta had not been over the top already, they then flew all the Champions and families to Washington, DC via CHARTER FLIGHT! Talk about a once in a lifetime experience! We didn't even have to go through the airport at all and TSA came to our luncheon to do the security screenings. We rode buses right onto the tarmac and walked up the steps to board our planes like true rock stars! The plane was decorated inside with the kids' photos and party decor. Delta went all out! We ate dinner on the plane and before we knew it, we landed in DC. We exited in the same rock star fashion and walked right off the plane and onto our buses. Look out DC! The Champions are in town!</div>
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This is what you call owning it. LIKE A BOSS!</div>
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Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-65838285776044983312015-06-09T07:42:00.002-04:002015-06-09T07:42:55.952-04:00Champion Tour Day One: AtlantaWhat a day and what a start for Caden's Champion tour with Children's Miracle Network Hospitals! We flew out of the Harrisburg airport in the morning.<br />
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Caden was very excited to take his first trip on a plane. He was even lucky enough to invited into the cockpit to meet the captain.<br />
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He loved the takeoff but even more, he loved flying over the clouds. He wanted to keep going up to outer space but Daddy said, "Not today."<br />
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Despite my concerns that he might have ear or breathing problems with the pressurized air, Caden did great! After exiting the plane, we were greeted by a big welcome banner and Caden got very excited each time he spotted a Champions sign letting us know we were headed in the right direction.<br />
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All of the CMNH staff were on top of everything, making sure we found our luggage, the train, the hotel and had snacks. I can't imagine the logistics involved in planning an event like this with families from all over thg country and working with the various medical needs of the children. It's mind-numbing to think of the coordination and attention to detail required but they pulled it off! Frank and Caden managed to get some time in the hotel pool.<br />
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Tonight we had a welcome dinner followed by an ice cream bar. None other than the CEO of CMNH John Lauck sat with us to enjoy the ice cream and we were grateful for the time to get to know him.<br />
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I was also excited to congratulate him on recently receiving an Ernst and Young<br />
Entrepreneur Award. How cool for the work of a non-profit to be considered for such an honor! We were then joined by Vice President Roger Cook who started the Champions program. What a treat it was to learn about its history.<br />
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Did I mention that the centerpieces were fish bowls? Caden really wanted to take our fish to the pool but he settled for swapping fish faces.<br />
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And then Zendaya casually strolls in and was so kind and nice. That's right. Zendaya AND an ice cream bar. Whoa.<br />
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Many of the kids then ran around swapping autographs in the Champions bio book. Caden especially liked meeting all these new friends and their siblings. Of course, he signed all their books "Caden Hulk". This was the MOST amazing thing to witness. All these children who've battled many illnesses, survived many accidents and defied the odds immediately bonding and supporting each other. The spirit in the room was intense. And they demonstrated the story behind the naming of the Champions program which Roger shared with me. As the CMNH team sat around thinking of names for this new program and how it should operate, someone mentioned visiting DC and trying to get a White House tour kids. Someone else said why shouldn't they get to meet the President? All these championship sports teams get to meet him and these kids are bigger champions than these athletes. And so it became the Champion program!<br />
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On to Day Two!<br />
<br />Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-47089073874599107492015-06-05T09:43:00.003-04:002015-06-05T12:36:01.680-04:00The Hulk Goes to WashingtonI mentioned in the previous blog post that there was something special about Caden's blue shirt and that I couldn't wait to share the reason why we needed it. So here it is. He needed it for this photo shoot:<br />
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That's right! Caden was selected to be the 2015-2016 Children's Miracle Network Champion for the state of Pennsylvania! That means we will work hard to spread awareness for CMNH and also to represent our beloved Penn State Hershey Children's Hospital and local community. We will also have the opportunity to travel with all the other state champions to Washington, DC next week and to Orlando in February 2016. It is an unbelievable honor and will be the most amazing year of my son's life so far. While in DC we will visit the White House and hope to meet the President or First Lady if their schedules allow. Which absolutely stuns me because where we started with this child and where we are now don't seem compatible.<br />
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My mind flashes back to having just received the prenatal diagnosis of Down syndrome and various doctors warning us of the future likelihood of heart issues, GI complications, leukemia, thyroid disorders, a spinal condition called AAI, etc that occur more often with Trisomy 21. Of course I understood their duty to inform and educate me but essentially all I heard was, "There's an 80% chance of this bad thing happening and a 60% risk of this one plus a 40% likelihood of that <em>really</em> bad one." Maybe they took it for granted that as parents we intuitively knew this but no one accurately predicted, "There's a 100% chance of unconditional love and a 100% risk of a new attitude about life plus a 100% likelihood that this child will be the best thing that ever happened to you." And most DEFINITELY, no one dared to say anything as crazy as, "There's a 100% certainty that this child will take you to the White House." What?!?! How can this be the same child that seemed to have nothing but negative outcomes predicted??<br />
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I have a feeling I'll be a hot mess during this trip. I need to pack more tissues. And waterproof mascara.<br />
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Finally, CMN made a beautiful video about Caden 3 years ago and they've updated it to show what he's been up to lately. They did a great job of capturing his personality. Watch it below:<br />
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<a href="https://www.youtube.com/watch?v=brpMee-N-tY">https://www.youtube.com/watch?v=brpMee-N-tY</a><br />
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And now to pack for The Hulk's big adventure!Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-51413916602347726022015-03-24T10:50:00.000-04:002015-03-24T11:07:07.682-04:00Full CircleLast week Caden and I had an amazing opportunity at a Children's Miracle Network Hospitals event held for Walmart to honor a Walmart associate who inspired me. Here was my original description of meeting this associate for the first time a month ago:<br />
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<em>I went shopping this weekend for a short sleeved polo shirt for Caden to wear to an upcoming function. Not an easy find in winter and I made it more difficult by wanting a specific shade of blue, with no labels or logos. Knowing I would probably need to make several stops, I left Caden at home with Frank. Eventually I found myself at WalMart and discovered a promising but extremely messy table of spring clothing. Time to dig in. </em><br />
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<em> Next to me was an employee trying to fold and <span class="text_exposed_show">sort a cartful of mismatched items. She was flanked on either side by a pair of women shopping together and speaking over the employee as if she was invisible. One of these women bumped the employee's cart. Though it wasn't her fault, the worker apologized and moved her cart back as much as possible. She then offered her assistance in finding whatever they were looking for but the shopper snapped that she was fine and would "find it myself". Then this shopper met my gaze and rolled her eyes in that way that says "Can you believe what I'm putting up with here?" and that begs for a return nod of sympathy. I thought she was being a little rude so I simply shrugged my shoulders and went back to my shirt search. The pair of shoppers moved on and the employee now noticed me and asked if she could help me in any way. "I'm looking for a blue shirt for my son," I said as I turned to face her. </span></em><br />
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<em> And only then did I realize that this young worker had Down syndrome. She immediately reached into the mound before me and pulled out not one, but two shirts in different shades of blue and both in the right size, which was some kind of impressive. It was one of those serendipitous moments that seem to happen with this extra chromosome that find me fully and helplessly cognizant that it would happen no other way WHILE it is happening. Of course this particular employee would find the perfect shirt. Of course.</em><br />
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<em> "Thank you," I said, "You're very good at your job."</em><br />
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<em> "I love my job," she replied, "I love to help people. That's why I'm good at it. Customers are always number one to me." She showed me a few other items before I forced myself to walk away so she could get back to her previous task.</em><br />
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<em> I regret to say that I did not catch her name. But major props to WalMart for hiring this fantastic woman. She not only gave me outstanding service but she gave me hope for the future. I can't wait to find an excuse to go back.</em><br />
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Flash forward to last week's CMNH event where I was able to thank the associate, whose name is Brittany, and meet her mother as well. To put some meaning behind why this was such an inspiring moment for me, it is important to understand that there are incredible disparities in employment between Pennsylvanians with and without intellectual disabilities. Those with disabilities are twice as likely to live in poverty as individuals without and only 22% have any kind of employment whether it's full-time or part-time. <br />
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Is this Caden's future - unemployment or at most, under-employment? Not if Brittany has anything to say about it. We are indebted to her for her efforts at breaking down barriers and we don't intend on letting those efforts be for naught. Thank you, CMNH, for allowing us this chance to tell Brittany how she inspires us. It was a very emotional and meaningful full circle moment. I think it meant as much to her and her mother as it did to me and Caden. And thanks to Walmart for hiring Brittany and allowing her to shine. Most of all, thank you, Brittany, for your hard work to work hard. The ripple effect of your employment will become a wave to the next generation.<br />
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**Caden is wearing the shirt that Brittany helped me select. As if this story can't get any better, wait till I tell you the reason I was buying the shirt!<br />
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Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-47251311391439335392015-03-04T11:16:00.001-05:002015-03-04T11:27:58.922-05:00The Word - Part TwoAs we do on many sunny summer days, one afternoon last year Caden and I were making the rounds on our favorite rides at Hersheypark. Caden decided he wanted to ride the mini pirate ship with no hands and asked me to tape it to show The Tank. After waiting in line, Caden buckled himself into a center seat where I had a direct view of him for taping. I laughed as he excitedly greeted the last few children boarding the ride. Then the ride attendant came by for her inspection of the restraints and realized two brothers needed assistance. I heard two women behind me laughing at the boys' inability to figure out the seat belt.<br />
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"Look at them! They're more RETARDED than that Special Ed kid!" <br />
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My head whipped around and I willed laser beams to shoot from my eyes. The words came from a very tall blonde that I had noticed behind us in line earlier because she was so striking. "California beach volleyball player" had crossed my mind. She appeared to be the mother of the boys and the second woman, maybe a friend or a sister. This second woman saw my glare and her eyes widened as she recognized me as the mother of "that Special Ed kid". The blonde was oblivious and kept laughing at her boys. I wanted to say something. I needed to say something as Caden's advocate. But dang it, I had promised to tape him with his hands held high and the ride was starting. I turned my attention back to my beautiful, beaming boy and began to tape.<br />
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A few seconds later, I felt a hand on my arm. I turned to see the tall blonde. Her face was flushed bright red and she was clearly upset as she spoke. "I'm so, so sorry. I don't know why I said that. I have an uncle with special needs. I can't believe I said that. He would be so disappointed in me." She broke into tears as she continued to say she was sorry over and over. People around us were watching our conversation nervously.<br />
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Though still furious, I thanked her for having the guts to approach me and apologize. I told her some people don't do that (see my previous blog post "The Word - Part One") so I did truly appreciate her apology. I wanted to go back to taping Caden but she placed her hand on my arm again. I realized she was trying to hug me. I was in no mood to hug it out but she persisted. I really, really wanted her to stop touching me. "Look," I told her, "Apology accepted. Let's leave it at that." <br />
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The ride ended and we both moved on to meet our children. Caden wanted to see his video and I was ticked this woman had messed that up. He wanted to try again on more rides but I had lost my Hersheypark happy. The day seemed ruined. All I could think about as we moved through the crowd was how many other people might be saying horrible things about my child but were out of my ear shot. I didn't want to share him with strangers anymore so we headed home.<br />
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The next day was another beautiful sunny day. I was determined to make it up to Caden. We went back to Hersheypark. He rode all his favorite rides again. I took too many pictures and videos and we had an amazing time. The employees are always fantastic with Caden and the other visitors we met more than made up for the rude blonde from the previous day. One girl on the flying swings said Caden was her favorite thing about the park and asked if he wanted to ride again with her. I watched his mile wide grin as the swings took them up into the air. He was in his glory. He had been in his glory the day before too. I was the one that had let a fun day get away from us. I put my sunglasses on to hide my teary eyes as I proudly resolved to always honor that glory, even if others can't see it.<br />
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<br />Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-45437106457902779072015-03-03T17:32:00.002-05:002015-03-03T19:29:08.391-05:00The Word - Part OneOne winter afternoon a few years ago found me hurriedly running holiday errands with Caden and The Tank. We planned to attend a Hershey Bears hockey game later that evening to support their special Children's Miracle Network Hospitals night. Unexpectedly, Caden fell asleep in the car between store visits. We opted to take advantage of the surprise nap so he would be fully charged for the hockey game. The Tank suggested we grab takeout somewhere and drive around feeding our bellies while our little prince slumbered away. We decided on a chain restaurant that had recently hosted a fundraising event supporting CMNH. As we pulled into the designated takeout parking space, The Tank volunteered to stay with sleepy head while I picked up our food. <br />
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Surprised that the restaurant was so busy at this time of day, I stood next to three college-aged men watching football on the overhead television as they dined at the bar. The pretty bartender brought over my order and took my credit card. The young men next to me suddenly got rowdy about a play on the screen and a certain player that they clearly didn't like. A server walking through the bar area chimed in loudly, "Oh, you mean the guy that looks like a RETARD with Down Syndrome?" They all laughed as the server disappeared into the kitchen.<br />
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My face flushed with red hot anger that threatened to spill into tears as I looked outside at my beautiful, snoozing, perfect boy, so blissfully unaware of how his diagnosis had just been used in a horribly demeaning way. I wanted to grab my credit card and run out of the building but the bartender was already walking back towards me with the receipt. <br />
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"Get that man to come back out here - that server that just walked into the kitchen," I told her in a deliberate and controlled tone. "My son has Down syndrome and he is right there!" I pointed out the window but no one dared to look. "Thank god I didn't bring him in here with me to hear what was just said." <br />
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Apparently the three football fans had just realized that their meals were fantastic as they lowered their heads and focused soley on their food. The whole place seemed to have quieted or maybe the blood boiling in my head was drowning out all the sound. The bartender returned alone, explaining that she had told the server what I said and he was sorry. Then she smiled and said nothing more. I realized he had no intention of facing me.<br />
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"You mean he's not coming out here to talk to me?" I couldn't believe he was being this cowardly, hiding in the kitchen and not willing to own up to what he had just blurted out so casually in a public place, his work place no less, and leaving his coworker to deal with me instead. "Get your manager," I demanded. I begged my eyes not to cry so I could represent my son coherently and with dignity.<br />
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The young manager finally appeared with gift cards in hand and already apologizing. "I'm sorry for what he said. I have a cousin with autism so I understand how that must've felt. He should've known better and I've talked to him." She was sincere and profuse with the apologies but I didn't want to hear it from her. I wanted the server to face me and to see how much his words hurt. But he stayed in the back, gutless. <br />
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I expressed my frustration not only at the server's words but also now his lack of accountability for the impact of his words. I shared that we specifically selected this restaurant because they supported CMNH and I would've expected much more compassion and respect from them. It was dissatisfying to be having this conversation with anyone but the server and I felt like they were protecting him. The manager handed me $20 in gift cards and I laughed incredulously. There was no way I was coming back. All I wanted was an apology from the right person but instead I was left irreparably disappointed and heartbroken. <br />
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Sickened, I climbed into our car next to my innocent boy and explained to The Tank why I was inside for so long. We were both gutted but I thought we should stick to the original plan of eating dinner while Caden slept and then heading to the hockey game. I had lost my appetite and didn't particularly want to dine on anything from this establishment but I unpacked my salad and placed it on my lap anyway. Almost as if to save me, Caden suddenly woke up and fiercely vomited, several times, everywhere. Especially hard hit was the food as I unsuccessfully tried to use the containers and carryout bag to catch the mess. It was a nightmare but couldn't have summed up any better how the restaurant experience had made me feel. We headed home to heal, in more ways than one. <br />
<br />Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com2tag:blogger.com,1999:blog-5236350969303953933.post-16365456245998417772010-09-14T08:46:00.003-04:002010-09-14T09:06:02.095-04:00Vote for Andrea and Reece's Rainbow!Caden was fortunate to be born in the United States. He will have access to a quality education, to health care, to a community, to family, to love. He will be able to dream big dreams. But some kids with DS don't draw the long straw. In many countries, children with DS are abandoned in an orphanage. Then around the age of 5, they are transferred to an institution. Some are then chained to their beds, don't go outside, don't know the comfort of a hug. Many will die within 2 years of that transfer. I can't help but look at my son and imagine him living, and dying, like that.<br /><br />This is why I will be voting in People Magazine's Reader's Choice Hero contest for Andrea Roberts. She has created an organization called Reece's Rainbow, named after her son with DS, to help these children from around the world find their forever families through adoption. Over 300 children are growing up loved, healthy, and happy because of Andrea's work.<br /><br /><a href="https://styleentertainment.timeinc.net/people/readerhero/">Vote here </a> daily until October 8. The $10,000 grand prize in Andrea's hands will literally save lives. I look at Caden and think "There but for the grace of God..."Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com1tag:blogger.com,1999:blog-5236350969303953933.post-48364743284920257522010-07-22T15:30:00.000-04:002010-07-22T15:30:40.159-04:00Heh heh heh<a href="http://www.ksl.com/?nid=148&sid=11670304">ksl.com - Boy with Down syndrome solves neighborhood crime</a><br /><br />I love this story and can totally see Caden doing something like this one day...Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com0tag:blogger.com,1999:blog-5236350969303953933.post-78826405560950333492010-06-10T09:12:00.000-04:002010-06-10T09:12:35.633-04:00Close My Eyes, Open My HeartI love that Australia has a See the Person Week (see the person, not the disability) and I love how this song incorporates that with the lyric "Close my eyes, open my heart..." This 6 member band, Rudely Interrupted, has 5 members living with disabilities which gives the song much more impact. Caden believes he is a rock star already but clearly this video shows he CAN fulfill that dream!<br /><br /><object style="background-image: url(http://i1.ytimg.com/vi/8I550mx8QlI/hqdefault.jpg);" height="295" width="480"><param name="movie" value="http://www.youtube.com/v/8I550mx8QlI&hl=en_US&fs=1"><param name="allowFullScreen" value="true"><param name="allowscriptaccess" value="always"><embed src="http://www.youtube.com/v/8I550mx8QlI&hl=en_US&fs=1" allowscriptaccess="never" allowfullscreen="true" wmode="transparent" type="application/x-shockwave-flash" height="295" width="480"></embed></object>Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com1tag:blogger.com,1999:blog-5236350969303953933.post-79187183248175487202010-04-19T16:11:00.006-04:002010-05-27T15:39:03.018-04:0026 things I learned while running 26.2 miles1. Don't run a spring marathon that forces you to train during the worst winter in the last few decades (unless you really enjoy the treadmill).<br />2. Don't run a spring marathon in the Pollen Capital of the US, aka Virginia. We were so coated with pollen, we looked jaundiced at the end, covered in yellow grit.<br />3. Always check the inside of your socks very carefully before the race. After 26 miles, even a tiny string will leave an amazing blister.<br />4. Don't trust the race organizers to have enough energy gel and Gatorade for the duration of the event. Carry your own. We had none for the last 13 miles. Half the race with only water!<br />5. Don't trust race organizers who describe the course as "fairly flat with some rolling hills" if they are also ultra marathoners and have lost all perspective on what counts as a rolling hill.<br />6. Pee wherever you want. Those same out-of-touch-with-the-common-folk race organizers will not have enough portajohns. People were jumping in and out of the woods to do their business like antelope. One's level of modesty decreases as the level of pain/exhaustion increases.<br />7. Expect the event photographer to be planted at the hardest, most grueling part of the course to catch your pain and then post on his website for all to see. That's just rude.<br />8. Cover yourself in several layers of Glide or other anti-chafe balm. Parts of your body that don't normally touch will darn near light an ember after hours of rubbing together.<br />9. The couple wearing tie-dyed smiley face shirts and sparkly antenna headbands will run faster than you.<br />10. So will the crazy screaming lady with pink hair and a sequined miniskirt.<br />11. Not true for the veteran struggling but still running with the biggest flag he could find. Salute him when you pass.<br />12. The biggest motivator is your 4 year old son cheering "Go Mommy!" I nearly flew after hearing those words.<br />13. Wear a watch. Yep, blame those race organizers again for having not one time check on the course.<br />14. Who thinks a good idea would be to have the biggest climb of the race at mile 24? Apparently my awesome race organizers. I don't know these people, and yet I deeply detest them.<br />15. If you want the best beer in the entire world, run 26.2 miles for it first.<br />16. If you want the best massage in the entire world, schedule it for 2 days after that beer.<br />17. Pack an extra set of knees because yours will be lost on the downhills of the incredibly not-flat course.<br />18. Do not be demoralized when the oldest female entrant, aged 62, is already in the pizza tent when you cross the finish line.<br />19. Wear your medal. Why would they give it to you if you weren't expected to wear it? I'm going grocery shopping in my mine.<br />20. Ever ask a friend what your blind date looks like and get the answer "He's really nice"? Yeah, well, when someone describes a marathon course as "scenic", that's code for "You're better off running through the seven circles of Hell."<br />21. You might not have the energy to cry at the finish but tears will roll when your son hands you a certificate he made at school saying "Way to go, Mommy and Daddy! I am proud of you."<br />22. A good post-marathon recovery program does not include running a 10k two weeks later.<br />23. Take it easy on your stomach for the following few days. And maybe hang close to a bathroom too.<br />24. There is no greater inspiration for finishing such a monumental task than trying to live up to the efforts of your young son with special needs who always tries his best through every therapy, doctor visit, school day, etc no matter how hard it may be for him.<br />25. And he does it with a smile because he loves life.<br />26. What's your excuse, mom? I can't ask my son to work that hard and push himself if I'm not doing it too. I run for my son. Every step of every mile for Caden.Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com2tag:blogger.com,1999:blog-5236350969303953933.post-50486678679982536212010-03-05T16:07:00.003-05:002010-03-05T16:15:40.722-05:00Alice can have her Wonderland.........I'll take <a href="http://www.morganswonderland.com/index.html">Morgan's Wonderland. Check out this new amusement park </a>opening up next month in San Antonio. It is billed as the first fully accessible park designed especially for individuals with special needs. Everything from wheelchair accessible rides to a sensory village to rest areas for service dogs, it seems they've thought of everything but more importantly everyONE. Woohoo! Go Texas!Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com1tag:blogger.com,1999:blog-5236350969303953933.post-52250994283550726342010-02-25T15:33:00.002-05:002010-02-25T15:44:41.404-05:00Up to speedSo just to update on what we've been up to these last few months, here is a very brief and incomplete synopsis....Caden had scarlet fever, got eyeglasses (that he hates), and had his tonsils and adenoids removed. He goes to two preschools, one where he is the only child with special needs and one for the Early Intervention program where he also receives physical, occupational, and speech therapy. Privately I also take him to music therapy and additional speech and occupational therapy. He's also started soccer and Kinderdance, and we've started the transition process for his entry into kindergarten in the fall. My days seem to consist of chaffeuring him around to his various obligations. Heaven forbid that I do something crazy like find time for myself to train for a marathon (6 weeks away -agh!) Thus blogging fell by the wayside. My deepest apologies. Here's to finding time to share our crazy life with you!Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com2tag:blogger.com,1999:blog-5236350969303953933.post-65061118567072884862010-02-08T09:29:00.003-05:002010-02-08T09:31:20.777-05:00Remember me?Hi little bloggy blog. Remember me? I know I've been gone for quite a while but have renewed my commitment to posting to you. Caden has grown quite a bit and is doing all kinds of amazing new things. Things that must be shared! Stay tuned ....Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com3tag:blogger.com,1999:blog-5236350969303953933.post-32197247649668414782009-07-02T14:55:00.002-04:002009-07-02T16:06:52.282-04:00Caden's birthday party<p><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dyQOdl_3Zv2d4sSklgsQzcwxkV7QHowW4pWuDQl1RQit3Yc6cId1SjmpLLnSXv-7ff_l3SkTkZavLAWeTx3_g' class='b-hbp-video b-uploaded' frameborder='0'></iframe></p><p>He was just a little excited about his party. Just a little...</p>Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com7tag:blogger.com,1999:blog-5236350969303953933.post-7760426072582842272009-06-20T22:21:00.001-04:002009-06-20T22:24:12.256-04:00Happy Father's Day<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb5jMJzH4iJZ1OTb0naaegyWKRKkZ7xWouNcejiF4EHuV-yT14lqG59s8YLRIa_b94VGay6SgP1rAEsNgk9jKLF2duzBcvlU-hwcT5F8Om2M7MojeymqsfpXYJBdwqkWcfM-difoFg0mw/s1600-h/5k2.jpg"><img id="BLOGGER_PHOTO_ID_5349600823870351922" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 235px; CURSOR: hand; HEIGHT: 320px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgb5jMJzH4iJZ1OTb0naaegyWKRKkZ7xWouNcejiF4EHuV-yT14lqG59s8YLRIa_b94VGay6SgP1rAEsNgk9jKLF2duzBcvlU-hwcT5F8Om2M7MojeymqsfpXYJBdwqkWcfM-difoFg0mw/s320/5k2.jpg" border="0" /></a> We are so lucky, Caden!<br /><div></div>Jessicahttp://www.blogger.com/profile/09568225602565669985noreply@blogger.com1