Friday, August 7, 2015

First 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.

http://blog.childrensmiraclenetworkhospitals.org/2015/08/from-the-mouth-of-a-miracle-mom.html

Tuesday, June 16, 2015

Though they be but little...

...they are mighty CHAMPIONS!

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 Children's Miracle Network Hospitals website 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.































Friday, June 12, 2015

Champion Tour Day Five: Washington, DC

We 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.

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.




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:
TV interview with WGAL

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!

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.



Champion Tour Day Four: Washington, DC



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!



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. 





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. 




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.








Thursday, June 11, 2015

Champion Tour Day Three: Washington, DC

Here 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!

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.






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.

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!



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"!





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. .


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.





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!