Saturday, July 3, 2010

Video link, etc.

I never could figure out how to post our video here, but it's up on YouTube. Here's the link:

We've been home for about three weeks now, and life is slowly getting back to normal. Last week we all participated in the Spina Bifida Association of America's national conference in our home town of Cincinnati. It's always fun to connect with other parents of children with SB and adults with SB as well as hear sessions from doctors, nurses, and therapists. One of Amelia's surgeons was talking to a mom from out of town about one of his patients who is "young and very complicated, but an excellent self-advocate, and very educated about her condition." I overheard this as I was helping coordinate some volunteers, and the surgeon actually grabbed me and said, "Here's the mom of the little girl I was talking about!"

Amelia is going to be having another surgery in August on both feet, so we're going to try to get all of our swimming in before she comes home with two casts at the same time! She had the option to do one surgery at a time, but told the surgeon, "Just get it done!" She cracks me up.

Wednesday, June 16, 2010

The White House

First of all, I owe you an apology. My last post claimed to have a video, but after spending longer trying to upload it than I did to make it, no video appeared. It's a good one, too!

So we finally come to my favorite part of the week. The trip to the White House. I can't even believe I'm writing these words. I was raised in a political family; my father was in local politics throughout my childhood, and I learned from a very early age how important democracy is, and how hard people before us fought to earn it. I also knew, as a politician's daughter, how hard those elected officials worked. So the chance for my daughters and I to meet our President has been on my mind since I first learned that Amelia was chosen as Ohio's CMN Champion in December.

The girls were awed by the very tight security to get into the White House, and my favorite moment was a priceless Amelia Moment. We're passing through the final security checkpoint, going through the metal detector, and the Secret Service agent is checking Amelia out. Here's a very close reproduction of their conversation:
A:"Don't be alarmed when your wand goes off. I've got metal in me."
SS: "Really? Well, that's fine."
A: "Don't you need to know where? Don't you want some details?"
SS: "It's okay. I trust you."
A: "Well, I just want to make sure you know I don't have anything bad on me. Unless you call a screw in my ankle bad, but I can't really help that now. My braces have metal, too, and I can't take them off or I can't walk. And my mom wants me to look good when I meet the President. Have you met the President? I'm going to. Because I'm a Champion."
SS:"Alright. You have a good time."
A:"You sure you don't need to know which ankle has the screw? My chair is titanium, so I don't know if that beeps."

Have I mentioned how much I love this girl?

We breezed through security, pin and all, and started to walk down the hall into the East Wing of the White House. We were walking directly behind David Archuleta, so I'm afraid my girls were more interested in what HE was doing, but I was soaking it all in. Once we reach the Wing, we are allowed to walk through the rooms at our leisure. They even - gasp - let our kids sit on the furniture and take pictures. The very enormity of it all was getting to me, and I'm afraid I was giggling a little bit.

We walk into the large yellow dining room (where we'll soon meet President Obama), and there are two large trays of water set out. Here's MY silly conversation with the Secret Service agent.
P: "What are these trays of water out for?"
SS: "In case anyone is thirsty."
P: "Really? We can just take a drink out of a presidential glass and drink White House water?"
SS: "Um, well, yes ma'am."
P: "Hey, Emma! Get a picture! I'm going to drink White House water!"
(I never said I was cool...)

Amelia's ONE big plan for our entire trip was to see the First Dog. For those who don't know her well, Amelia is the dog fan of all dog fans. She can see a dog from a distance and tell you the breed, characteristics, etc. She's been telling everyone that she planned on seeing Bo, the dog, on her trip, and I wasn't sure it was going to happen. When we were in the Blue Room, Amelia asked the Secret Service agent if he'd ever met the dog, and the two of them got into a 25 minute conversation about the dog, the person who apparently follows the dog around (Amelia said she wants that job), etc. He said he had seen Bo outside on the South lawn earlier and it was too bad we had missed him. Our miracles weren't done for the trip, it seems, because a few minutes later I was looking out the windows and screamed for Amelia. There he was. BO. He was far away and through multiple layers of security glass, but Amelia got to stand at the window for ten minutes and watch the dog. Thank you, God!

We were eventually told to gather in the dining room, where the kids were placed on risers in anticipation of the President. The wait was a little long for 55 kids, so our amazing CMN bus leader Aubrey started a sing-along. What better sing-along than one that includes an American Idol finalist, right? With no convincing, David Archuleta stood in front of the kids and gave an impromptu performance of "Lean on Me." It was amazing, but let me tell you why. Whenever Amelia has a surgery (and this happens often, since she's up to 51), I have a playlist on my iPod that I listen to. It's a mix of inspirational and soothing songs that carry me through the wait. Each song on there now reminds me of those emotions I feel as I wait for my baby to come out of surgery, and the joy I feel when the doctors once again do their magic for us. "Lean on Me" has been on that playlist for many years. David starts singing and I'm suddenly overwhelmed with the joy of having this opportunity, the esthetic appreciation of such a beautiful instrument in such a gracious young man, and the accompanying emotions related to Amelia's medical struggles. I wish there was a way to let David know what those minutes meant to me.

A few more minutes passed, and the staffers started closing doors and shuffling around, so we knew it was coming. Suddenly in walked President Obama. Regardless of your personal political viewpoints, (and I'll admit that I'm a huge Obama supporter) in walked the President of our country. His sole purpose for these moments was to greet our children and bring joy to them, while also hopefully getting a ray of hope from them as well. This could have been a very business-like in and out, but it was not. He was gracious, personal, and engaging. When it was time for the picture to be taken, the White House photographer (that's the job I want) wanted him to stand behind the kids. He wanted to sit among them, but she nudged him to stand. "No," he said, "I want to be with the kids. Just make it work." And so he got down on their level and sat among them.

He answered questions, and I'm thrilled to say that my angel was the first to be able to speak with him. Her subject? Bo, the dog. Of course. I was cracking up from my tiny spot on the side nestled among all the other parents. As he was finishing up, he shook hands with the kids, and since Amelia was on the end, she was also the last kid to speak with him. Again, it was a classic Amelia Moment. "My momma loves you. She has all your stuff. (I have two Obama action figures, Obama socks, a bobblehead, an Obama Chia pet, etc...) She hasn't grown the Chia yet, and she probably never will." I'm sure he didn't know what she was talking about, but her mother was beaming with pride.

Before he left, he passed by the parents on the side and shook our hands as well. Both of my other girls and I got to shake his hand. I'm still trying to decide if I should ever wash that hand.

We left the White House proud, dazed, and thrilled at our opportunity.

Tuesday, June 15, 2010

Trip Video

Wednesday - Part One

Interview with Miss America on FOX
We started our day Wednesday very early, with a trip to the local FOX channel, where Amelia would do a live video feed to an Ohio FOX station with Miss America. Several of the champions were doing interview for their states as well, and some were going to do radio interviews with David Archuleta.

Amelia was pretty impressed that she had her hair and makeup done (she IS a girl, after all), and couldn't quite figure out the earpiece she got to wear. She started getting nervous before, but we played it cool and said it's no big deal (because of course I do live tv interviews with Miss America ALL the time...). When we walked into the studio, she immediately warmed up and started chatting away. Roger, from CMN, leaned in to me and said, "This one will be no problem! She's a ringer!" When the time came, Amelia looked straight into the camera and gave a great interview. I only wish I had a copy of what aired!

Lunch - M&S Grill
If you live in D.C., or go to visit, please visit M&S Grill. It was close to our hotel, and I had heard they had good food, so we went for what I expected to be a quiet lunch. I don't know if it was the Champions shirt Amelia was wearing or her natural charm, but we quickly began causing a stir at the restaurant. In no time, we were seated and introduced to the manager and chef of the restaurant, and they started sending out food for us to try. Two waiters both showered us with attention, and one made a big deal about getting Amelia's signature on his menu. The food was outstanding, the service exemplary, and the impression lasting. When it was time for us to leave, I asked for the check, and our waiter Andres said that the manager was happy for our meal to be on the house. What an impression this made on the girls! Thank you, M&S Grill for making even our lunch a memory to be remembered.

Meeting David Archuleta
We headed out for the short walk to the White House, and we happened to be close to the front of the line. When we reached the first security point, we were trying to line up (but we were all so excited it was tough to follow directions!), and who should walk right next to us but David Archuleta. The girls and I had watched David on American Idol and had some of his music on our iPods. And now he was two feet away from us! I thought Claire was going to have a stroke! After trying to be polite and not act like a crazed fan, the girls caught his attention and he came over and had a conversation with them and signed autographs. What a polite young man he is. He didn't appear at all bothered by the dreamy eyes all of the girls were giving him, and took his time to talk to all of the kids. The best part of it all, though, was once we were in the white house. More about that in the next post.

Saturday, June 12, 2010

Her official Capitol Building photo

Day two in Washington

Day two of our trip of a lifetime continued to amaze us. It was the calmest of the days, but was by no means dull!

All of the Champion families went to the Dirksen Senate Building for lunch. CMN had invited senators and representatives to stop by and get a chance to meet these inspiring kids. We were welcomed by Senator Orrin Hatch, and many others came by to see their families. The girls had a lot of questions about the amount of security we were going through on this day, and I tried to give a lesson in government. We got to meet with staffers from Ohio Senator Sherrod Brown's office as well as a staffer from Ohio Senator George Voinovich's office.

At the end of lunch, most of the families went back to the hotel for a day with their family, but several of us had private meetings arranged with our senators. Our family was excited to actually be invited to the Capitol Building to meet with Senator John Boehner, the Minority Leader of the House. We were accompanied on our trip by several Walmart executives and President and CEO of CMN, Scott Burt. Boy, did we feel important!

Unfortunately, there had been a small plane accident at the airport, so Senator Boehner's flight had been delayed. We had an opportunity to meet with his chief of staff instead. We got to talk about the importance of Children's Miracle Network and the help it gives to hospitals and children nationwide, the impact that Walmart's support of CMN has on these hospitals, and how this impacts Ohio and states like it.

For my part in each of these meetings, I tried to put a human face on what chronic healthcare needs are for Ohio citizens. I told a short version of Amelia's story and explained how we moved to Ohio to be closer to an excellent hospital. I tried to explain the vast financial strain that lifetime medical concerns have on a family, and then discussed some NIH and healthcare funding opportunities that the Senators have. I also invited all of them to visit Cincinnati and Amelia at Cincinnati Children's Hospital so that they could meet her in person and get to see for themselves what tenacity and strength look like in an almost nine year old body.

The rest of the day was for us to fill on our own. Each family did what they wanted. We went to another Smithsonian museum, went to the Washington Monument, got some dinner, and hit the ever important hotel pool.

Monday, June 7, 2010

CMN Champions descend upon Washington

In my wildest dreams, I didn't expect that our CMN trip would be so amazing!

The trip started on an incredible note when we walked into the Dayton, OH airport and were greeted with, "Hi! Are you the Murphy family? We've been waiting for you!" The staff at Delta extended every courtesy to us, and made the four of us feel like celebrities. When it was time to board the plane, the gate agent made an announcement about how there was a V.I.P. on the plane, and then explained Amelia's champion status and said they were proud to be escorting us to meet the president.

When we disembarked in Washington, we were greeted by Delta and CMN staff, as well as a whole crew of Delta employees who were getting ready to fly the Cincinnati Reds back home, so they were in Cincinnati t-shirts. Everyone was cheering. The girls were loving it.

Once we reached our hotel (the beautiful and amazing Marriott International on Pennsylvania Avenue. . . mere blocks from the president!), there were even more Children's Miracle Network staff and Wal-Mart represenatives, greeting us by name, and giving us everything we'd need for the week.

This morning started early, and while the girls were still a bit tired, they perked right up when we reached our first location. We had a private party at the ESPN Zone, complete with breakfast, entertainment, lots of mingling, and all the games the kids could possibly play. Our special entertainment for the day was country star Mark Wills and Miss America. CMN and Wal-Mart is doing everything possible to pamper our brave kids this week, and all of the parents are appreciative.

After ESPN Zone, we took a bus tour of Washington. Our bus was the best of the bunch, of course. We got to ride with the president of CMN, the chairman of the board of directors of CMN, and Miss America. But, of course, this week the kids are the real stars. We've met kids who deal with every possible health issue, but the most remarkable thing about each of them is that they're also completely typical, adorable kids. Amelia is trading knock-knock jokes with her friend from Maine, and talking about dogs with her friend from Arkansas. She's trading tips about wheelchairs with the champion from Wisconsin, and on and on and on.

We rounded off our day at the Smithsonian Museum of American History, where we ran into friends from Cincinnati! And right now, the girls are vegging out in front of some tv before we hit the pool.

Two more days of amazing fun are ahead of us. I am struggling to not be constantly overcome with tears, as we are surrounded by so many people who have been working for months just to show us a good time. Of course I know my kids deserve this, but it is so wonderful when so many people know this, too. I cannot thank Children's Miracle Network, Wal-Mart, Sam's Club, or any of the CMN sponsors enough right now. We are blessed.

And now, we're off to the pool.

Thursday, June 3, 2010

Three days and counting until D.C.

We are getting very excited around here for our big trip to D.C.! Getting four females packed and ready might just be the toughest part of our preparation, but we'll get it done.

Several weeks ago Amelia and I had the honor to be part of the CMN Campaign Kick-off at the Fairfield, Ohio Wal-Mart store. Amelia's eyes got huge when we walked in and saw a banner with her face on it. "That's ME, mom!!" She didn't want to give a speech, but wasn't at all hesitant to step in during any of the speeches about her or about Cincinnati Children's Hospital. As always, the crowd was eating out of her hand, and everyone there adored her. She has an uncanny way of letting people see the struggles she goes through while still being able to see the joy and strength she has.

Sunday morning we'll board our plane and head to Washington, D.C., where we'll get to meet the Champions from each state. We're looking forward to spending time with other families who live through similar challenges and are inspirations to those they know. We feel honored to be the Ohio Champion family, and hope to help raise awareness of the amazing care that children receive from CMN hospitals.