Championing in Washington DC!


It was 4:30 on Saturday morning when we dragged ourselves out of bed to fly all day from San Diego to Washington DC for the second leg of our trip with the Children’s Miracle Network Champions. We had a connecting flight before we finally arrived at 5 p.m. in DC, and we trudged off the plane tired and dirty.

There was a man waiting at the entrance to the airport, and I thought, well, that’s nice that Children’s Miracle Network sent someone to greet us. He noticed Brenna’s Champions shirt and asked her name, so I told him, and suddenly, he whips out a microphone and announces in a booming voice: BRENNA WESTLAKE FROM ILLINOIS!

100, 200 people maybe, break out in cheers, camera lights start flashing, a videographer closes in, people reach out for high fives as they form a greeting line… I’m just wondering why I didn’t slap on a little makeup on that last flight 😉 It was such an exciting welcome – and we even ran into the Minnesota WNBA team who gladly took pictures with some of the kids!

Once we got to our hotel, it was getting later and we still needed to do Brenna’s bath, but we rallied – grabbed dinner and headed down to the CMN Superheroes Kick-off Party, where we met many of the CMN staff and started to meet a couple of the other Champion families.

In the morning, Brenna got a special treat – hanging with Miss America! Betty traveled with us the entire trip, and she was so sweet to Brenna, particularly that first day when the Champion kids were participating in a group photo shoot and Betty kept talking to Brenna about her brother and her cat and school so Brenna wouldn’t be nervous around the boisterous group.

That same day, we also had some free time and headed for a late morning snack to District Doughnut! The doughnut shop’s general manager has a son with ichthyosis too, so we were able to meet and spend some time with this super nice family. And the doughnuts – YUM. I’m getting hungry again just looking at this photo. Maybe they will ship some to me….
Brenna was one of the youngest Champion Ambassadors on the tour, but she didn’t hold back on her spunk and sass. I realized on this Washington DC trip that I am glad she is a young participant because it has become more of a family affair and has really included Connor too. We got to shoot lots of promotional photos and videos, both of Brenna individually and the whole family.
It wasn’t all work though – CMN was thoughtful enough to give us the perfect amount of free time to explore some of the history of this amazing city! We went to the top of Washington Monument, admired the Lincoln, FDR and Jefferson memorials, walked by Ford’s Theater, and spent some time at the Museum of Natural History so that our future paleontologist could see dinosaur fossils!

As we walked into the dinosaur section at the Museum of Natural History, Brenna got really excited (mostly because Connor was so excited) and began dancing around. A woman behind us started laughing with her friend, “she’s so adorable! Look at her, she’s so excited!”

A couple of minutes later, that same woman found me again and asked me “do you have a blog?” Once I said that I did, she told me “I thought so! I have seen your blog before, and after we walked away, my friend asked about your daughter’s skin, and I was able to educate her. I was able to tell her it was a skin condition. So keep up the good work, you are really educating people!”

Out of the many not-so-nice reactions we had to put up with (and mostly just choose to ignore) on this trip, that woman’s thoughtfulness is a bright light in my heart.

In the middle of our trip, we were treated to a fun night out at the baseball park! It was a refreshing event for us, because truthfully I’m not sure we’d be brave enough to want to attempt a professional baseball stadium in the middle of the hot summer. But at the National Games, the Children’s Miracle Network coordinated a place for us to go if Brenna needed shade or air conditioning, and we had a physician traveling with the whole group who checked in before the game about the plan to ensure she’d be cool enough, since she’s unable to sweat on her own. It was such a relief knowing we had “medical back-up” for any ichthyosis issues that might come up, and it made our night much more enjoyable!

We were gifted with an evening that turned cloudy and cooled off enough that we didn’t need to worry about using Brenna’s cooling vest, and we indulged in nachos and hot dogs and sno-cones. The Champions got special recognition out on the field, which was fun for Brenna, but especially fun for her dad who “had” to accompany her 🙂

Our last full day was spent on Capitol Hill! We got to eat lunch in the same room where the Watergate Hearing occurred, and many of the families met and talked with their state senators. As we were wrapping up our time there with a tour of the Capitol with the Pennsylvania family, a Capitol police officer noticed us and asked that family about why we were there. He shared that his brother is disabled, and he has a heart for kids with illness or disabilities.

Then, that kind police officer pulled our two families out of the general tour and treated us to a little side tour, where we got to step out on Speaker Paul Ryan’s private balcony – with absolutely gorgeous views of the city! – and sit in the actual seats on the House of Representatives floor! We were so grateful to him for that special experience!

Beautiful city views – but the sun was little bright for the kids!

The last day of our whirlwind trip arrived quickly – but first we got to do a satellite media interview at the Newseum with Miss America! Brenna was really excited about this, so we practiced some answers she could give. Unfortunately, the only question she did get asked was how she was doing now – “good!” she said – so she decided to take it upon herself to ask if she could wear Miss America’s bracelet right in the middle of the interview. The girl knows that it’s important to make a fashion statement on national TV 🙂

So proud to be representing the great state of Illinois for 2016, and so honored to have the opportunity to advocate for the essential work of Children’s Miracle Network hospitals across the nation! Thank you, CMN, for our amazing trip and for all that you do!

My new book, A Different Beautiful, is releasing August 1 and now available for pre-order!

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