We Heart Harlie and Friends Gala

I haven't been able to blog about the exciting new things happening with We Heart Harlie and Friends. But, we are having our first Gala, Saturday, September 29th. It will be at the Short Pump Hilton. Ticket price includes open bar for three hours, appetizers, a seated dinner, live auction, raffles, dancing and so much fun!

Normal ticket price is $150, but the early bird special is $125, which ends tomorrow! So, get your tickets now! Register here. 

I just want to tell you what this money does to help families like ours... that Taylor Swift concert we just went attended? We could never have gone if it weren't for We Heart Harlie and Friends. Not only does the money raised help provide travel to hospitals, therapies, educational help, etc., but it helps give our kids great experiences and memories! And sadly, those don't come easy to our kids.

We are looking for sponsors and items for the auction and raffles. So, if you have an item you want to donate, or a business that wants to be a sponsor, PLEASE let me know!

Thank you to all of those working so hard to make this happen! And thank you for coming and wanting to support our kids and their families!!

I hope to see you there!!

Much love,
Christy xo

Taylor Swift

Wow. That was the best show I've ever seen - hands down. I just can't thank Heather (our awesome social worker at Children's National Medical Center) for thinking of Harlie and getting us these tickets. Ahhhmazing!

When Heather first called me about the tickets, I asked her if I could think about it. To be honest, I've been struggling lately. I have no energy. The smallest of tasks feels overwhelmingly difficult. So, getting us to Fedex Field in Landover, Maryland, felt way too hard.

But, I called Maggie, my niece, to see how she felt about it. She is a huge Taylor Swift fan. She about hyperventilated on the phone when I asked her if she would want to go. I recognized that this was an amazing opportunity. So, I knew I had to make this happen.

We went to FedEx Field for the U2 concert last summer. And getting out of there and home is brutal. Driving home on 95 at 1am is not my idea of fun. Tom couldn't go (more like he wouldn't want to). So, I thought through all the options. Here were the logistics:

• We had to drive to CNMC in DC to pick up the tickets. 
• Then we would drive to FedEx Field.
• I knew it would be hell getting out of the parking lot. 
• They are always doing construction on 95 in the middle of the night, so I knew traffic would be a nightmare, even after leaving the stadium.
• Staying in a hotel wasn't an option. Harlie has way too much equipment to pack and set up, then pack and set up again. Plus, there was no time to check in before the concert. The soonest we could leave was 12:30. I couldn't make that work. 
• I would have to be in charge, drive, etc., and knew I would spend all my energy on that instead of having fun and enjoying this time with Harlie. 

So, I decided to look into hiring a car service to do all the driving for us. It was the only way we could go. My friend Bethany suggested that I call TNT Limousine. I explained what I was trying to do and they were so awesome and I think they gave me a great deal. They gave us Allen and a Cadillac Escalade (so her wheelchair could fit in the back) for 14 hours.

It was amazing. I packed a cooler of goodies and we listened to Taylor Swift the whole way there. Here are lots of pictures...

Harlie, Caylee (one of her nurses), Maggie and me. 

We had great seats - Section 126, Row 4!

We went in earliest we could to see if we could get wheelchair accessible seats. Harlie cannot stand for long, so I wasn't sure how she would see anything. Unfortunately, they didn't have 4 seats together in handicapped seats, so we decided to keep ours and make it work somehow. We gave her a piggy back ride down the stairs to our seats. And the guy checking tickets said he would watch her wheelchair at the top of the stairs. She stood on the seat and we took turns supporting her.

So, I'm going to embarrass myself here, but when Taylor Swift came on and Harlie "cheered" I cried.

I couldn't help it! The loud, energizing music, her excitement, the thought that she was having a great experience and we were making good memories was just too much!! What a difference from what could have been.  I wonder if I'll ever be free from that thought.

Maggie and Caylee supporting Harlie. 

 There were fireworks...

fire...

lights...

 snakes...

and confetti...

She sang two songs right in front of us.

We all got bracelets that lit up throughout the show. It was pretty cool.

At one point, the girls in the rows closer to the stage asked us to switch seats so Harlie could be closer. They even helped support her standing, too.

It is amazing what some people notice and then how they choose to act. There are so many good people left. The negative ones are just louder for some reason. I would love to see that change in time.

It really was an AMAZING experience. I want to write Taylor Swift and tell her that she made my daughter want to stand, even though it was so hard for her, for two hours. I think that is one hell of a compliment. I put my foot in her chair and let her sit on my leg to give her breaks. Whoa, that was a work out for me!

We got home at 2:30am. We were exhausted. But, it was so worth it. I liked Taylor Swift before her concert. But I loved her after.

I'm so thankful that they donated the tickets to the children's hospital and that we got to go. And I'm so thankful for good memories.

Much love,
Christy xo

Ambition and a concert...

Hi! I am so sorry it has been so long since my last update. Life is busy and I have been having a very hard time keeping up.

I have so much to tell you, including an update on We Heart Harlie & Friends. This will include the Corn Hole Tournament held back in June, and our exciting first ever Gala coming up in September! So, stay tuned for that.

For now, I thought I would start with what happened on the last day of school, on June 15th. In the weeks leading up to the last day I received a letter form Harlie's school informing me that she would be recognized for her "ambition." Each quarter the school focuses on a word, like determination, empathy, ambition, etc. And at the pep rally at the end of the quarter they call out the student's names who emulated the word. Each parent gets a letter that lets them know their child will be recognized, so they can attend.

So, me and Harlie's nurse, Caylee, took Harlie to school for the pep rally that day. The students stood up as they heard their names called. You should've seen Harlie's face when she heard her name. She was so surprised! When she got out of her wheelchair to stand, everyone clapped for like two minutes! It was amazing. Truly.

I tried so hard not to cry, but it was impossible. It felt so supportive. It felt like everyone knew we almost lost her and that they were so glad she was standing there, still with us, with a smile on her face. It makes me cry every time I think of it.

I think what happened to Harlie can make people so uncomfortable that they don't want to talk about it. So it is the simple acknowledgement from the students, the staff and the other parents there that speaks to me the most. So, if you were there that day, thank you. Truly.

Harlie started her tutoring with Ms. Johnson and she made this folder for her school stuff. So cute!

And we just got Harlie's hair cut. It was too long to be practical with the trach. It was constantly in the way. I'd say she feels pretty good with the new cut.

Okay, there's so much more to tell you about. One last exciting thing before I go...

Our wonderful social worker at Children's National Medical Center called me last week. She said that Harlie has told her several times that she wants to go to a concert. So, when she heard that the hospital received some tickets to the Taylor Swift concert, she thought of us. So, we are headed to FedEx Field (where the Redskins play) to see Taylor Swift tonight! Woohoo!

So, I promise I will post again later this week.

Thank you so much for all your support!

Much love,
Christy xo