Corbin goes to the White House, part one.

As some of you know, I was invited to the White House this past week for a Community Leaders Briefing on Cardiovascular Health. I had been asked only a couple of weeks earlier if I would be interested in going, and of course, I said: heck yeah!!
The catch was I would be nominated by my local American Heart Association (AHA) chapter, send in my story, and wait to see if the national office would pick me to go.
And they did! I was going to DC!

I had declined at first, thinking I had to pay for myself to go there, but quickly changed my mind when the AHA said "No way, it's on us!"
The day of my flight arrived very quickly and my husband and I made the long drive to Roanoke to catch my first flight. My husband was going to go with me to DC, but after finding the cheapest plane ticket was around $400, we changed our minds.

So after a smooth trip through security, I boarded (what I call) a puddle jumper for my flight to Charlotte, NC. I wasn't able to get a direct flight to DC, so for the way up and the way down, I was scheduled to have one connecting flight.

My seat is in the very back of the plane where I sit next to a brown haired woman in her 50s. As I sit down, she asks me if Charlotte is my final destination and I tell her "No, I'm on my way to DC for an event at the White House". She congratulates me and we start talking about why I'm headed to the White House, about Corbin and his story, the pulse ox bill, pulse ox testing, how her daughter-in-law is pregnant with her first child, more about pulse ox, and on, and on. The flight is barely over a half hour and we talk the entire time. She tells me she is a nurse and worked in the neo-natal department for over 10 years and she doesn't understand why pulse ox is not routine everywhere. I ask if she minds if I send her more information on pulse ox for her pregnant daughter-in-law and she genuinely is interested. 

We deplane together and walk to our next terminal, still talking. I never caught her name, but it was no coincidence that I was seated next to her. Corbin's story is passed on! 
I am barely seated for two minutes at the next terminal before my second flight starts boarding. This plane is twice the size of the first, which is lovely, as you don't feel the turbulence as much. There aren't as many passengers on this plane, so I am able to sit by myself. 

I am on an aisle seat, which isn't my favorite, as I like to watch out the window. I have the tendency of feeling a little motion sick when I can't look out the window as the plane is moving on the ground. I'm fine when we are in the air, but as the plane moves down the runway, I feel better if I am able to watch out the window. So the girl sitting in the window seat probably thought I was staring at her, when all I was was watching the trees rolls by!

The flight is barely an hour, the landing is smooth, and I make my way out of the airport to catch my first cab ride ever! I was actually really excited. The driver was foreign with a middle eastern accent, and there was a sticker on the dash that said "I voted Democratic". 

The ride into town, I am mesmerized. I feel like Carrie Bradshaw when she first arrived in New York City. I am in awe of the landmarks, the architecture, the people, the activity, and how very different this is from home. I could not be more excited!

As we pull up to the hotel, I'm shocked at how nice it is. I was expecting something more "normal" and less corporate. But still exciting!

As I check in, the receptionist tells me I have been offered a free upgrade. Heck yeah! Even the elevators are fancy and require your room key to be swiped before you can use the elevator. 

I get upstairs and walk all the way to the end of the hall, open my door, and I'm expecting maybe a king bed with a mini bar.
But I get:

A kitchenette, dining area and living room WITH a fireplace!

Then a walk through bathroom...

with a never ending mirror.

And the bedroom has windows all around, looking out into the city.

With a king size bed, all to myself!

*Click here to watch my room tour through YouTube*

So after I got over how awesome my room was and how I had to pay for wireless, I basically sat at my window, people watched, and recorded my first video log of the trip. Then downstairs for dinner!

I had made plans before my trip to meet up with some Williams Syndrome mothers I had met through Facebook. There were a few that lived in DC that were able to come to the hotel for dinner and hang out for a few hours. It was a total blast being able to meet moms who had gone through similar experiences!

And I also got a drink in my first big city bar!

We chatted and laughed for hours, they kept me up late telling stories of doctors, schools, and the fun experiences that come along with having a special needs child. 

*waves* Hi ladies! It was truly amazing to meet you all. I really hope we can do that again soon!

Next, the White House!

Chicken and politics

The day started off early. Around 2 am kind of early; I could not sleep.
So I got out of bed, cleaned up the house, got my things ready for the morning, and washed my hair. I tried to go back to sleep but I just lay there for hours. 2:30..3:30...4:00. I slept on and off till about 6:30 where I just waited for my alarm to go off.

Off to the capitol!

I was lucky to find parking relatively close to the capitol building then made my way inside.
(I knew wearing those heels would be a mistake.)

We, being me, Kathy (heart mom), Pete (heart dad) and our American Heart Association partners met in the capitol building under the dome.
It being my first time there, I took pictures like a tourist.
I was also interviewed by a local TV station about my story and why we were there today.

Every year the AHA throws a heart healthy luncheon for the female delegates, called the Woman's Caucus. We were there to share all three of our stories and why Corbin's Bill was important to us.

While we waited, we were able to watch some of the action going on by legislators inside the House Chamber gallery. It was really neat to watch them in action! We were really lucky to actually catch them talking about Corbin's Bill! They mentioned the bill, that it was passed in the Health and Human Resources Committee, then they sent it on to the Judiciary Committee. Exciting!!
Kathy and I were sitting next to each other and both our ears perked when we heard "HB4327" and we both grinned at each other. What luck to catch that!

We made our way back to the meeting room, lunch was brought up, and slowly the female legislators made their way in.

After they finished lunch, we began.

Our AHA associate, Chuck, introduced us, why we were they, and what we were going to talk to them about. Kathy went first and told Jacob's story. She covered very well on how a child with a life threatening heart defect, if caught soon enough, can go on to live a full and productive life. I saw her story bring smiles to much of the room.

Pete was next, to tell his Jacob's story. His story brought some tears to the faces of some legislators, and mine too, as he fought back the tears explaining how Jacob crashed after his first heart surgery. He did a great job of showing a dad's side of the story.

As Chuck introduced me, it was very difficult to hold back the tears. As I made my way to the podium I just knew this was going to be very emotional for me. The night before I had written up a speech to keep me from talking too much, but as I started my story, I didn't need the piece of paper.
I started by saying I had a normal pregnancy, then we found out about Corbin's heart murmur, then how at his echo we were told "get him to the ER or he will die."
I had to stop there.
It was very hard to go on.
I apologized and continued. I explained how Corbin spent three months in the hospital, had three heart surgeries, then passed away right before he turned three months old. I went on to say how pulse ox is so very important for catching defects like Corbin's and Jacob's because they could have died within hours or a week if left undetected. It is crucial for pulse ox to be done at 24 hours of life to ensure that baby does not get sent home with a clean bill of health, only to die at home.
I also said that hospitals have the pulse ox test already, nurses know how to use it, and it's cheap, easy, and painless. This bill makes sense, would not cost very much, and will save lives.

The feedback we received was fantastic.
One spoke up stating that she thought it was ridiculous that something so common sense requires a law to make it happen.
Others asked questions like, "so it (pulse ox) doesn't require a lab?"
No, it is small, portable, and cheap.
When I asked if there were anymore questions, one women said "Ya, how fast can we make this happen!"
I was all smiles at that comment.
I saw a lot of heads nodding, showing their support and agreement that this bill is necessary. Many came up to us afterwards to thank us for sharing our story, to shake our hand, and ask more questions.

One came up to me and asked if during my stay if there was "something we (the state) should work on?"
I was first, stunned that she cared enough to ask, and touched that she wanted to do something about it. I mentioned that besides what we were there for, we actually had a really good experience at the Ronald McDonald house and the Ruby staff are amazing. I did bring up the biggest negative was when we were told my husband no longer qualified for FMLA because Corbin was deceased. She seemed surprised that this was the case and mentioned that she would look into it and let me know. How awesome!

So overall, I had a great time, we made some great connections, and the support we saw was very encouraging. I know we do have a long process ahead of us, that there will be bumps in the road and not everyone is going to support us, but this was a very good day. :D

We did good Corbin. It's all in your honor <3