Back from Florida!

Hey everyone,

So I am back from Florida! Last night our flight kept getting delayed so I didn't get home till about 1:30 AM. Needless to say, I was exhausted. Especially from all the walking around we had done over the course of the week. We went to Universal Studios Islands of Adventure, Disney World's Magic Kingdom, Sea World and Wonder Works. Wonder Works is kind of like a science center but the building is turned upside, so it is known as the 'Upside Down House'. 

We didn't spend a lot of time in Sea World since it was a down pour constantly and all the rides closed down. In Universal Studios we visited the Comic Book Land, Dr. Suess Land, Comic Strip Land, Jurassic Park land and of course Harry Potter world where we tried their Butter Beer. The shops in Harry Potter world were amazing, but the whole place was crowded so we didn't spend a lot of time there either. 

The conference went really well! I gave my speech about creativity - especially blogging and writing as a coping mechanism. I also performed American Sign Language to music to the song 'Power of One' which went perfectly with the theme of the conference 'The Power of One; From a Kitchen Table to Around the World'. I had so much fun answering questions and meeting people who sat in on my session! 

A lady gave me her business card after my speech and asked me to write a few paragraphs about this years conference for the next edition of a book called 'The PH Patient Survival Guide'! I am so excited to help her with this and to write a few sentences about all the sessions I attended this year! 

Speaking of sessions I attending, I went to a Teen PH Support Group and I sat in on a Low Salt Diet session. In that session we could all ask questions as to how to go about doing a low salt diet, not getting to dehydrated and things like that. 

This conference was amazing and I really enjoyed our stay in Florida! The next conference is in 2 years and it will be in Indiana. I am already excited for it! The did film my speech, and once I get a copy of that - I will post it on here! 

Hope and Love,

Becca 

Florida Trip!

On the 20th of June, I along with my family will be boarding a plane and headed for Florida! Because I was born with a lung disease called Pulmonary Hypertension - we are going to an annual conference that takes place every 2 years and this year it is in Florida! I went to the last conference and I loved it! I got to meet people who had the same thing as me, talk about our experiences and make great friends. (Or in the PH community they are called PHriends.) This  conference to me is a lot like heart camp. We are all dealing with the same thing. We are all understanding and accepting of one another. We may not see each other very often, but when we meet up at the next conference it is like nothing has changed and we are still great friends.  

Along with sitting in on some interesting topics (such as how to live with a low salt diet, which I need to start doing again) I myself will be part of a panel that talks about creativity as a form of coping; specifically writing/blogging. I will also be attending a support group meeting for teens with PH and then later that night I will be going to an after party for PH patients who are between the ages of 20 - 30 to meet, have and just talk. Get to be normal, regular, young adults. And to add to the excitement, my family and I will be visiting Disney World! 

I know it will be hot and sweaty in Florida - but I am so excited! I can't wait for it! I'll make sure to take lots of pictures and share this amazing, uplifting and inspiration event with you all when I get back!

Hope and Love,

Becca 

Blog Entry for ACHA

Hi everyone, 

I write blog entries for Adult Congenital Heart Association and I wanted to share with you what I wrote for this month's entry. Here it is: 

As all of you know, having a congenital heart defect means you have a scar—or a few of them. For the majority of my life, I haven’t felt too self-conscious about my scar. I like to thank the heart camp I’ve gone to since the age of eight for helping in that field. However, I won’t lie—when I started high school and my scar from my surgery in 6th grade was still bright pink and bumpy, I was self-conscious about it. I even went as far as to get special make up to cover it up.

I just didn’t feel like me. I felt like I was lying, or covering up my defect. Granted, my heart condition isn’t all of who I am, but it is part of who I am. If I take away that small part of me, I am no longer me. So with that in mind, I started to feel more comfortable with my scar. I wear v-neck shirts and scoop necks. I have no problem with my scar or my body.

But last weekend I was suddenly pulled back to my state of mind when I was a freshman in high school and feeling self-conscious about my body. I was invited to a BBQ for the organization that I give speeches for about my experiences with bullying. I was excited to meet the other speakers and learn who I would be working with. But then I started to freak myself out.

I started to worry that all the girls there would be in these tiny bikinis and have perfect skin. I worried and freaked myself out that these people would look perfect while I sat there with a huge, ugly scar on my chest. And I didn’t know any of them either, how was I supposed to make friends with people who looked perfect when I looked… like me?

Thankfully, I was pleasantly surprised. I forgot that there are people from all walks of life who also give speeches for this organization. Some talk about their past with eating disorders because they hated their bodies at one point too. There was another girl who had gotten bullied so badly she dropped out of high school and got her GED instead. There was another girl who wore the scars she got from suicide attempts on her arm.

I had convinced myself that I would be the only one who had insecurities about her body and herself. But I couldn’t have been further from wrong. The BBQ went great, and I really like the people that I work with. I know that they, of all people, will be understanding, kind and caring about how I feel and what I’ve gone through.

When I got home, my mom asked me if anyone had asked about my scar and why I had it. I smiled and shook my head and told her, “Mom, there were two girls who had cuts all over their arms. They don’t care about the scars. Maybe they didn’t even notice mine.” I told her with a grin. I have never felt more in my element than with this group of people besides when I had gone to heart camp. Like camp, these people and I had a connection and we understood one another.

But for those of you who, like me at times, have self-conscious thoughts about your scars—don’t. Your scar does not define you as a person. Yes, it is part of your life, but it is not your whole life. So don’t let it stop you from living the rest of your life. My scar doesn’t hold me back from wearing bathing suits and going swimming. I don’t let my scar hold me back from wearing a lower-cut shirt.

If you want people to forget you have a scar, then you start forgetting it first. I act like a normal, healthy, outgoing teen. That’s what people see me as because I don’t let my scar or my defect represent me. I represent me. Start letting your personality represent you and not your scar. 

Hope and Love,

Becca 

Knott's Berry Farm

Hi everyone,

So last week I went to Knott's Berry Farm for the first time! I performed there with my Sign Language group. And for those of you who don't know just what I mean by signing to music , here is a brief explanation. We put a CD into the player and while the music (lyrics and all!) is playing from the speakers, we interpret what is being sung into Sign Language. 


I had never been to Knott's Berry Farm before but I had looked up on the internet to see what rides they had. Sadly, I am limited to only a few rides. Usually the kiddie ones. Haha. This is because of my heart condition and the pacemaker/defibulator I have. Some of the seat belts for the rides, the ones that go over the shoulders could move the pacemaker/defibulator that is inside of me. And the G-Force from the roller coaster could possibly kill me. So it's best that I stick to carousels and water rides. Which I don't mind, thankfully. But I must say, I do miss being able to go on roller coasters. I am an adrenaline junky; so it is a bit sad and hard for me to watch all these people come off of roller coasters with these big smiles on their faces and know that I can't do that. I think one of the things I look forward to the most with a transplant is that I will be able to go on my beloved roller coasters again. While I miss Mountain Dew because I can't have caffeine and I wish I wasn't on a low salt diet - I miss roller coasters the most. 


However, I did have fun even if I couldn't go on the roller coasters. I went on the rides that I could go on and I enjoyed every minute of it. It was a great way to start the summer. I got to do one of my favorite hobbies, go on a bunch of rides and I hung out with a group of amazing people. I think it's important to remember that just because you can't do a few things - doesn't mean you can't have fun. 


Hope and Love,
Becca 

Here is a video of me doing American Sign Language to music to help you see just what exactly I do.