Imagine a World Without Hate

The Anti-Defamation League has put out an amazing video called "Imagine a World Without Hate" and I want to share it with you. I don't need to say much about it except that the people in this video have all been killed because of people who hated them for one reason or another. Just think of how different the world would be if they were still here. Imagine how amazing the world would be if hate did not exist in this world. It would be amazing. So lets take a stand and help make this world just a little less hateful. 

Hope and Love,

Becca 

Music Monday

I want to thank all of you who wished me get well wishes, I really appreciate them all. I took some more asthma medications and did the breathing treatments more often, so I was able to kick this asthma problem in the butt which is good. Usually my asthma problems can last for a while but since I caught it early and started working on it, I was better in a week. Just in time to post a song for Music Monday! 

So last night I went to my little sister's church choir concert and they sang this song at the end. I was so close to tears as was my mom. I knew that I had to share this song with you. It's called 'Go Light Your World' by Chris Rice.

There is a candle in every soul
Some brightly burning, some dark and cold
There is a spirit who brings a fire
Egnites a candle, and makes his home

Carry your candle
Run to the darkness
Seek out the helpless, confused and torn
And hold out your candle
For all to see it
Take your candle and go light your world
Take your candle and go light your world

Frustrated brother, see how he's tried to
Light his own candle some other way
See now your sister she's been robbed and lied to
Still holds a candle, without a flame

Carry your candle
Run to the darkness
Seek out the lonely, the tired and worn
And hold out your candle
For all to see it
Take your candle and go light your world
Take your candle and go light your world

(hey now..nanananana)

Cuz we are a family
Whose hearts are blazing
So lets raise our candles and light up the sky
Prayin to our Father in the name of Jesus
Make us a beacon in darkest times

Carry your candle
Run to the darkness
Seek out the hopeless, deceived and
Hold out your candle
For all to see it
Take your candle and go light your world
Take your candle and go light your world

(hey now nanananana)

Hold out your candle
For all to see it
Take out your candle and go light your world
Take your candle and go light your world
Take your candle and go light your world

(hey now nanananana)

Take your candle, hold it high and help light the world. One flame can start a fire. Will your candle help spread the fire of change, love, understanding and acceptance? Will you light your candle and help bring light back into this world? Hold out your candle for all to see, and go light your world. 

Hope and Love,
Becca

30 Things to Know about my Invisible Illness

My mom sent me a link to a website where they asked people to fill out this questionnaire about their invisible/chronic illness for invisible disability awareness month. Here is mine. 

1. The illness I live with is: Tetralogy of Fallot, Pulmonary Atresia and Pulmonary Hypertension

2. I was diagnosed with it in the year: 1992

3. But I had symptoms since: 1992

4. The biggest adjustment I’ve had to make is: My low salt diet, no caffeine and no roller coasters

5. Most people assume: Just because I look healthy, that means I am.

6. The hardest part about mornings are: Having enough energy to actually get out of bed.

7. My favorite medical TV show is: ER, before it went off the air.

8. A gadget I couldn’t live without is: My pacemaker/defibrillator and oxygen tank

9. The hardest part about nights are: I lay awake, worried about my future

10. Each day I take __ pills & vitamins. 45

11. Regarding alternative treatments I: In my case, they don't work and are impractical.

12. If I had to choose between an invisible illness or visible I would choose: Invisible. While having a visible illness may make people be more understanding since they can see it, I would rather them assume I'm like any one else and treat me as a normal person.

13. Regarding working and career: I worry about if anyone will hire me because of how much insurance will cost. I wanted to be a nurse for as long as I was little, but I know now that it is too physically demanding for me.

14. People would be surprised to know: I need a heart and lung transplant and I am not allowed to have biological kids.

15. The hardest thing to accept about my new reality has been: It's not a new reality for me since I've been living with this my whole life. But I've never gotten over the fear of dying. 

16. Something I never thought I could do with my illness that I did was: Graduate high school

17. The commercials about my illness: This question makes no sense 

18. Something I really miss doing since I was diagnosed is: I have never been able to breath like a normal person. I'd love to know how that feels.

19. It was really hard to have to give up: Roller coasters and salt. 

20. A new hobby I have taken up since my diagnosis is: Sign Language 

21. If I could have one day of feeling normal again I would: Go on a roller coaster, eat KFC, have Mountain Dew and go skydiving. 

22. My illness has taught me: Never give up and miracles do happen. 

23. Want to know a secret? One thing people say that gets under my skin is: "You look healthy." 

24. But I love it when people: Take the time to really understand what I'm going through. 

25. My favorite motto, scripture, quote that gets me through tough times is: "Be kinder than necessary, for everyone you meet is facing some type of battle." 

26. When someone is diagnosed I’d like to tell them: Just hang on, it does get better and it doesn't mean your life is over. 

27. Something that has surprised me about living with an illness is: I am not alone. I used to think I was, but I know now that I'm not. 

 

28. The nicest thing someone did for me when I wasn’t feeling well was: Just listen to me complain and be there for me, supporting me. 

29. I’m involved with Invisible Illness Week because: I know first hand what it feels like for people to think you're faking it or think you are healthy just because of how you look. I want people to become more aware that you really can't judge a book by its cover. 

30. The fact that you read this list makes me feel: Like there is hope that people will start to be more understanding and aware.

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 

Camp Family

Hi everyone!

This weekend I had my camp party where several of the kids from camp came to my house to swim, eat, watch movies and just have fun. I go to a camp for kids with CHD. (Congenital Heart Defect) We went swimming (for about 5 minutes because it was too cold! Lol.), we had a water balloon fight, squirt gun fight, roasted hot dogs for dinner and made smores over a camp fire.
We all sat down near the end of the night and watched old camp pictures of us from years ago. We only get to see each other twice a year, so this party was a great and much needed get together for all of us heart kids. Before I went to camp, I felt alone and like I was the only one with a heart defect. But camp has shown me and so many other kids out there that you are not alone and that there are people out there who know and understand what you are going through.

All the girls spent the night on Saturday and we stayed up till 4 AM in the morning. We talked about boys, movies, fashion and even dancing. But for the better part of the night we talked about things that we couldn't talk about with any of our friends at school. We talked about our fears, about the times when we have been made fun of because of our scars, the times when teachers haven't understood of our health problems and all the people out there who just assume we are healthy because we look healthy. My friend told us a story about how a teacher tried to take her to the principal's office for using the elevator at school, she had tried to explain to the teacher that she had a heart defect; but he hadn't believed her. Another friend talked about girls in Gym class who would say how they wished they had a heart defect so they wouldn't have to run the mile. We all shook our heads in disbelief. "They wouldn't want our lives if they had to take 40 pills a day, get a pacemaker, need a transplant, miss a whole semester of school and be locked up in a hospital room for hours on end." I told them and we all agreed.

We talked about how we consider ourselves lucky. We are lucky because we were born in a time where medical technology was growing and becoming better and better each day, keeping us alive. We also agreed that we are lucky to have heart defects. Strange, I know. But we all feel that having CHD makes us more accepting, understanding, loving and appreciative of life. We all agreed that we wouldn't want to be normal teens because we fear that we may not be as understanding and accepting of others. We all know what it's like to be different and we wouldn't want to cause anyone the pain we have had in our lives just because people don’t understand. Two of the friends from camp were once normal teens before they found out they had a heart defect. One ended up getting a transplant and the other now has a pacemaker/defibulator. They both said that they appreciate life so much more now that they know how fast it can all vanish.

I have grown up with these kids. We have all been there for each other through the hard times, because we all know what it's like to go through what we go through. I know that if I ever need someone to talk to, or a shoulder to cry on; the kids from camp will be there for me. We are a family. We are all there for one another. We are all supportive. We all care for one another. We all love each other. This is my camp family and I love them so much.

Love,
Becca

The Word Retard

Hi Everyone, I just got off of the phone with a friend that I have known since first grade, we will call him Fred. We started to debate politics (bad idea, I know.) and my friend made it clear that he does not agree with Obama. He explained to me: "Obama decided that he would just start printing out more money, which doesn't help our economy; instead it just makes things worse because it brings down the value of the dollar. Did he not take econ? Is he retarded?"

While we had been debating a while on the health care bill, and I explained to him that he has no idea what its like to be sick and not be able to get the necessary medications needed in order to even live; let alone be able to work. My friend, I believe came to some realization about the health care system and how it does need something to be done (we just disagree on ways to get there.). When I kindly asked him not to use the word retard, he refused to see my reasoning behind it.

"The word retard means to be slow or slow down. So if I say 'I'm retarding my car.' it does not mean it in a mean way." He explained to me, in which I replied.
"Correct, but you and the rest of society don't use the word retard in that sense. You use it in the sense of dumb, stupid, moronic and idiotic which all have a negative connotation, therefor the word retard has a negative meaning and is hurtful."
"But Becca, I didn't mean it in a bad. I was simply asking if he was retarded."
"You could've said 'Does he have a learning disability? Is he mentally handicapped?'" I tried to explain to my friend. "If you were to take out the word retard and replace it with another word, what word would you have used?"
"Stupid."
"My point exactly." I explained to Fred softly.
"But its not a bad word. The meaning behind a word makes the word bad." Fred said to me.
"Would you use the 'N-Word' Or chink? What about faggot?" I asked him (Excuse my language and I mean no offense by what I said.). "The word nigger was actually based off of where the person was from." My friend tried to trip me up.
(Not sure if he was correct about the fact he presented, I decided that for arguments sake and incase he was right, I would go with it.) "Alright, but then the connotation was changed to be a degrading and racist one. So, do you use that word?" I asked him once more.
"No."
"Exact same reason you shouldn't use the word retard. While the origin of the word may not have been offensive in the beginning, it is now offensive and demeaning." I told my friend. I then said to him after a few moments of silence; "Fred, I know that you are a kind, caring, loving and accepting human being; I just want your words to reflect the type of person I know that you are."

Fred didn't say much after that, except that he thinks America has bigger and more important problems than the connotation behind words. And while I agree that there are life and death matters that are going on at this very moment, I explained to him that people can multi-task. We can help get the country back on it's feet while being loving, kind and accepting towards those who are different.