Having An Invisible Illness Makes People Think I'm A Scammer

The other day, my sister and I went to the mall so she could buy some new shoes. I pulled into a handicap parking spot and saw that there was a young couple in the spot next to us - one that was no a handicap parking spot. I chuckled and told my sister, "How much you wanna bet they think I shouldn't be parking here?" She climbed out of the car and I reached over to open my glove compartment where I keep my placard. 

Just as I finished putting the placard up, the man rolled down his window and yelled out at my sister who was outside the car by now, "Scammers!" He had a smile on his face and he most likely expected my sister and I to laugh and confess that we borrowed my grandma's handicap placard. I was working on getting out of the car when my sister corrected him with, "Actually, she does need it. She has a congenital heart defect." The women beside the man said something along the lines of: "Oh, we take that back then." And the man mumbled an agreement. 

I posted this story on Facebook and sadly, several heart moms who have had rude comments about parking in a handicap parking spot when their child looks so healthy. My sister, I hope, taught this couple that you can't look at someone and be able to tell if they are sick or handicapped or not.Looking at me, you'd never know that I've had 4 open heart surgueries, have a pacemaker/ICD, take 45 pills a day, sleep with oxygen at night and some day need a heart-lung transplant. But this man assumed that just because I look healthy - I must be. Big mistake and it made him look ( and probably feel as well) stupid for his comments. 

 My sister had the idea that I should make a small business card that explains my condition and gives them a site to find out more about my illness; so when people make comments about how I shouldn't be parking in a handicap parking spot or even give me a certain look (which they do quite a lot!), I can politely hand them a card to help remind them that there are illnesses that you can't see. Just because I don't look handicap doesn't mean I'm not. 

So please, before you yell at someone that they are a scammer for parking in a handicap parking spot or even making a comment about how someone is lazy for using the elevator (which has happened to me as well in high school!), remember that they could have an invisible illness. And if anyone ever makes rude comments concerning the fact that, "you don't look handicapped enough to be parking there." or something along those lines - feel free to politely explain to them what your health issues are. 

Hope and Love,

Becca 

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 

The Siblings Series - How to Talk to Them

A few months ago, a mom asked me on Twitter to write about strategies or tips for raising siblings of kids with CHD. I thought that this several part series could also be applied to siblings of a child with any sort of special needs. I decided that the first post for this series would center around how to tell the sibling about their siblings needs, health or an upcoming procedure.

• When explaining to your child about another child's health - keep their age in mind. Words you use to describe a feeding tube will be different for a 5 year old than the words you use for a 15 year old. And the comprehension will differ based off of their age. 
• When my niece who is 4 first asked me about my scar, I simply told her, "My heart doesn't work like yours, so the doctors had to fix it." But if a 16 year old were to ask me, I'd tell them, "I have a heart defect, so I had to have surgery to try and make my heart work more effiencently." 

• If the child who has the special needs or health concerns is old enough and comfortble with it - let them sit in on the conversation and answer questions that their siblings have. 
• I've found that in my experience, this opens up the relationship. It lets the healthy sibling know that the sibling with special needs is open to discussing it, and having open conversations between siblings can be a good thing. 

• If your child is having a procedure, and it is a surgery that has a lot of risks involved - before you decide what to tell your siblings think about their age and comprehension.
• A 6 year old doesn't need to know that her older sister only has a 20% chance of surviving the surgery.While a 19 year old sibling may ask you to tell them everything and hold nothing back. 
• As a parent you  might feel guilty for lying or giving false hope. But you may also feel bad that you laid everything out so clear and feel as if you put too much stress onto another sibling's shoulders. 
• If you are in pediatric hospital, I would highly suggest you ask for a Child Life Specialist. They are trained to help explain things to kids and teens in words that they will understand but they are also there to help comfort and reassure. 

• So after all is said and done and the sibling comes home from the hospital - how do you explain to the other siblings that just because their brother is back home doesn't mean he is 100% better? 
• Explain to the sibling in terms that they will understand that their sibling is still healing and just needs some more time before they feel 100% better. 
• When the child with special needs or health issues gets back to "normal", then treat them as such, so that the other siblings will see that they can do the same as well. 
• However - remind the sibling (if they need to be reminded) that just because the child with special needs or health issues looks "normal" and for the most part acts "normal" that they need to keep in mind that they can't expect them to be exactly like themselves. For example, my family treats me like all the other siblings I have. So when we go some place and we have to do a lot of walking, sometimes members of my family (even my dad!) forget that I have to walk slower and take more breaks. So I just remind them with a simple, "Hey, can we slow down?" It's a simple way that reminds them of my needs but doesn't make a big deal out of it. 

If any of you have any suggestion for one another or have a question that other readers could help you answer or figure out - please comment below. It would be a great way to meet other parents of kids who have special needs or health issues, and it would be a great way to get some techniques or ideas from other parents!

Hope and Love,

Becca 

Disclaimer: I am in no way a specialist. What I say is pure opinion based off of my own experience with my family and my 13 siblings. What works for some families may not work for yours, so please feel free to disregard anything I say that you don't think would work well for you or your family. 

Wonderful Words Wednesday

Yes - another Martin Luther King Jr. quote! This one is probably my all time favorite and it is so true. 

"Darkness cannot drive out darkness: only light can do that." It makes sense. How can you make the world a better place by using darkness to get rid of it? You can't. If you want the world to be a brighter and better place, you have to be brighter than it is now. And no matter what - you cannot let the world put out your light. No matter how dark it is and even if you feel like your light isn't making it any better - you have to keep going. It will make a difference and people will soon follow your lead - lighting their their own candles and helping you get rid of the darkness. 
This part reminds me of a song called 'Go Light Your World' (Which I posted here for Music Monday!)  My favorite lyrics from this song is this: 

"There is a Spirit who brings a fire
Ignites a candle and makes His home
So carry your candle, run to the darkness
Seek out the helpless, confused and torn
Hold out your candle for all to see it 
Take your candle, and go light your world"                                                                                                                                 

So be the Spirit who takes their candles and lights their world. 

"Hate cannot drive out hate: only love can do that." People talk about how they want the world to be more loving, understanding and accepting. And yet they are prejudice against those who are different or don't fit into what they consider to be acceptable. How can you say you are all about love if you are spreading hate with your words and your actions? 

Darkness is anything that is bad. Cruelty, prejudice, suffering, pain... the list goes on. I think Martin Luther King Jr. was making the statement that hate is part of darkness. Light is anything positive. Acceptance, helping, supporting one another, being understanding... the list goes on. Love is a part of light. If you want to get rid of the darkness in this world and the hate in this world, you need to use love and light. You need to use acceptance, support, being understanding and all the other positive ways you can treat people if you want to get rid of darkness and hate. 

Hope and Love,
Becca 

Liebster Award

I know that usually on Monday's, I post inspirational music. But today I decided to post blogs that I find inspirational. My dear friend nominated me for what is called a Liebster Award and now as part of the idea of Liebster, it is my turn to nominate a few blogs that I think are outstanding, inspirational and helping to make a positive change in the world. 

If you are nominated please do the following things:

• Please copy and paste these questions onto your blog (in a new post) and answer them. 

• Nominate 3 - 5 up and coming blogs that you love to read. You can not nominate the person who nominated you. 

• Notify your nominees and provide a link back to your post. 

• Post the link to their blog on a post (much like I will be doing below) 

• When you make your own post, you must create 11 questions for the nominees to answer on their blog 

So here are the questions that my friend asked me to answer:
1.) What are you wearing right now? 
Long skinny jeans and a lace crop top over a pink tank top. 

2.) Why did you decide to start a blog?
I wanted to help raise awareness for CHD and PH along with letting others know that they are not alone in their struggles. 

3.) What is one thing about yourself that you consider interesting?
My taste in music is pretty interesting. Or so I've been told. 

4.) What is one thing that you want more than anything in the world?
I want people to start being kinder and more accepting of one another. 

5.) What is your favorite pastime?
Ooh that's a hard one. I love reading, writing and signing to music. 


6.)What is your favorite book?
 I can't pick just one. But Nancy Drew and The Magic Treehouse series is what sparked my love for reading when I was younger. Now I love The Divergent Trilogy, anything written by John Grisham, Sue Grafton and Harlan Coben. ;">

7.) If you could meet one historical figure, who would it be?
Martin Luther King Jr. 

8.) What was the last thing you ate?
Spaghetti! 

9.) I'm running out of questions...what's your favorite word?
Acceptance. 

10.) What is your favorite food?;Steak and mashed potatoes. 
11.) What is one thing you have never learned but would like to?
I'd love to learn how to do a proper dive into water. I always do a belly-flop every time I try. 



Now as for my nominations I have nominated the following blogs: 

Shelby at: http://teenagehearttransplant.blogspot.com Shelby and I met while at a camp for kids with heart defects. She is outgoing, loving and has an amazing sense of humor. She has had 2 heart transplants so far and her outlook on life is a bright one that always makes me smile. 

Mrs. Shrader (She is a mom of one my friends so I don't call her by her first name!) at: http://theblessingcounter.blogspot.com/ 
Mrs. Shrader has 4 kids all together and runs an amazing blog all about their life. Two of her kids have special needs so she has an amazing insight into the world of being a parent to kids with special needs. Whenever I see her though she never complains and is always full of happiness. I don't know how she does it, but she always seems to be looking at the bright side of things. 

And last but not least: Show Hope at http://blog.showhope.org/As someone who is adopted and comes from a large adopted family (There are 14 of us! And some from other countries!), I really appreciate what this blog does. It mainly focuses on raising awareness about adopting from China in hopes that more people will, but it talks about adoption in general as well - speaking about the amazing stories of hope and how adoption has changed people's lives. It certainly has not only changed my life, but has saved it as well. So thank you Show Hope for helping raise awareness to adoption! 
So for all of you who have been nominated, here are the questions I'd like you to answer on your own blog! 

1. What made you want to start a blog? 
2. How long have you been blogging for? 
3. What is one thing you would change about this world if you could? 
4. Who in your life inspires you or helps motivate you to keep going? 
5. What is one misconception about the topic you write about that you'd like to clear up? 
6. How has running a blog changed your life? 
7. If someone were to ask you what you hope to accomplish with your blog, what would you tell them? 
8. Can you be found on Twitter for your readers to follow? 

Now for some random questions!

1. What is your favorite color? 
2. Do you prefer chocolate or vanilla ice cream?
3. Pepsi or Coke? 

Thanks again to my dear friend for the nomination and I hope you guys check out some of the blogs I've talked about. They are amazing, insightful and written by wonderful people!
Hope and Love,
Becca 

The Spring Break Curse

Hey Readers,

It seems as if the past 2 Spring Breaks I've had do not go my way, at all. Last year when I got the battery of my pacemaker/defibulator replaced over Spring Break, I was supposed to be home in 2 days or so. Well things did not go as planned and long story short, I had complications the moment they put me under anesthesia and afterwards I was having a new kind of arrhythmia problem. 

Fast forward to this Spring Break, I was supposed to have a camp out tonight in my backyard and possibly see a movie tomorrow night with a bunch of friends. But my health really likes getting in the way of my plans. Saturday I was starting to not feel well at all, I ached everywhere and just felt exhausted. So I went to bed early that night and when I woke up on Sunday I felt even worse, with a temperature, stuffy nose and what I call "junky" lungs. I had a performance for my Sign Language group on Sunday and despite having a fever and feeling awful, I went, not wanting to let my group down. Now here I am on a Thursday - still sick. My lungs are feeling better but I still have a stuffed up nose and a sinus headache. I sadly had to re-schedule the camping in my backyard party to next Friday, which I hope people will still be able to attend. 

My mom and I both agree that it is better that I get sick over Spring Break, so I can get better in time for school and not miss any. But still, it'd be nice if I'd be able to have at least one Spring Break while I'm in a college that is fun and filled with friends and I hanging out. My goal for next Spring Break, I just don't want to be sick during it! Just be a normal college student on Spring Break would be a great change!  

Hope and Love,

Becca 

Music Monday "Catch My Breath"

When I first heard this song, I was in the radio and I only heard the chorus before it ended. The chorus is what spoke to me the most and I immediately thought of my friends with CHD and the lung disease called Pulmonary Hypertension  and how we all at points in our life (maybe even daily!) struggle to catch our breaths. 

When I got home, I bought song on iTunes and listened it from start to finish. The very first verse is what spoke to me the most: "I don't wanna be left behind." There are times in my life, as I'm sure in others, that I have felt left behind because of my illness. People would forget that I can't keep up, and they'd run ahead without me. Or I'd miss out on some amazing and fun things that my friends and family did because I was stuck in the hospital. There are times when I have felt left behind and I worry when I'm in the hospital, will I ever be able to make up for lost time? I can't get back all those months spent in a hospital bed away from home, and that is what stinks the most about being "left behind." 

But I think this song can relate to even healthy people. There are times in everyone's life where life gets overwhelming and you have to take a break, catch your breath, and then continue on your way. So here is my advice to you in the words of Kelly Clarkson: catch you breath, no one can hold you back and don't let them get you down. No matter what it is, catch your breath, don't hold back and keep going. 

"Catch My Breath" Kelly Clarkson 

I don't wanna be left behind
 Distance was a friend of mine
Catching breath in a web of lies
Shadowboxing the other half
Learning how to reactI've spent most of my time
Catching my breath, letting it go, turning my cheek for the sake of the show
Now that you know, this is my life, I won't be told it's supposed to be right
Catch my breath, no one can hold me back, I ain't got time for that
Catch my breath, won't let them get me down, it's all so simple now
Addicted to the love I found
Heavy heart, now a weightless cloud
Making time for the ones that count
I'll spend the rest of my timeLaughing hard with the windows down
Leaving footprints all over town
Keeping faith kinda comes around
I'll spent the rest of my life
Catching my breath, letting it go, turning my cheek for the sake of the show
Now that you know, this is my life, I won't be told it's supposed to be right
Catch my breath, no one can hold me back, I ain't got time for that
Catch my breath, won't let them get me down, it's all so simple now 
You helped me see
The beauty in everything
Catching my breath, letting it go, turning my cheek for the sake of the show
Now that you know, this is my life, I won't be told it's supposed to be right
Catching my breath, letting it go, turning my cheek for the sake of this show
Now that you know, this is my life, I won't be told what's supposed to be right
Catch my breath!
Catch my breath, no one can hold me back, I ain't got time for that
Catch my breath, won't let them get me down, it's all so simple now (it's all so simple now!)
Catching my breath, letting it go, turning my cheek for the sake of the show
Now that you know, this is my life, I won't be told it's supposed to be right
Catch my breath, no one can hold me back, I ain't got time for that
Catch my breath, won't let them get me down, it's all so simple now
I've spent most of my life
Riding waves, playing acrobat

Hope and Love,
Becca 

One More Thing That I Can't Do, But That's Okay

Throughout my life, my health has taken away things in my life that other healthy people could do. In elementary school I discovered that I couldn’t keep up with my classmates at recess. Later in elementary school when all my friends were going off to summer camp, I couldn’t because of the high elevation. In middle school they wanted to put in a pacemaker and defibulator along with putting me on a no caffeine diet and a low salt diet. This meant another surgery, another scar on my body, another thing that made me different. All of these things, I fought against. But I noticed that there was a cycle. I gave myself a day or two to cry, scream, yell about how life isn’t fair and tell my parents that I just wanted to be normal. Then after I got it all out, I sucked it up and I did what I knew I had to do.

Well yet another thing came up on Monday that I was not able to do. My friends at school are all going away on a three day camping trip for Spring Break. Now I am going to be very honest with you, I don’t think I would like camping. Not one bit. I like sleeping in a comfy warm bed.  They were going to be sleeping in tents. I like having heating and a running toilet. They would have a camp fire and a place behind the bushes. But that isn’t why I wanted to go. At first all I could see is that this group of people was going to be having fun and making memories… and I wouldn’t be a part of it. And that’s what made me so upset. I cried, I yelled at my mom that she didn’t understand and then I called some of my heart friends and I vented to them, knowing they’d understand.

Well by Tuesday, my friends at school were planning on all pitching in to buy me a generator so I could go up and keep my oxygen charged constantly since I would need that since it is above 3,000 feet. I was ecstatic. I would be a part of these memories. I’d be a normal college kid… with the exception of the oxygen. But then I had to think about my health and how realistic would this trip be for me? I went up to the mountains once in my life, and it was to stay at a resort. A resort so I didn’t have to do anything strenuous! I never had to hike, I go a comfy bed, I had oxygen plugged in constantly, and had a cabin that had great heating. But at the end of the trip, I was exhausted. So what would real camping do to me? I’d be out of commission for a week if not more and that would definitely affect my schooling. On top of that, how much fun would I have in the freezing cold while everyone went off hiking and I had to stay at the camp site?

I came to the conclusion with my parents that it would not be a smart idea for me to go. It’s sad to me, and if I had decided this a few days ago – I’d be a mess. But over the years I realized that I need a day or two to be absolutely miserable and complain about my health, then I am able to be calm and think rationally and accept that this is the way my life is and make the best out of it. So I have. The day after my friends get back from camping, they will be “glamping” which is glamorous camping in my acre backyard. Parents have agreed to it and they even offered to put up our big projector so we can watch movies all night and we might rent a popcorn machine to use as well.

I could tell that during my sobbing episode, the people who heard me complain, especially my parents felt awful for me. I know that my dad and my mom would do anything to make me feel as normal. My dad had even thought about taking time off of work, following me up there and staying at a hotel nearby just in case anything happened. And then my friends from school scrambled to try and find a camp site that had electricity and when they couldn’t, they all offered to pitch in money to rent a generator just so I could go.

There are going to be things in my life and I’m sure many Adults with CHD’s lives that we just can’t do. No matter how much we want to. And it stinks. And I hate it. But this is our life and we can go with what life has given us, or put up a fight and get exhausted over it. Do I wish I could go camping? Yeah, I do. But I found a compromise. I may not be involved in the memories at the camping trip. But when they all come over and spend the night at my place, those will be memories that I will be part of. No one ever gets everything they want, whether you are healthy or not. And that is something I had to remind myself. And along with that, I have the comfort of knowing that I have so many people in my life who were willing to drop everything and try to make it so I could feel normal. With those types of people in my life, how can I be anything but happy? 

Hope and Love,

Becca 

That Awkward Moment When....

Hey guys,

Sorry I am just now realizing this, but the picture of a quote that I put up is not the of the same quote that I quoted. So I'm sorry. Here is the actual photo that I wanted to use. Sorry for the mix up! I went back to the original post and I have taken out the old photo and replaced it with the one below! 

Hope and Love,

Becca