Wonderful Words Wednesday

It was my senior year of high school when I got assigned a book to read that held the life philosophies of many. Some of them were famous, such as the person I am about to quote and others were teachers and college students from around the United States. The person whose life philosophy and views I absolutely adored was not someone I expected to. His name was Albert Einstein. I expected some long complicated essay that this man wrote about his philosophy on life and how to live life. But instead I got a beautifully, well written essay that I and average people could understand. And the best of all, he was open minded about so many things. I expected this man to say he had all the answers because he was a genius  but he was more than comfortable with saying 'Hey I don't know everything, but I like to believe that...' 

So when I went out on a search for a quote to use this week, I knew I wanted to use one of his many inspirational quotes and I found this one. "In the middle of difficulty lies opportunity." It's normal to get into a funk and see only the negative, it's pretty much an automatic response. But I love that Einstein reminds us that even with hard times and troubles, there can be opportunity and even success. 

Applying this quote to my life, I realized that even though there are things about having CHD and PH that are awful and that I hate, I have gotten to do things, meet people and have experiences that I never would have had if I wasn't born with these illnesses. Me being sick, has given me the opportunity to learn ASL, get adopted into the wonderful family I've been adopted into, go to camp and make life long friends, fall in love with writing as a coping mechanism and so much more. Yes being chronically or terminally ill with CHD or any other illnesses gives us difficulties. But it can also give us opportunities. When you're feeling down, remember the opportunities being sick has given you.

What opportunities has your illness given you? 

What opportunities has the illness of a loved one given them or you? 

Hope and Love,

Becca

The Emotional Roller Coaster We Go Through – Knowing When it MIGHT Be The End

This is part 2 of "The Emotional Roller Coaster We Go Through" blog post series that a Twitter follower of mine asked me to cover. 

Surgeries, procedures and hospital stays seldom happen in an emergency. Most often, there are scenarios where family and patients know that in the future, there will be a surgery or some sort of hospital stay. And while in theory, having time to cope and deal with the inedible is a good thing, it doesn't always feel like it is for many. 

Knowing that in an X number of days you or someone you love will be put under for a risky procedure or surgery tends to be a double edge sword. Yes it gives people time to prepare and cope with the idea of what is going to happen, but it also gives them a time limit. I am well aware as I'm sure many patients who are old enough to be aware, and their families are that the day of surgery or a risky procedure could very well be their last. Some people say that they'd like to know how long they have left to live... I don't. I've had 4 open heart surgeries, 2 surgeries for my pacemaker/defibulator and over 20 heart caths. Due to complications in the past, even in "routine" procedures such as heart caths, I am aware well aware that I may not live through them. That I may not be able to come off the ventilator. Or that there could be complications. I have in some way been told how long I might have left to live and it does not empower me. It does not make me feel free or liberated. It terrifies me. And I'm sure it's the same for many patients and families of loved ones who are in the similar situation. 

I think the difference between my possible time limit and others who are given a time limit due to an illness that is too far long is that, my (and others like me) situation has hope. Those who are given an X number of months or years left to live are typically given those because there is no hope for a cure or treatment working. But me and many others with CHD, our time limit comes with hope. The reason we may die is for the same reason we may live. Open heart surgery. We know that without it, we would die eventually. But with it, we could either live for longer or die because of it as well. So while there is an excitement and hope that our lives will improve due to this surgery, there is that fear and knowing that we could very well possibly die from it as well. And even though you don't want to do it, you know deep down, you have to.

Would you want to know how much time you had left? 
How do you cope with the idea of another procedure or surgery? 

Hope and Love,
Becca

Next week I will cover the Preparing part of "The Emotional Roller Coaster We Go Through".

Wonderful Words Wednesday - MLK Quote

Monday was MLK, a day to remember and honor a wonderful man who paved the way for so many to have equal rights. One of his more favorite quotes starts off with, "I have a dream." but this quote may not be as well known, but it is beautiful and as always has a beautiful meaning. This quote reads, "Life's most persistent and urgent question is, what are you doing for others?" How are you helping others? What are you doing to make this world better for others? I believe that remembering and honor MLK should not be done on just one day, or with just one ceremony, parade or concert. But it should be done everyday, in the subtle but kind ways that MLK would want us to do. Showing someone kindness who otherwise may not have someone be so nice to them could change their whole day. Don't ever underestimate the power of a smile, a kind word or a helping hand to help pull someone back up. Let us remember and honor Martin Luther King Jr. every day by doing something for someone else, no matter how small it may seem, it can make a world of a difference to them. 

What are you doing for others? 

Hope and Love,

Becca 

The Emotional Roller Coaster We Go Through - The Grieving Cycle

When I asked my followers on Twitter, what topics they'd like me to write about someone asked me to write about the emotional roller coaster that parents, siblings and patients go through when someone they love have a chronic or terminal illness. There is something that many people call 'The Grief Cycle' and I think many of the phases in that cycle applies to what it is like to live with a chronic/terminal illness, or having someone you love live with one. 

I am breaking this topic about 'The Emotional Roller Coaster We Go Through' up into several different posts. 

And for some people who find out later in life about being sick, grieving the loss of their once normal life happens. Someone asked me once, if I ever had to grieve about my illness, and what it has taken from me. Not in a big way, like some people. But in some ways I have. 

See, I have known from a young age that I was not normal and that my life would never be normal. I didn't like it, in fact I hated it. I had convinced myself that God hated me and I had done something wrong to have this happen to me. But I never knew anything different than that. I never had anything to miss. I didn't have a normal life to remember or to grieve over losing. But I did grieve over the fact that I would never know what normal was. I grieved over the fact that my body would never look normal.

Now I'm going to admit, I love roller coasters. I am a thrill seeker, an adrenaline junkie. But one day, that was taken away from me. I was thirteen years old. I knew I loved roller coasters. So this was something new to me. Before, the things that were denied me, like being able to have my own child or being able to walk up a flight of stairs easily, I never experienced, I never knew. So I didn't have anything but an idea to miss. But this, I had the real experience to miss. So when my doctors said, no more roller coasters, I grieved the loss of that. Yes I understand in hindsight that it is nothing compared to what so many people have had to grieve over and I have gotten past that sadness in my life. 

I'll be the first to tell you, in my process of grieving, I got angry, I got depressed and I did bargain with my doctors. I was angry at them at first. 

It was their fault I couldn't go on roller coasters. 

They should've done more to make me healthy enough to ride them. 

I took it out on them, not gonna lie. I was rude, I blamed them and I let them know that I was not happy with them. And I got depressed. As a young teen, I saw it as the end of the world. And then I started to bargaining. I'd ask, 'Well why don't you just give me the transplant now so I can ride a roller coaster?' even though transplants is just trading out one problem for another. Then I'd ask, 'What if I only rode roller coasters that I've been on before, since I know they haven't killed me yet?' 

They didn't budge and I got angry at them again. 

But then as I matured, I realized that roller coasters weren't worth losing my life over. And I realized that just because they were the bearer of bad news, doesn't mean it's their fault. I, and I'm sure many people when they get sick, want answers. We want something or someone to blame. And I blamed my doctors for this loss, even though I knew it wasn't their fault. 

If you're a parent of a child who has a chronic illness or a terminal one, and they are going through this grieving processes, I want you to know that therapy, camps for people who have similar illnesses, support groups and counseling, are out there that can help you and your child get through this. I can personally say though, it would always bug me, as I'm sure it does others; when someone tells me to just 'Get over it'. Remember, what might seem minuscule to you, may not be to someone else. Like me losing roller coasters, may not seem like a lot to you, but it was to me at the time. So please remember that on top of dealing with doctor visits, taking medicines, going through procedures, dealing with statistics and then trying to go about daily life, someone who has a chronic or terminal illness is allowed to have moments of grief over things that may not seem all that important to you. 

Hope and Love,

Becca 

What have you had to grieve over? 

How did you deal with it? 

The Reason Why I Hate Being Sick - I Wish It Was Simple

When I was younger, around elementary school age, I hated having a heart condition and a lung disease. I hated it because I couldn't run or keep up with the other kids at recess. I hated it because during recess, I wasn't able to play kick ball or basketball. 

Then I got a bit older, into the pre-teen stage and I hated having a heart condition and a lung disease for a different reason. I hated how my scar looked. I hated the stares I would get. I felt ugly. I felt like I wasn't girly enough or feminine enough because of the scar in the middle of my chest. I felt like no guy would ever find me attractive because of the big pink scar. I hated having CHD and PH because of the scars. 

Then I got a little older, and I was able to realize that my scar didn't make me ugly nor was my scar ugly. But I started to hate having CHD and PH for a different reason. No more roller coasters and a low salt diet. I was so angry at my doctor. I blamed him for taking those things away from me. Still to this day, I go to a theme park or a carnival and there is a pang of sadness when I see other people screaming their heads off on a roller coaster and I keep thinking 'Someday... someday when I get my transplant, I'll be able to do that again.' 

But I have grown up since then and I no longer hate having CHD and PH for those reasons. Now my reasoning for hating having CHD and PH are more realistic, mature and very scary. Insurance. I hate having CHD and PH because of the battle with the insurance company to get my doctor visits approved. I hate having CHD and PH because of all the work my mom and dad have to do just to get the insurance company to approve one doctor visit. I hate having these illnesses because I worry what it might do to my dad's small business if he decides to put me on his own insurance plan. There are times when I miss the old reasons why I hated being sick. Looking back now, they were so much simpler and less daunting than insurance. 

There is a part of me that wishes I was not an adult and instead a kid once more, so I wouldn't have to worry or even be aware of the insurance problems. But I'm an adult now and I am aware of the insurance problems, and it terrifies me. 

Hope and Love,

Becca

What are the reasons you hate having a chronic or terminal illness?

What are the reasons why you hate that your child has a chronic or terminal illness? 

CHD Awareness Week Alert!

After asking my Twitter follows what topics they'd like to read about, I got some great ideas! Today I want to let you all know about Congenital Heart Defect (CHD) Awareness Week that is in February. You might be thinking, "Why so early?" Well like my mom always says, "If you plan ahead, you won't have to scramble in the end." So I am letting you all know now so you can get a head start on setting up fundraising events at your school, job and in the community. Starting February 7th and going all the way to Valentine's Day (How appropriate  a holiday that uses a heart as it's symbol!) is the week that CHD Awareness is scheduled for. 

If you or a loved one you know has CHD and want to help raise awareness during CHD Awareness week or any other time, here are some ideas! 

• Buy and wear a CHD T-Shirt, hat, jackets etc. You can buy a shirt from: Mended Little Hearts  - they have groups all over the US so you can find a group and a shirt that is from a state or city near you!
• Buy and wear a Lego Heart Necklace from Mended Little Hearts of Phoenix's website, here. (Pictured below) 

• If you are like me and are in the Phoenix area (Or Arizona in general) you can buy some clothing that raises awareness from: Mended Little Hearts of Phoenix 
• If you cannot buy any of these items, just wear a red t-shirt, jacket or anything else red! 

As for raising money for a CHD group that you'd like to donate to, here are some ideas: 

• Make necklaces or bracelets using red and blue beads that symbolize the hard time CHD hearts can have make un-oxygenation blood oxygenated - and then sell them at child's school, work and other places around the community
• Write a letter to a local business telling your CHD story and ask them donate money to the CHD cause 
• If you have a fundraising event, make a poster board that has pictures of CHD kids who look healthy, CHD kids who don't look healthy and then "normal" healthy kids - and ask the people who pass by if they can tell who has CHD. It's a great way to opening up the conversation that you can't always tell by looking at a person if they have CHD. 
• If you have fundraising event, you could also show X-Rays of what a normal heart looks like vs. a CHD heart - to help show the difference and catch people's eye! 
• Ask your child's school if they could sent out an e-mail to the parents in the school sharing your CHD story with a link to where they can donate money if they are interested in it 

These are just some ideas that you can do when trying to raise awareness and/or money. If any of you have any more ideas that you'd like to share with us, please comment below and share the ideas with everyone. Lets get out there during the week of February 7th to the 14th and raise awareness!

A special thanks to @CHD_UK for giving me the idea! If you are in the UK and have CHD or love someone who has CHD, check them out on Twitter and on their website: www.congenital-heart-defects.co.uk/ 

Hope and Love,

Becca 

Lessons from Les Mis

Originally a book that was then made into a Broadway musical has now been transformed into a beautiful motion picture that I would recommend everyone should see, even if you don't like musicals. The stories that are in this film are heart wrenching and thought provoking in so many ways. The conditions that these people lived in, the lack of rights and yet they were able to care for others and want to change the world around them. 

(I will give away a few parts of the story, but not the whole plot!) 

For starters, the main character Jean Valjean was sentenced to serving a 19 year prison sentence as a prisoners for stealing a loaf of bread for his starving nephew. Jean had tried to run away from the horrid prison where he was treated as less than human in unspeakable conditions, which had given him more years to his sentence. But lets be honest, if you were treated as practically a slave and forced to pull those massive ships into the docks, just because you tried to get food for your starving nephew... who wouldn't try to run away? Would you honestly let yourself be treated as less than a human instead of trying to get out so you can help your family survive? 

He was released on parole and tried to find work and shelter, but no one would have an ex-con live in their homes or work for them. No one stopped to ask him his story and find the reason why he had been in jail. They saw on his papers that he was a dangerous man and shut him out. Except for one man, a preist could've turned him in for trying to steal his valuables. But instead this kind and compassionate man saw the good in him and told him to do something with his life. To go and change. To be the person he wants to be. This one man who took the chance to get to know him and was accepting and understanding of him changed his whole life. One person who was kind, had an open mind and was willing to see beyond his past was able to help him realize his full potential. How many of us have been able to put aside judgement of others and see the good in them?  How many of us would look past the stereotype that someone has been given and welcome them into our homes and our hearts? How many times have we jumped to conclusions about someone and shut them out of our lives without even giving them a chance? 

A women, about eight years later works for Jean in a factory, trying to send money to her daughter that she had out of wedlock. The women at this factory put up with harsh conditions, poor pay and a man who is similar to what today would be called a manager's position who touches them inappropriately  A whole verse in a song is dedicated to how they have to put up with so they can put food on the table and clothes on the backs of their children. No women's rights. No worker rights. Horrible working conditions. And horrible pay. It's horrific to think that anyone has ever had to work in conditions like these. Horrible to think that a woman felt the need to do whatever the bosses or managers wanted or else they could be tossed out onto the streets without any thought. 

And that is what Fantine has happen to her, tossed out of the job just because the man discovered she had a baby that she was sending money to. Needing money to send back home, she turns to selling her body and even parts of her body such as teeth and hair. Working the streets, she is treated as less than. Those who have money don't even bother to pay attention to her or any of the other homeless people. Those with money see the homeless as something less than human. The homeless even sing out towards those who are more privileged singing these words: 

Look down and see the beggars at your feetLook down and show some mercy if you canLook down and see the sweepings of the streetLook down, look down,Upon your fellow man!

But no one does. They are not viewed as fellow men. They are not even viewed as human. Homeless were judged then just as they are now. 'It's their fault they are there.' 'They could get a job.' But Les Miserables has showed that it isn't always their fault. And just like the man named Jean, getting a job isn't always so easy when you have people who refuse to give you work because of how you look, where you're from or your past. How many times have you driven by a beggar on the street and actually looked at them? When was the last time you gave to a homeless shelter? When was the last time you worked at a soup kitchen?  Look upon your fellow men. 

There are many lessons that can come from this movie, and statements about society that people should really think hard about. But the last one I wanted to talk about was the men who took part in the Revolution. The whole city was supporting them, rallying together to prepare for the Revolution. But when the time came, most shut their doors on them and refused to help them. As men and young children died in the streets and the fighters for freedom asked for their neighbors to help, they were locked out of buildings and left to fend for themselves. Scared of getting killed themselves, scared of getting punished by the government for standing up against them, people who supported the cause did nothing to help those who were brave enough to fight the fight. I'm sure we all would like to think that if we were in that position, we would bravely risk our lives for the freedom these men fought to have. But how many of us really would? How many of us would have stood out in front of that huge army and risked our lives instead of finding shelter in our homes and waiting till the battle was over? How many of us would've opened up our doors to let the freedom fighters find refuge in our homes, even though we knew we would get killed for doing so? 

At the end of the movie, a song is played as all the men who lost their lives in the battle for Revolution stand together and then the theater goes silent as everyone's breath is taken away. A movie about friendship, second chances, fighting for freedom and young love takes everyone's breaths away. A movie that makes you realize just how far we have come in some aspects but still need to work on in others. So let's keep working on the things we need to change about in our world. Let us keep working on bringing acceptance into this world. Let us start with ourselves. How about our New Year's Resolutions focuses on being less judgmental of others, giving people a second chance and realizing that we are all human and we all deserve to be treated as such. 

In closing, I'd like to leave you with the last verse of the Les Mis Epilogue. 

Do you hear the people sing?

Lost in the valley of the night

It is the music of a people who are climbing to the light

For the wretched of the earth there is a flame that never dies

Even the darkest night will end and the sun will rise.

They will live again in freedom in the garden of the Lord

They will walk behind the ploughshed, the will put away the sword.

The chain will be broken and all men will have their reward!

Will you join in our crusade?

Who will be strong and stand with me?

Somewhere beyond the barricade is there a world you long to see?

Do you hear the people sing?

Say do you hear the distant drums

It is the future that they bring when tomorrow comes

Will you join in our crusade?

Who will be strong and stand with me?

Somewhere beyond the barricade is there a world you long to see?

Do you hear the people sing?

Say do you hear the distant drums?

It is the future that they bring when tomorrow comes! 

Tomorrow comes! 

Hope and Love,

Becca