Choices

 

Everyone at one point in their lives will have to/had to make those decisions that we don’t want to, that we didn’t really have a choice, that we wish we could of changed the outcome.  But that’s not an option.

It doesn’t matter if it’s something that you see everyday, something that you feel everyday, or something that you think about everyday.  It’s a choice that we had to make, to make our lives better, to make those around us happy, to do whatever it took to keep moving forward.

Our choices we make today have the potential to propel or to halt our futures the way we see them at that very moment.  It does not however have the power to change our past; and once that decision is made..it’s in the past.

It’s ok to feel pain, to feel defeated, to feel jealous, to feel helpless; but take that feeling and use it to feel freedom, to feel victorious, to feel rejuvenated, to feel alive. There is NOTHING we can do to change the past; all we have are our feelings that we have, our words we can say, and actions we can follow through with.

“Actions speak louder than words; let your words teach and your actions speak” – Anthony of Padua

Live, Laugh, Love….Always,

Nicole

Falling

When does it happen? 
The moment you know when you can’t look back. 
The moment when you have to take a different path. 
The moment when it feels like your whole world is falling beneath you. 
The moment you realize there isnothing  you can do about it.

Where do you go?
When you realize the you that you are isnt the you you want to be.
When you realize that you’ve hit a dead end.
When you realize that maybe everything you have done up until now wasnt worth the pain.
When you realize you’re lost and you’ve never tried to find your way.

What’s next?

Damned if you do

I’ve always believed that you receive what you put into the world, but how far does that really get you? I mean I’ve paid for the person’s food in front of me many times, but I have NEVER had my food paid for by someone else’s kindness.  Does that mean I should just stop paying for others? Should I start being selfish? I doubt that I would be able to just stop giving to others, I mean the point isn’t supposed to be that you receive something in return.  I’m a selfless person by nature and I always think that it’s always better to give than receive; my kindness sometimes becomes my weakness.

Being “good” has been rooted in me partly because of my upbringing but also because of my health conditions.  I’ve always been to scared to step outside of the “good” box and break rules.  When I was younger there was kindness all around me; during every doctor’s appointment, every hospitalization; and every time someone else was inconvenienced because of me I went out of my way to apologize and make up for it in any way I could.  I find it harder and harder as I grow up to keep the same mentality though. It might be because I no longer stand in the “good” box anymore, but I don’t stand in the “bad” box either. A lot of times I feel like I’m in limbo figuring out what I want to do, who I want to be, and how much risk am I willing to take to answer those questions. 

After everything is said and done I don’t think I’ve changed fundamentally as a person. I think with everything that has happened in my life I still believe that people will pay it forward and saying please and thank you can go a long ways. 

“The point is not to pay back kindness but to pass it on”.             -Julia Alvarez 

Live, laugh, love….Always, 

Nicole 

What do you see?

I hate you
But I love you

I despise you
But I adore you

Your anxiety is exhausting
But your belief is exhilarating

Your insecurities make you delicate
But your resilience makes you unbreakable

I’ve never fully understood you
But we have a connection that cannot be divided

I’ve spent all this time looking at you
But your beauty is still new to me

You’ve never complained to me
But I can see the fear that you never speak

You’ve always put a smile on for me
But I still see sadness in front of me

Please don’t turn away
Please do this for me
Please look back at the mirror
And tell me again what you see

CHD as a spectrum disorder?

It sounds crazy right? Well I was at my first pacemaker clinic appointment and I was talking to the lady about my first three weeks of having it and that I still wasn’t completely confident that I’d made the right decision.  She responded (along with many others) “you’re quite young to have a pacemaker, but I’m sure you’ll reap the benifits of it soon enough”.  In my last ‘rant’ (still I rise) I talked about how young adults with congenital heart disease have all different types of limitations and that we shouldn’t bind ourselves with them or by them.  I’ve been thinking about that blog post a lot, and even more so the Facebook post that inspired it.  I thought about it a bit, and when the pacemaker nurse and I were talking it hit me; CHD is like a spectrum disorder. Before the DSM-5 (Diagnostic and statistical manual of mental health disorders) there was Autism and Asperger’s.  If you had Aspergers that’s all you had, there was no measuring it, there was no “mild” case of Aspergers.  When the DSM-5 came out they went away with the term Asperger’s as it’s own separate syndrome and now it’s considered a mild form of Autism on the Autism spectrum.  Many people still use the term Asperger’s because society has an idea that there is a difference between Autism and Asperger Syndrome. In the mental health world it’s not it’s own disease now, and it too has many forms it can present itself in.

When this thought hit me in the pacemaker clinic it really did click.  I know that CHD itself is an umbrella that incompasses many diseases and disorders that all have their own name and their own problems physically.  But what if like many mental illnesses are, we treat it like it’s on a spectrum. Some CHD patients never have to have surgery, while others will be tied down to oxygen and restrictions their entire lives.  We are not meant to put CHD in a box, tape it up and ship it as a “welcome package”, we need to carefully select what we put in each box, and how much more one box will have in it compared to another.  With this I’m not saying some CHDers are “less” of a warrior than others; but some warriors need a little extra help.

If we as a community were to see these differences when it comes to the emotional and health of not only the patient but the families in the long run I think there would a lot less anguish.  As a young adult with CHD I think about what resources I wish were available when I was younger for my mom and myself; but I realized it would probably make me more worried and bitter than accepted.  It’s great that we have the internet to connect us with people that are “just like us” and parents “who are all going through the same thing” but that’s not reality, at least not completely.  I spoke on this in my last blog about the fine line between shouldn’t do and can’t do; but how do you explain to a child/teen who has CHD that they can’t do something while their friend (who also has CHD) can? You can’t say “because you have congenital heart disease”… what kind of argument is that? This scenario came around very often when I went to Boggy Creek Gang Camp (camp for kids with illnesses; I went to heart week) as a child/teen. There was no search engine that set limitations for us, we found them out ourselves and there were some achievements and bittersweet realizations that came from finding those things out on our own.  It was really great because we got to talk to each other about our defeats and our accomplishments;  while learning from one another.  I think with social media how it is we lose some of that connection, some of that honesty, and some of that personal defeat we feel.

I know I’m not the only one who has said something online or even in a text that I would never tell someone face to face; would you tell a parent not to let their kid do XYZ because your kid can’t face to face? I think it’s great that we as a CHD community can share ideas and inspiration that gets us through a bad day and small achievements that seem like milestones.  The internet has allowed us to box up CHD though, it’s in a little cute box that you can “like” and “share” while not really knowing what the box has inside it.  If we treat every case separately and everyone with CHD as an individual I don’t think that we would have so many teens/young adults/parents questioning if they are doing the right thing for themselves or their child.  Every single patient with CHD has a differently complexity of problems they deal with….EVERY SINGLE ONE…..so before you tell a mom of a sick child they should treat them with this or try this why don’t you just listen and learn?

In a generalized way many people who post about their problems on social media aren’t really looking for someone to reply with an answer; many people just want an outlet to vent to, someone who won’t judge the decisions they’ve made thus far, and if need be give them stories of personal experience. This is especially true for the parents/caregivers and the patients that have CHD.  We are not looking for you to tell us our decision was wrong and we should have done this, we are not looking for you to make us feel more broken because we feel a certain way, and we are not looking for people to be our doctors (we already have plenty of those….trust us).  We are looking for compassion, communication and sometimes personal accounts.  But please treat us like an individual; not just a patient with  HLHS, not just a patient with AVSD, not just a patient with CHD and not just a sick kid/teen/adult.  We all are on a spectrum where some have CHD more severe than others and we all deserve a chance to learn about where we fall in that spectrum as an individual and how that impacts us as a person.

“The greatest gift you can give to yourself is embracing all that you are unapologetically. The center of this beautiful embrace is individuality.”    -Unknown

Live, Laugh, Love…..Always,

Nicole

I know this is a little redundant of the last post but I wanted to go into more detail about certain things ^_^

 

Sometimes

I know what I feel
And what I say
get jumbled up
between my mouth
and my brain

I smile in knowing
even in my flaw
I am loved

Sometimes however
it’s not that way
everything isn’t as easy
as you think

Sometimes those words
are like punches to the gut
verbal vomit that won’t stop

Sometimes the noise
is more deafening
than the silence

Sometimes what people don’t say
will say everything for them
they won’t speak the truth
and hold back to protect themselves

Sometimes everything won’t be ok
and sometimes it’s ok
to just live in the moment
day by day

Still I Rise

Let the rambling begin:

When someone underestimates the abilities of another person, aren’t they just looking for an outlet to push their own failures onto?  I mean if someone said to me “You’ll never be able to get an A on that test” is it because they truly beleive I don’t have the mental capacity to achieve an A or is it because they couldn’t or don’t beleive they can.  Would it be that incomprehensible that someone can do something you can’t, and the question is; did you even try?

I see this in everyday life, and it doesn’t just happen to me or to people I know, it’s almost like human nature.  I think that’s why I try and be someone who walks with others and not above them.  I think that’s why I don’t know what to say when someone says they look up to me; look up to the strength and resilience I have.  I downplay it and step down to look at them directly in the eyes to show them that where there is strength there is weakness and where there is resilience there is self doubt.

It’s important to want to test your limits and maybe, just maybe reach for something that you never thought could be in your grasp.  How do you know when it’s too far away? When do you tell yourself to just give up? But first you must ask “who gave me these limits that I’m bound to?” Society, friends, family, strangers, and in my case doctors; these are the people that set my limitations.  How am I supposed to measure whose limitations are hard limits and whose limitations I can bend? Let me tell you one thing, the resilience I have isn’t from just sitting around and watching other people decide what I can and cannot do, but my strength comes from knowing what I can handle.

There was a discussion today with a few CHDers about the things we’ve done that we shouldn’t do, and honestly I didn’t think much of it.  I’ve gotten tattoos, I’ve been zip lining, I’ve rode on the back of motorcycles, I’ve climbed trails that didn’t seem like they had an end, I’ve eaten more not “heart healthy” food then a normal person should consume, and I’ve been on more roller coasters then I can even count.  The point of that was that my doctor never said I could not, but he also didn’t endorse the tattoos or the motorcycle rides.  I’m not going to stop going to appointments, stop taking my medications, and if my doctor told me I was too sick to go on rollercoasters or needed to cut something out of my diet for my heart health I would.  I don’t have a death wish. In the same since though I don’t want to live in a world where I can’t test my limits, where I can’t try something new, where I can’t experience some great adventure, and where I can’t fill the albums of my Facebook page.

In no way am I condoning just going off the edge and having no regard for your doctors, but even this week I’ve learned that sometimes you need to take a good hard look at who’s taking care of you.  Adults with complex CHD are the pioneers when it comes to living into adulthood; I mean there is really no answers to “what do we do next?”.  I understand that everyone with CHD has a different story, some are novels while others are just chapters.  Some people write their disease where their name should be; while others just make their disease a chapter in their book about life.  I know my book is filled with my condition, and I know I am who I am because of it, but it is not me.

“The only person you should try to be better than, is the person you were yesterday.”
– Matty Mullins

Live, Laugh, Love…..Always,

Nicole

Made this Facebook cover using PicMonkey.