Tuesday, May 3, 2011

Living with a Congenital Heart Defect

I am very tired today which makes me VERY aware of my heart condition
I am an adult living with a congenital heart defect.
how incredible is that?
My generation of people born with CHD is living longer and longer and longer!
WOW!

It's really weird for me to be turning 27 years old on Friday (May 6). 
All the research that I have read about my heart condition and those babies that had the mustard procedure done to correct their defect, talk about how awesome it is that 80% of the patients made it to 28 years of age without sudden cardiac arrest or right ventricle failure. 

I can't help but think "Gosh, I'm almost 28."

My future is unclear, but so is every one else's. Heart condition or no heart condition, no one really knows what their future health will be like.

I find it a privilege to be so aware of how blessed I am to be able to go for long walks, hikes through the woods, and play tag with my children. Most people my age take that for granted. 

I guess the major difference for me, with having this heart condition,  is that I walk around with this crazy "why wait" attitude. I see so many people putting off life plans in order to accomplish certain cultural milestones. My impending dome is so much in my face that I take each day with such joy and pleasure while saying "why wait."

That attitude is the major reason that  at 26 years of age I have been married 7 years and have two children whom I have opted to stay home to raise. 

Why wait to start life?
To me, life was starting a family!
To others LIFE might mean something completely different but WHY WAIT.

My main focus is Paul and Anna. I want them to know love through me. That's why I stay home with them. I want to spend as much time as possible letting them know that I adore them. Every second I have with them is a gift!

I have reached that point in my life that I feared would never be.... happily married with a beautiful home and two precious children.

I am sooooo happy!!!  I could die tomorrow very content.

I keep these records of my life (public and private journals) so my children will have some sort of way to get to know their mother if I don't make it to a ripe old age. 

It's hard for me to imagine living past 35 years of age. I know it is possible with all the new technology but it is just so weird to think about having grandchildren one day and being alive and well enough to hold them in my arms.

I have days that I am filled with an overwhelming sadness about having a CHD. It is usually on days like today in which I  am just too tired to function or breathe or tend to the kids properly. 

But most days, MOST DAYS, I feel so blessed to me able to have such an amazing existence!
An existence full of love and purpose.

And honestly, I am not that afraid of death! 

You wrote a letter and You signed your name 
I read every word of it page by page
You said that You'd be coming, coming for me soon
Oh my God I'll be ready for You

I want to run on greener pastures
I want to dance on higher hills
I want to drink from sweeter waters
In the misty morning chill
And my soul is getting restless
For the place where I belong
I can't wait to join the angels and sing my heaven song

I hear Your voice and I catch my breath
'Well done my child, enter in and rest'
Tears of joy roll down my cheek
It's beautiful beyond my wildest dreams

I want to run on greener pastures

[ From: http://www.metrolyrics.com/heaven-song-lyrics-phil-wickham.html ]

I want to dance on higher hills
I want to drink from sweeter waters
In the misty morning chill
And my soul is getting restless
For the place where I belong
I can't wait to join the angels and sing...

I want to run on greener pastures
I want to dance on higher hills
I want to drink from sweeter waters
In the misty morning chill
And my soul is getting restless
For the place where I belong
I can't wait to join the angels and sing
No, I cant wait to join the angels and sing my heaven song

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