“Take my hand. And let’s take a ride, backwards down the number line.”

The age of the internet brings us together in some pretty cool ways. Growing up, I never had any friends that had heart surgeries. Now, there are so many different support groups, and I’ve met some really good friends this way.

One of my favorite things is seeing everyone’s birthday posts. We are all so freakin’ excited for our birthdays. Doesn’t matter that some of us are getting gray, and some of us are gaining weight, we are getting to an age that medical science didn’t believe we would get to. We are rocking our birthdays, dammit, because we can. The posts go something like: “I wasn’t supposed to live past “blank”, weeks, months, years, and today I’m 18, 30, 40 ,50!” It’s amazing. And it makes me smile, every time.

We have a lot to be grateful for. Medical science, skilled surgeons, and just place of birth and timelines afforded me and lots of my friends a full life. We are lucky in an unthinkable way, really, that even though we were born sick, so many other things went right for us, to be able to get care. But also, there’s really nothing like the resilience of a congenital heart defect (CHD) person, and it shows most in posts exactly like those we put up for our birthdays.

Me? My parents heard several versions. The first cardiologist they took me to gave me a 50% chance at surviving the surgery. They said I may not make it to my first birthday. (This doctor also broke the news to them in a crowded elevator. HIPAA laws and apparently bedside manner had yet to be practiced). My parents, seeing a pink baby growing, and *ahem* not loving the way the conversation took place, sought a second opinion.

Here’s me, learning early the magic of chocolate.

 

The modern day picture of me eating chocolate really doesn’t look too much different.

They took me to another cardiologist. He did not feel I needed emergency surgery before a year old. He said we could wait several years, but that if they didn’t do surgery, I wouldn’t be walking up the stairs in my teenage years and would be in heart failure before I was sixteen.

What I’ve got is a heterotaxy syndrome of sorts.  What we thought I had my whole life was an ASD, which is a hole in the heart in the two upper chambers.  I lived my entire life thinking this was my defect and that this was what my repair was.  We learned 29 years later, after a full cardiac arrest after another surgery, that that initial repair was much more involved than we ever realized.  I did have that hole in the two upper chambers, but we tacked on about four other defects that I spent my whole life not knowing I had.  But more on that later.

I kept in the back of my mind, not the age I wasn’t supposed to live to, but the age I was supposed to be in heart failure by. Sixteen.  I was not supposed to be able to walk up stairs at sixteen. I threw myself into sports.  Ziplining. Kayaking.  Flying trapeze classes. Scuba diving.  My parents hated it all, but they were pretty good about not holding me back. Except surfing. No surfing. So my idiot teenage self did the most logical thing an idiot teenage self could do.  I tried to sneak a seven foot surfboard into the house.

Mom: “What the HELL is that?!”

Me: “Heyyyy mom. I got a surfboard.”

But I digress.

I knew that these activities were things I was “not” supposed to be able to do.  So I did them all. Didn’t matter that I was short of breath (and we didn’t know why). I was going to do them anyway. Years later, when they were all taken away from me and I was re learning how to walk fifty feet, I can look back and be so incredibly happy that these experiences were part of my life.

I would love to know how old you all were “not” supposed to be. And what you did with your time and those birthdays you weren’t supposed to have. I do a lot of writing for myself, but I do want comments and discussion, because having each other is the best part of what we deal with.  We are all on detours. I would love to hear from all of you what you are doing with yours.

“You decide what it contains.

How long it goes, but this remains.

The only rule is, it begins. Happy, happy, oh my friend.”