No, it really IS different.

More then a few time in the past few years when I've let my guard down, or just completely broken down, in front of someone and talked about how terrified I often (always?) feel in regards to my son's CHD and that he might (will?) someday die (and likely before I do), I've been met with a response along the lines of "Well all parents worry about that! All parents live with the fear that something could happen to their child."

And in the past my reaction to those statements has always been:

Aloud: "I know. You're right"...followed by a change of subject.

Mentally: "But, it's different!!!! It is! And you're lucky you don't get it!!!"

Finally, a couple of weeks ago, while driving (which is where I do most of my thinking & crying) I finally was able to articulate (at least to myself) exactly how it's different.

While all parents hold some worry that something might happen to their child, they are also able to hold that something might not. I do not have that luxury.

I have those same fears. But I DO NOT get to hold that something might not. Because essentially my child is holding a ticking time bomb. We know this 100% for sure. We have pictures and written documentation to prove it. We just don't know what the countdown timer says. It could say 10 seconds, or it could say 30-some years.

In other words, I fear all the same things other parents do (car accidents, fires, drownings, kidnappings, etc.) and I live in fear EVERY DAY that this ticking time bomb will go off sooner rather than later. Because if one of these other things don't kill him first, his heart (or some related complication) will.

And that's how it's different.

Caving in.

We learned about our son's heart defect at our 20 week ultrasound. It wasn't long before I had become familiar with dozens of blogs from other heart families. I've read stuff that terrified me. I've read a lot that provided some relief. I've been reduced to a weeping puddle more times than I can count (although that also happens spontaneously and without the help of blogs).

Since our son was born I've debated writing my own blog. I need an outlet. A way to share my thoughts and feelings, good and not so much, irrational and rational. And since I'm not one for journaling, this is the next best option. But I've held back because most that I've seen include pictures and names, the entire story of a heart child's and heart family's journey. Which I've appreciated. I think I feel some connection with these families because of how open they've been in their sharing. But, much of what I've been debating revolves around how much I want to reveal publicly. Because as much as this is the story of my journey as a Heart Mom, it started with my son's journey as a Heart Patient. That leaves me feeling like in all of this I must honor him, and his autonomy, in telling the story. Not to mention that (if I'm being truly honest) the thought of putting all of this "out there" by name terrifies me, and there is some comfort in remaining anonymous.

So here I am. Trying to hide, yet be heard. And validated...because even though my husband and I go through this together, I still feel very alone sometimes. We grieve very differently and neither one of us can be everything to the other 100% of the time. So I'm simply here to process. To get my thoughts in order and share them with anyone else who might identify.