This Friday marks the sixth "anniversary" of dread. Hearing the words you desperately hoped you would not hear: "Yes, it's time." That day -- Dec. 19, 2008 -- when our greatest fears were realized and reality set in. Surgery #3 was upon us.
Some people remember faces and not dates. For others, it's the opposite. For me, well, it's everything -- especially when it comes to this: I have tons of images, movements and memories branded onto my brain.
I remember the "Toy Story" button-down pajamas Josh wore that day. I remember the walk my husband and I took as we carried Josh down one floor to the catherization room. I remember having to lay him down on the bed and hold him there until the mask -- flavored with cherry -- took him away to sleepy land.
I also remember the tearful walk back upstairs to the waiting room where some of our family -- who had insisted on coming, especially since they were from out of town -- was waiting for us.
Josh was just 4 at the time and I was pregnant with our daughter; she's now 5.
I'll be honest. I wasn't nice that day -- especially not to my in-laws who had no clue how to handle me. They'd never seen me like that. Unfortunately for them, they walked right into my fire.
I've learned in this life that while none of us walk the same path, we do have certain commonalities -- especially when it comes to tragedy and sadness. I have talked with a number of people who've faced such situations, and many of them are like me. They have little to no patience for patronizing platitudes and cliched phrases, such as "I'm sorry" or "It will be ok."
Yes, I realize you have no idea what to say to me, but in those moments, your comfort is not what I care about. I'm sorry, but that's just true. (A quick note: I will say that I'm sorry if as a reader of this blog you can't understand that.)
I mean, what are you "sorry" for? You didn't do this to him.
And my personal favorite: "it will be ok." Really, how do you know? Could you please tell me? Is there something you know that I don't?
I would rather you have an honest moment with me and say, "Wow Stephanie, I just don't know what to even say." Maybe give me a hug. Those things are meaningful to me. You know why? Because it's just simple and honest.
In those moments, when my child was the only thing on my mind, I just didn't care about what I said back to my in-laws. These experiences have taught me that, no, you don't "know what it's like," just as much as I wouldn't know what certain aspects of your life are like for you.
The bottom line is this: Everyone is different, but for me, there are no magical words that will truly make me feel better. That shouldn't be the goal; you can't fix the problem.
The only words I want to hear are from a surgeon who says, "Nope, it was a false alarm" or "We've found a way to make it so Josh NEVER has to have surgery again!"
And since neither of those things are a reailty, all I desperately want to hear is, "He's ok and in recovery. You can see him now." That's all I want. Because for the three times we've traveled this road to surgery, each time, those have been the most magical words I've ever heard in my life.
And now, as we gingerly prepare for our next stop through surgical purgatory, I'm fearful of the words we'll hear at our next appointment in February.
Six years ago this Friday, my heart broke for a third time. And just a few weeks after that, Josh's had to be fixed again.
About Josh's Mom
By day, Stephanie is in marketing; by night and all other times in between, she's a mom and wife, and highly passionate voice for CHD fundraising and research.