Some of my posts lately have been on the sadder side. It's not deliberate, it's just honest. So, as we approach the most "magical" time of year -- when kids are most wide-eyed and hope is at its peak -- I want to inspire.
We talk about everything Josh and others like him have been through. And it's challenging. And it's sad. And it's terifying. But here's what I will tell you. While I would NEVER wish this on anyone, I can say that it's shown me the type of strength that exists in the human spirit.
Josh is, by far, the strongest person I know. And here's the biggest secret: he doesn't even know it. Not yet, anyway.
He is our hero and inspiration. He's the one I look to when I'm down because I know that he's never given up. I've seen it with my own eyes. His strength is quiet and unpronounced, yet the fight is there.
I've watched a child who was merely hours old fight for air and every breath. He literally fought for his life and won. When doctors questioned how long we'd be in the hospital, saying two or three weeks, he decided he had enough and we went home in nine DAYS.
I watched an 8-month-old fight again -- for his life and his family. His doctors said seven to 10 days. We left in four. Four days after open heart surgery. I couldn't do that. Could you?
And at 4 years old, I handed my child off to surgeons again. They said, he'll be here for seven to nine days, easy. We were discharged in three days. And a month after that, Josh started ice skating and hockey lessons.
I have learned from Josh that there is no "no." There's always a way.
Sure, he's messy. And sometimes talks too much in school, fights with his sister and doesn't take out the trash. But he's also fought more in his 10 years than a lot of us will fight in our entire lifetimes. He and others like him will continue to push forward. There is no choice. It's part of who he is. It's not even a question. That, right there, is so very powerful.
And so the fight continues. Today, our 10-year-old is strong-willed and smart, and has the power to literally do anything he wants in life. He is proof that a powerful mind and determination can get you through almost anything.
We continue to teach him to work for what he wants. Life will not be handed to you, we tell him. We utter these words a lot. Yet sometimes I think subconsciously, he knows this more than we know.
His surgical history does not define who he is, but his will, strength and character do. Based on what we've seen so far from a child who doesn't even realize what he's pushed back against, you will not find a prouder mother than me.
Happy holidays to you and yours.
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.