The One Person Who Gets It
Throughout this heart journey with Josh, you may have noticed me say "we" a lot.
"We" feel this way
"We've" handled it that way.
However, I would be remiss if I didn't acknowledge my "we" more often -- my husband and Josh's dad, Chad.
Chad is more than just my "we." He's the one person who really gets it -- who really gets me, especially in these situations. This experience changes you. I can say with absolute certainty that Chad and I walked out of the hospital as different people.
But, it's also something only the two of us share. We have familial support and love from friends, but there's no one else in the entire world who has shared the same visions, fear and heartache we have. I compare it to when someone says to you, "I understand." While I realize that person may be only trying to help, in reality, they just don't understand. How could they? But Chad does.
In our times of worry and in the quiet moments while we wait, Chad is my rock and my logic. It's how he's wired. And while in the day-to-day, we may squable about just how logical he is, in these moments, it's a comfort. He doesn't tell me how I should feel or what's right vs. wrong. He just sits there with me because he gets it.
He is a dad, after all -- and a great one at that. He's strong. And he's brave. ... But like I said, he's a dad, so he's also scared. And like me, he has no control. He is helpless. ... So, we hold each other up to the best of our abilities.
If you know Chad at all, you can easily see that he can be stubborn and funny and passionate and protective. But in those dark moments, it's his warmth, gentleness and patience that give me the most strength.
He doesn't know it, but I watch him and see it: When he watches Josh when he thinks no one is watching. When he holds his hand and calmly comforts him as he preps for an MRI. When he sits down with Josh and carefully looks over his homework.
These moments strike me most because Chad is the only other person to know how it felt in those first hours -- to not know if these instances would ever even come to pass. In fact, after Josh's birth, I was on ordered bed rest and it was Chad alone who had to sign off on surgery and say goodbye to Josh, not knowing if he'd make it through. Remember when I said he was brave?
We have this shared experience that most don't have ... and I'd never wish it on anyone. But, this is our reality. And 10 years, 9 years and 6 years later, the images continue to haunt each of us in our own way.
Anyone who knows me knows that I'm emotional and honest about my feelings. I can't hide them. Chad tends to hold back a bit more. It's that logical brain of his. :)
Even still, I think it's that yin and yang that helps us navigate the CHD waters.
This is a love letter to my rock and strength. Thank you for always being my shoulder to cry on, my voice that says to eat (even when I never want to ), my reasoning and my partner in this unexpected and sometimes frightening journey.
Thank you for being what I've always needed.
When Did You Become a Grown Up?
No one prepares you when you're a kid, teen or even newly married that one day you'll fully realize you are a "grown up." Sure, you have your rites of passage: 18th birthday, same at 21; maybe go off to college; graduate; get a job; someday get married.
But it wasn't until I saw Josh for the first time -- coupled with the blur of beeping machines, doctors buzzing around and him being taken away -- that I truly realized what it meant to put on your "big girl pants" and deal.
I have no idea what it would have been like if things had gone as planned for Josh. We would have had him at our local hospital instead of 3.5 hours away; I would have held Josh in my arms right away (not five days later); and 36 hours later, we would have gone home. That's it. Just like millions of other families each year.
I realized I was a grown up when we didn't go home. Instead, some 18 hours after delivery, we sat in a private meeting room, waiting for Josh's surgeon to walk in. Waiting to know if he survived the surgery. Wanting to know what this all meant and what would come next.
We were stoic. Really, we were stone. I mean, after all, we were Josh's everything: his voice, protectors and biggest advocates. We asked questions. We fought for him. We freaked out. And even though he was so new to the world, we only cried when he couldn't see us.
Since then, there have been the mighty highs and the terrible lows that we all deal with in life. But as it relates to this subject, I'll say, for me, there's no tougher time to be a grown up than in this setting.
You are still his protector, but you're not a surgeon. You want to be his advocate but also want to make sure you keep an open mind and listen to the doctors. You want to be his voice but now he's 10 and speaks for himself ... quite well, in fact.
And now the newest challenge -- he asks questions. Lots of questions. And you have to be matter of fact and honest, but he's still your little boy and you don't want to scare him with what you know is going to come sooner rather than later.
There are certain images and moments in everyone's lives that are sort of branded on their brain, as I like to say. Each "heart" moment since 11:31 p.m. on Oct., 4, 2004 has been permanently placed in my cranium. That's the moment I became a grown up.
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.