It's been awhile since I've written on this blog. Just about three months. While it hasn't necessarily be intentional, I've always said that I'll only write here if I have something to say.
So here it is. Having kids is already tough. Talking to kids is already tough. Explaining to your child what happens when they have open heart surgery? Wow.
As we sat at dinner last night, we talked about Josh's uncanny ability to heal quickly (he had a fever earlier this week so it was somewhat topical). And from there, the questions about his medical history started. It's not the first time he's asked questions and I'm glad he asks. That said, answering his questions sometimes isn't the easiest thing to do.
I'm glad he's asking. I want him educated. And he's so smart: his questions are sophisticated and more in-depth.
It's not the clinical stuff. That part is easy to explain -- I've been doing that since he was born.
It's the emotional component: asking about how much pain he was in, why he was sedated after surgery, why he had to breathe on a tube, what's a chest tube and what actually has happened to him. I mean, you're telling your child how his heart was literally held in someone else's hands.
And that's the part that really sucks: trying to explain that without the emotion because, deep down, you know another surgery will be here some day relatively soon and you don't want to scare him. He is still only 10.
I downplay the emotion, the heartache and the fear, but it never actually goes away. It then rehashes every cry, tear and fear we had and still have for him.
However, deep down, I know we are doing the right thing. I know they're hard questions, but I can't shelter him from his history.
As I've always said to others, "It's not about you; it's about him."
Last month was the first time since I started this blog that I didn't post. It's not that I didn't write something; I did. I just couldn't bring myself to hit "publish."
And I know the reasons why: fear and fatigue.
The waiting game we continue to play is wearing me down. I started my last post on Feb. 11, just one day before Josh's last appointment. I was so worried and so mentally exhausted that I just never went back to finish it. I wanted to run away from it.
(Before I go any further, I'll tell you that Josh is doing fine ... for now. Overall, it was the best news we could have received - because the phrase, "Josh will never, ever have to have surgery again" is not the reality. The numbers they watch have continued to rise (not good), but he's not in a danger zone yet. He has an MRI in June and then we'll see what the truest numbers reveal.)
It was also Heart Month and his appointment - very unintentionally - was smack dab in the middle of CHD Week. Because of course it was. And like anyone who has a particular interest in something with any type of timeliness, you can imagine all the images and stories I was inundated with via social media that week. Heck, even I started off the month stating that I was going to post a stat and/or information on CHDs every day. But it just became too much. It was overwhelming.
By the time Josh's actual appointment came, I was burnt out on focusing so much on this part of his life - the part I can't kiss away or throw a Band-Aid on to make it better. I cried on the way to get Josh from school and put on a brave face as we went through the motions at his doctor's visit; it's now second nature.
It wasn't until a few days after we received our good news that I started thinking, "Gosh, if you didn't know me at all, reading this blog, you'd probably think I was quite the Debbie Downer." Or, at the very least, you would probably think that this situation rules our lives.
I'm here to tell you that it doesn't. For the most part, our little family of four lives your typical middle class life. The kids are tough to get out of bed for school; they argue; then they love each other; we go to baseball and gymnastics each week. Standard. Normal. Content.
However, having this blog is a sanctuary of sorts for me; I can air my thoughts, fears and dreams for my son. This one, terrible, horrible thing is the focus here. It's a spot of vulnerability for me. And for anyone who knows me, while I generally wear my heart on my sleeve, my spoken words - for the most part - are never quite as raw as anything you'll read here. This is my safe place.
Even if you decide it's too much and don't come back, I'll continue to write. It's my therapy and expression. I know I am strong - though not as powerful as my son. But I may also be sad, and happy, tired, angry, resentful, relieved, devastated, positive, negative and anxious. I will be human.
Taking a break and now looking back at what I started to write last month (it's posted below), I actually think it's beautiful - because it's honest and raw. It's me. See for yourself.
Twice a year, Josh's "past" becomes our present. Every six months, we take an afternoon and spend it in the lovely confines of his cardiologist's office. He goes through the same paces each time: an EKG and echocardiogram.
And then we wait.
His doctor eventually walks in and lets us know if we've succeeded through another stay of surgery or if it's "time." I'll be honest. At this point, it feels like we're on borrowed time. After Josh's last surgery (at 4), doctors told us that they hoped he'd get to 10, maybe 11. Well, ladies and gentlemen - he's close to 10 1/2. Can't get much closer to that.
So, once again, we are here.
At just around this time -- T-minus 24 or so hours -- I start to feel that inner ick. A plague of anxiety that courses through my entire blood stream and brings out my inner mama bear. It also brings out my anger and fear.
My emotions run the gamut: anger, fear, sadness, anxiety, protectiveness, strength, resentment.
However, I am helpless. I can't control what's to come tomorrow. Logically, I know that. But there's no logic in my heart.
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.
The Power of the Human Spirit
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.
Why Won't You Just Eat
At 10, Josh is very thin. He weighs about 57 pounds -- which is a big deal for him. On average, most boys his age have 15-20 pounds on him.
Josh just doesn't like/want to eat. I shouldn't be surprised. It's been like this from the very beginning. After nine days in the hospital, Josh came home on a feeding tube because he wouldn't eat enough from the bottle.
In his toddler years, we quickly saw the lack of an appetite. And since then, nothing's really changed.
Meals are a stressful time in our house as our son still hovers in the 5-10 percentile for weight. We've done everything from yell and scream to beg and cry. Nothing really gets him to eat. I think we've finally come to the realization that his appetite is just not the same as others his age. And it scares us.
I worry that we yell too much -- even though it's out of fear. I worry that we'll give him some sort of eating disorder since we are constantly harping on about food and getting on him about "eating more." I worry that we'll get to a point where he'll need to be admitted to a hospital for fluids. We get scared that he'll get sick because he won't be able to fight off infection.
Like most other things in life, his appetite has good days and bad days. On the bad days, we are lucky to get him to eat the equivalent of four chicken nuggets or half a turkey sandwich. On good days, he'll eat an entire bowl of pasta. We've even tried the protein shake route with poor results.
I am hoping our latest trick works: smaller meals and snacks more often. We think that maybe he just has a tinier stomach and can't hold down much food. Doing this will constantly get food and nutrition into his body. Fingers crossed. :)
We are hopeful that with age -- and even puberty -- his desire and need to eat will grow. Unfortunately, many CHD kids are like this, as we've discovered. But frankly, it just sucks. It sucks that the kid who needs the food the most wants it the least.
Tick Tock ... Living in Limbo
Josh just celebrated his 10th birthday -- a huge milestone for us because, frankly, we didn't know 10 years ago if this day would have come. But, thankfully, it did.
After Josh's last surgery at 4 and continuous visits to his cardiologist, we were always reminded of the same thing, "Let's get him to 10, maybe 11, and then it will be time."
Well, ladies and gentlemen, the "time" is now. This is by far the longest we've ever gone between surgeries. Of course, I'm thankful for that. However, I now feel like we are living in limbo. Realistically, surgery is happening in the next 12-18 months. And even after all of these years, I still don't know how to handle it.
I find myself being more sensitive, more mama bear lately. Every time I think about planning for the next year, I think to myself, "when is it happening?" It's enough to make you go insane.
It's like playing a constant waiting game. You don't want to go too soon because you don't ever want to go. Who would?
On the other hand, if it's inevitable, part of me just wants to get it over with, so I know he'll be OK and the disruption to his normal day-to-day will come and go.
But, then again, "getting it over with" meaning signing a piece of paper that says, "yes, I realize there's a 5% chance my son could die" and I have to be OK with that.
It means my son being put on a bypass machine and relying on that machine to keep him living. It means having another human being's hands in his body, holding his heart -- and his life -- in his hands. It means hoping that nothing goes wrong; that he's not part of that 5% that the paperwork I just signed talks about. It is hours of sitting, waiting, crying and worrying.
It is awful. And it breaks my heart to even type those words, but they are what they are.
And afterward, it also means extreme pain for him. And the ICU. And once again, going back to that time when it was hard to see past the tubes and wires. Maybe a ventilator. Definitely a chest tube.
This holding pattern is not easy. I don't think about it every day, but it does frequently just sort of pop in there.
I apologize if this blog seems to ramble on, but this is the way my brain seems to be functioning lately when it comes to this topic. All I hear is "tick tock."
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.