Our son was born with a birth defect called a cleft lip and palate.
This happens when the lip and roof of a baby’s mouth doesn’t fully close up in the womb creating a gap, thus the “cleft.”
During almost all of the pregnancy, we went about our lives completely unaware of it.
Finding About the Cleft
We were so excited to have another child, and with each passing day, the excitement grew. And around 36 weeks, we were ready to pop emotionally and physically. But something strange started to happen.
My wife experienced mild contractions, but not enough for labor. We were surprised but not scared, at first. Then the contractions went on for days.
Alarmed, our midwives thought it could be the placenta blocking the birth canal, which was scary. So they rushed to get us an appointment for a full anatomy scan of the baby to see if that was the case. It wasn’t.
But the doctor found something else.
In the tiny examining room (in New York City most rooms are tighter than you think they should be), my wife could sense that the doctor was uncomfortable. Eventually she found the words to say, “Your baby has a cleft lip and palate.”
I couldn’t be at the appointment but met my wife at the clinic so that we could walk home together. When I saw her there, she melted into tears. So I wrapped my arms around her and tried to provide some comfort.
Her reaction frightened me, and I asked her if the baby was ok. She said yes. But there was clearly more. Then she told me why she was so distraught.
And, after a moment, I said, “So, he’ll be like Joaquin Phoenix.”
She looked at me with a look that said: “What the #%*# are you talking about?” So to clarify, I said, “You know, the actor with the cleft lip; he’s famous,” and rattled off a couple of his better movies.
She ignored me. “I guess she wasn’t looking for clarity,” I thought.
Eventually, we walked out of the sterile clinic, hand in hand, bracing ourselves for the unknown as we plunged into the outer world.
Once we hit the streets, we prayed. It helped both of us.
Then we did the thing that she was dying to do—plan. Planning is my wife’s love language. So we talked through the scenarios and what we needed to do to find the best care we could and how we would go about it. I was already googling up physicians in NYC who specialized in this as we walked through Brooklyn on a chilly but sunny day. A course of action started or form as we made our way to the subway platform.
Everything started to feel ok again, when she said, “So. Joaquin Pheonix,” and smirked at me. “Yeah,” I said, as I googled him up and showed her a picture of him, “He’s a good looking dude, right?” She seemed to give an approving look. I said, “See. Our baby will be fine,” reassuring her.
Cleft Birth, at Home
A couple of days later, she went into labor. We weren’t sure if the baby was coming or not. But then something switched on, and it got real.
And all the while my wife was laboring, I held a hope that our baby didn’t have a cleft thinking there was a chance the doctor was wrong. But she wasn’t.
Twenty minutes later, our son was born, and it happened so fast that the midwives didn’t have time to arrive to make the birth. So my wife and I were alone (as we were for the first one).
He was healthy, but he had a full unilateral cleft lip and palate, which means his cleft was on one side and extended to the back of his mouth and up to his nostril.
I just wanted our son to be ok, healthy, “normal.” He was beautiful. But he was also different. He had a gap in his face.
Surgeries were also in his near future.
We had already researched all kinds of doctors, knowing who was the best and where they worked and reviewed their resumes and read all of the reviews and what so and so said about them in 2013. We talked to other parents of cleft babies and asked about their surgeons. We dug deep.
Then it was time to do interviews, which sounded like speed dating with surgeons. We set up meetings with our top three.
But after interviewing the first one, something clicked. He was confident, as all surgeons are. But more than that, he had a determination to provide the best outcome for his patients. And the postoperative pictures were amazing. Also, he specialized in cleft operations. It’s all he did. And somehow, there was even a twinge of humility in him. We liked him; and more importantly, we trusted him. So we canceled the other interviews because we didn’t need to look further. He was our guy.
The weeks that ensued were much harder than we thought they would be. It probably had to do with the fact that we were essentially shaping our baby’s face with a piece of acrylic, called a NAM.
Our baby basically needed a “retainer” for the gums, called a nasoalveolar molding (or NAM). It’s like that plastic contraption people wear on their teeth that an orthodontist will give them after they get out of braces. But our baby had that for his gums on his upper jaw (since newborns don’t have teeth).
He had to wear the NAM all day every day for the most part. And my wife and I (but mostly she) would fasten it to his face with surgical tape and rubber bands, the same ridiculously tiny ones used for braces. Every week my wife would go in to see the dentist so that he could adjust the NAM.
Our baby screamed a lot during that time because shaping a face with a big piece of acrylic in your mouth probably hurt him, or at least it was super annoying. So, like a banshee, he would rail at the top of his lungs. And for such a small human, he had a huge voice. And he would employ it for hours, sending us curling into a fetal position, feeling like we needed to vomit. It was hell.
There was also some screaming between my wife and me. I mean, having a newborn is hard enough with the lack of sleep and diapers and blowouts and making sure they’re gaining weight. Fights are bound to happen. But add the fact that your trying to pull one side of your son’s upper jaw to the other side to close a wide gap in his face is something else entirely. Babies cause stress. With the cleft, that was taken to another level. Sometimes we went nuclear.
But regardless of who was screaming and no matter how loud it was, we were grateful for the results. We knew that doing the NAM well would make a huge difference for the outcome of our child, so we wanted to overachieve here. And, Thank God, it worked.
After three months, the cleft shrank to a sliver.
But, nothing prepares you for letting your three month old baby go under the knife. The surgeries were planned. And the first one was scheduled. But we were terrified.
The lip and nose came first. Waiting for him to get out of the operation was terrible, but the transformation was astounding. After the swelling from the surgery went down and he started looking like our baby again instead of a boxer after fighting ten rounds, it almost looked like he never had a cleft. (These days, you can’t even see the scar.) It was amazing.
Then seven months later, right as the coronavirus started to ramp up in NYC, we had the palate surgery. To this day, I have no idea how the surgeon closed up the cleft on the roof of his mouth. One moment our baby had a gap on the top of his mouth. Then, later that same day, it was gone.
There was only one problem. It was agonizing for our baby. With stitching everywhere and raw flesh, it looked like the roof of his mouth was Frankenstein-ed together. It essentially was. And that meant pain. He was desperate for pain-killers, which we gave him. We agonized with him.
But all of that is past us now.
And these days, what happened almost feels like a dream, a distant memory of some event that probably occurred. It could have been someone else. And the truth is, it is.
There are thousands of other families who go through a similar experience, and many aren’t able to get the kind of care we received.
So, I’m grateful. It makes us—my family and me—more compassionate. We can empathize with and have compassion for those who also have difficulties or circumstances that are worse than ours. All of this has softened our hearts and made us more aware how hard parenting can really be. Having a baby is a dangerous business. It can crush your heart. But it’s worth the risk.
Best of all, we are grateful that God gave us this baby. He’s special. He’s undergone a lifetime of pain before he’s even tasted his first birthday cake. Some of the experiences were awful, but they gave us perspective. And we are richer because of him and all of the moments we’ve had, good—and bad.
Before the birth of our baby, if you had told me that a birth defect could be a gift, I would have thought the idea ridiculous. But now, I know it’s not.
We are blessed: We have a son who looks like Joaquin Phoenix. 😉
This is Cleft Awareness Week. And this is our story of having a cleft baby.
Love to you all.
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We all want to make smart decisions. And you can, by living in the tension.
Now I’m not talking about the daily decisions like eating a sandwich or salad (get the half and half, of course), or to like a photo on Instagram or not.
Let’s talk about big decisions, like looking for a new job or not, marrying this person or not, moving to a new city or not, breaking up with that person or not.
Those decisions are hard, and scary.
Because they can really change how you live, you take them seriously. You don’t want to derail your life and become a trainwreck.
But instead of trying to figure out what is the best way forward, it’s so tempting to do nothing. You decide not to make a decision. You keep on dating that person that you’re not so sure about, stay at a job that just doesn’t quite seem to be the best fit, keep doing what you’ve been doing even though you hate it.
But that is a decision. Indecision is a decision.
So you might be asking, What should I do instead? Good question.
Everyone has their practices for making decisions: prayer, meditation, journaling, walking, fighting, driving, etc. I won’t tell you which method is best. Everyone has their own style, gait, way. You do what feels right there. But I will tell you this.
To make smart decisions, you need to sit in the tension.
That means sitting in the push and pull of the possibilities, the pros and cons, the uncertainty. You have to straddle the choices and hope nothing jumps up and smacks you in the groin. And you have to stay there.
The only issue is that we hate living like that. All of us want certainty. Everything in us craves it like a stray dog slobbers after food. So we end up making stupid decisions because we want to rid ourselves of the pain of not knowing.
To do that, many of you do the opposite of indecision: You make a rash choice because sitting in the tension sucks. It’s so tense. To make the unknown known as quickly as you can, you just decide even before you really know what you’re doing.
You get engaged even though you see enough red flags to make you feel like you’re walking around Beijing, take that job even though the new manager seems like an ass, move to a city even if you’re not confident it’s the best place for you.
One of the primary mindsets that causes you to decide too quickly is that many of you idealize what something can be, telling yourselves that such and such will work out. So you jump in. But the truth is that things often don’t work out. Marriages break up fifty percent of the time, more people than not hate their jobs, and a lot of people live with regret.
Instead of being idealistic, some of us can demonize an option, not because anything is really that wrong with it. You just think that nothing works out, so why should this be any different. You tend to be a glass half broke type of person. So you turn down anything that comes your way, thinking of all of the negative things that could happen to you. But you’re likely being overly pessimistic, because things rarely go as badly as we think they could. (As much as we think the zombie apocalypse will happen, it probably won’t.)
Regardless if you’re overly optimistic or pessimistic, making rash decisions isn’t a good decision-making process. It’s gambling.
Sure, you can make a quick decision, and sometimes that works well. Life does require assessing risk and taking risks, but it shouldn’t be treated like a roulette table, where we put all of our chips on red just because it feels right. You can get lucky, but that doesn’t mean your decision-making process is good. That doesn’t mean you will consistently make a great decision.
To do that, besides straddling the options, hoping that nothing bops you in the private parts, you need to search for the truth.
To know the facts about the options before you is key. But to do that, you need to do the work. You have to pick up a shovel and start digging. Ask the hard questions to those around you that are relevant to your decision. If you’re looking at a job, look at Glassdoor and read the reviews, talk to people in your network and ask them what it’s really like to work at that company—keep digging.
If you’re thinking about getting engaged but you have your doubts, you need to look at them. Be honest with yourself. When it comes to love, we tend to have rosy glasses on. We do that because we want to spare ourselves and the other person the truth that you shouldn’t be together (knowing that is terribly inconvenient). But you’re afraid of being lonely, so you just wander into an engagement that is convenient but genuinely uncomfortable. It sucks, really. Don’t do that. Shoveling past the smelly crap you are telling yourself will force you to see that you both would be miserable if you take one more step forward in your relationship. And you will likely do the one thing you know needs doing: Breaking up.
Shoveling to find the truth is hard work. It’s painful. You get blisters when you dig long enough. But there’s gold in them hills.
You can also get callouses and feel tempted to dig forever. That’s just going back to indecision.
To mitigate against that, create a deadline. Sometimes one is given to you by a potential employer in an offer letter, or something like that. But when it’s not, make your own. Mark it in your calendar. Tell yourself that you will decide by the time you set.
Of course, make sure you have enough time to dig below your dung pile. That layer can be quite thick sometimes, you know. We can tell ourselves a lot of lies. So give yourself the time to find the truth. And then you need more space to pray, meditate, journal, walk, fight, drive, or whatever you do to make your decisions. So account for that.
While you are deliberating, know that you can’t make a perfect decision. That does not exist. Remember that you are blessed to even have such choices before you. But if you practice sitting in the tension and digging for the truth, you will have a better chance of making a great decision than a poor one.
And you won’t find your life derailed from your decisions. In fact, you’ll realize you’re not even on a train. You’re not a passenger.
You’re an explorer. You’re in a forest. And you’re blazing your own path.
It drew from some amazing events and people that showed how actions are what actually form culture. Not thought, philosophies, ideas, values, but cold hard acts. If you fire someone for lying, you are creating a culture. If you let them lie, you are also creating a culture. The question is what kind of culture do you want to create.
And reading that book got me wondering about where mindset fits in. And that’s when I heard this phrase in my head.
“How you think is who you’re becoming.” And I think that perfectly compliments that author’s point about actions and is a true statement that I can stand by.
The way one thinks is always the precursor to action. But not just any thought, it’s how you think that changes actions, not just what you think. What you think are the conclusions you draw, which is important. But, I believe, how you think is more so because it is the process by which you reach those conclusions. In other words, it’s your operating system, your mind’s software. If the way you think is that you’ll do anything to win, even lie, then you’re going to do it because you’re programmed to. It’s just a matter of when. Or, if you see the world through a lens of fear, that’s going to determine the way you navigate through the world, whereas someone who considers the world to be good-natured will act very differently.
But that doesn’t mean you can’t change. Your software can get upgraded. It starts with having a realization that changes the way you think. Epiphanies don’t happen often, but when they do, your actions change because you now see the world differently. It causes your mind to think differently.
Early in my marriage, our culture was terrible. I always had this dreadful fear that my wife was going to leave me. To someone who knows very little about me, it would be easy to conclude that my fear was caused by insecurity, which I’m sure I was insecure; but, I don’t think that that was the real driver of my fear. I was afraid that my wife would leave me because I had been left before.
My wife and I got married when I was in my thirties. But I had been previously engaged in my early twenties. And that fiancé broke off our engagement, which broke me. I was devastated and wasn’t able to really get back into another relationship for almost five years. And even though I had healed much by the time I got married over a decade later, my thinking was still damaged, my OS was buggy.
Engagement and marriage are similar situations. And because of those similarities, I thought my wife could also leave me just like my ex-fiancé. In short, I thought the situation is what drove the results of these relationships. And that heightened my fear. But there was only one problem. I was wrong. How I thought was totally wrong. My OS wasn’t just buggy; it was bad.
Because my wife was a completely different person, I shouldn’t have thought the way I did. My marriage wasn’t a situational paradigm; it was a personal one, meaning that this is about a person, namely, my wife.
And one day, during a huge fight, I tried to use words to get my wife to leave me. (This was stupid since I tried to get her to do the very thing I was deathly afraid of, because, in a twisted way, I thought that it was inevitable that she would leave, so I tried to force her to when I could expect it, instead of unexpectedly like my ex-fiancé.) In all of that, I had an epiphany. My wife was never going to leave me, no matter how much of an idiot I was. She was staying.
Knowing that changed everything. I stopped getting so scared and pushing her away. Our fights lessened in quantity and intensity; I got less stupid. And we started to flourish. All because I stopped thinking situationally and realized that this was about a person. My wife wasn’t my ex-fiancé.
All of us have faulty software in our minds. It’s got bugs; we’re buggy. But we don’t want to stay that way. We want to and can become someone better. And that almost always happens by changing our software or how we think. But do we always need to fight with our loved ones in an epic battle to do that? I hope not.
There are a lot of ways to kill our mental bugs. Here are a few that I think work.
Being social creatures, we need to be around people to become the best versions of ourselves. But it’s not just any kind of people. They should be those to whom we aspire to be like or at least those whom we respect. Because if we surround ourselves with negative people or those who aren’t what we hope to become, we will most likely follow their lead.
So it’s essential to choose your tribe well. It doesn’t have to be a large group; it can be small, a couple of people, maybe even just one person. But dialoguing with others and hearing what they think about you and allowing them to speak into your life and how you think will only make you better, especially if they have your best interest at heart.
Read challenging books
Books aren’t as personal as friends: Books can be conversational, but you can’t have a conversation with them. But they can still change the way you think. Reading is one of the best ways to feed the mind, the soul. The trick is to read authors who may not believe what you do or study subjects that you find challenging, or may not be familiar with. Taking in ideas you are already comfortable with and espouse isn’t going to help you get better. That will only help you stay the same. So read outside of your comfort zone. Authors who push themselves or have reached great heights or tell stories of those who have, should enter into your library and fall beneath your gaze. And when that happens, lightning will strike. An epiphany will happen.
I’ve lumped all of these together—maybe—because I don’t meditate and may feel a little inadequate since all of the cool smart kids like Tim Ferriss, Ray Dalio, my wife, swear by it. But, when I do it, I just want to take a nap. The other four work like a charm for me, though.
The point of this point is to process your thoughts in a restful, meditative, reflective, and even spiritual, fashion. Letting the mind coalesce various thoughts, experiences, and feelings creates magic. You connect the dots and BAM! That epiphany hits you.
Running is one of the best ways for me to get epiphanies. I’m not exactly sure why, but I do know it’s impossible for me to feel like taking a nap while I’m running, that’s for sure. Another marriage-altering thought hit me while I was running (which I’ll save the details for a future post).
And the important thought I’m trying to make here is that you need to create the space to make those connections. Connecting the dots requires mental space. Whether it’s running outside, journaling at a desk, or closing your eyes and doing a body scan, give your mind the time to run.
Improving the way we think is critical to having better relationships, becoming healthier people, living better lives. Because how we think forms who we become.
Our actions are critical, and they do form culture; but, if you can think better, you can’t help but act better.
You’re not behind. You’re right where you need to be.
Just because so and so got that amazing title in their 20’s, or grew their business, published their book, got married, had kids, and did their thing before you did, that doesn’t mean you’re behind.
You’re on your own track. You have your own story.
Look at Colonel sanders. He started Kentucky Fried Chicken when he was 62. Was he behind? No, he was right on time. He wandered from odd job to odd job for decades and tried various ventures that failed, and even got fired for punching coworkers. But, he didn’t give up and continued to fight until he encountered birds in a delicious batter that made him famous.
When I doubted my ability to get married and thought I was doomed to a life sentence of aloneness, a friend told me to “Stay in the game.” He was 44 when he found the love of his life. She was the right person at the right time. At 44, he wasn’t behind. He was timely.
And he was right about staying in the game because I found the love of my life a few weeks later at a birthday party. It was love at first sight. Even though I felt behind since I was virtually the last of my friends to wed, the timing was perfect.
Timing is everything. But everyone’s timing is different. You have your own pace; you have your own time. Don’t feel rushed, like you need to do what everyone else is doing when they do it. Find your way. Live your life.
On an episode of the Tim Ferriss Show, one of his guests, Ramit Sethi, talked about prenuptial agreements, or prenups, which are contracts signed before people get married that dictate rights to property and what happens after there is a divorce. They were both in favor of them.
It was interesting.
I don’t mean that in a snarky condescending, self-righteous way. I mean it was truly enlightening and helpful to consider.
As much as I am a huge fan of Tim Ferriss (and really enjoyed Sethi), on this subject, I disagree.
There is business in marriage. There are financials, income, taxes, losses, gains, spreadsheets, etc. Money plays a large part in the relationship and often is one of the main topics couples fight about. All true.