I’m one of those people that laughs at funerals. It’s a trait that throws people off because, as a good friend reminded me recently, I’m a ‘bit of a pleaser.’ Give me a tense situation and I crack an inappropriate joke or start swearing like a truck driver. It’s a complete deflection — gives my overstimulated brain an opportunity for rapid analysis. I blame my parents. Some people teach their kids to think before they speak. Mine taught me to laugh before you cry.

My bizarre coping mechanism has served me well (hairy eyeballs aside), both professionally and personally. But never so well as it as the last three months.

Three months ago, I became a NICU mom.

Little Lion Man - (cool) progeny

Since curling up in a ball and hiding in the closet wasn’t the most productive of options, humor — and fraying threads of grace — have had to suffice.

When you learn your pregnant and start thinking about adding this new little person to your family, you don’t ever think about including ‘neonatal intensive care unit’ in the game plan. It catches you off guard, like an unintended sucker punch that quite literally snatches your breath away. For months. I think I’ve exhaled exactly three times in the last 90 days.

Last February, Pat, the Bug and I welcomed a beautiful little boy into our family. Our Little Lion Man. Like his sister, he’s got a bit of a flare for the dramatic. Within thirty seconds of making his arrival after a relatively uneventful labor, he had the neonatal intensive care team at his side. He wasn’t breathing. Blue. Quick action from the labor and delivery nurses and he inhaled. Two minutes later he was whisked away to the NICU. I didn’t see him for six hours.

Over the next few days, we learned that the little guy was born with Pierre Robin Sequence. Characterized by a small, recessed jaw and cleft palate, his difficult upper airway makes basic functions like inhaling and swallowing extremely challenging. So little things like breathing and eating are a bit tough {See? Inappropriate mischaracterization aimed at lightening the severity of the issue. Classic me.} At first, it seemed like his case was relatively minor as his oxygen sats were in the ‘ok’ range. But after four days of struggling to breathe, he’d used up all his reserves. He was transported to the Johns Hopkins Children’s Hospital NICU.

Outside of a one week ‘vacation’ to Mt. Washington Pediatric Hospital, we’ve been there ever since.

Little Lion Man - (cool) progeny

I’m not going to pretend this has a picnic, but we’ve counted ourselves extremely lucky. Our little guy’s prognosis is so amazingly good. His issues are mechanical. Fixable. Holding on to that doesn’t make the journey any easier or the decisions any lighter, but it does help keep all of us going when exhaustion seems overwhelming. Makes those middle-of-the-night hospital milk runs, 1 AM phone calls from doctors, 12 hour hospital visit marathons followed by cooking a ‘real family dinner,’ our regular bath routine for the preschooler and five hours of post-bedtime catch-up work a tiny bit more doable. Not that we’re doing any of it well. But we are doing it.

Little Lion Man has had four trips to the operating room and is scheduled for a fifth on Tuesday. When I think about what Pat and I have agreed to let modern medicine do to our kid, it reads like a court order for termination of parental rights. Yes, I did consent to my son’s jaw being broke. Yes, I did consent to giving him morphine knowing full well he would become dependent on the opiate and we would need to eventually control withdraw symptoms. Rehab for neonates? We’ve done that. Yes, I did consent to punching a hole in his upper airway and inserting a piece of plastic tubing (a trache) so he can breath. Yes, I did consent to running another piece of plastic tubing through his nose and down his throat so he can eat.

These things have saved his life. Check out that million dollar jaw.

Little Lion Man - (cool) progeny

Isn’t he cute? {{Yes, I am his mother and I am completely biased. But he is going to be quite the heartbreaker one day.}}

You may be wondering why Pat and I have chosen to stay quiet about this major part of our lives for so long, given that many of you have been reading about our family life online for the last three years.

Well, we were making inappropriate jokes and swearing. Deflecting. Analyzing. Trying to figure out the right decisions for our son. Trying to make sure his older sister didn’t get lost in our day/night shift hospital shuffle. Hoping like hell we weren’t screwing either kid up badly enough that they’ll need anything more than a tiny bit of therapy in their twenties. Thankful for our incredible friends and family network that has supported us through this roller coaster.

Barring any more g-force plummets, our little guy is coming home in the next few weeks. Because the flicker at the end of the tunnel has grown a bit brighter, we’re feeling like we can start telling our story. So over the next few weeks and months, we’ll be sharing glimpses into our new normal. Which, for the most part, has been no normal. A few wise cracks. A couple of good belly laughs. One or two good cries in the car. Exhaling in the most unlikely of places and situations. Midnight dinners. Endless conversations with a parade of revolving doctors. Frustration. Relief. Rinse and repeat.

A friend of mine recently wrote me and said “You’re impressing the hell of out me with how together you look online. I’m guessing real life isn’t so pretty.”

She’s right. It hasn’t been. A recent glimpse in the mirror proved that {hello I-haven’t-slept-in-three-months-dark-circles}. It’s been rocky. It’s been grueling. Like when you get to the 22nd mile of a marathon and have to break through the wall. You can’t see the finish line but you know it’s there.

Little Lion Man - (cool) progeny

It’s been beautiful.