Adventures in Fatherhood

Celeste returns to school today, nearly two months to the day of undergoing scoliosis surgery at Johns Hopkins Hospital to free her spine of the curve in her spine.

Celeste smiles brightly half-way through recovering from surgery to repair scoliosis. She returns to school today, two months after the operation.

It’s been a long road, one we started on blindly when she was diagnosed with scoliosis more than two years ago.  It’s all I’ve written about since the days leading up to the operation, whether it was the anticipation of the surgery, my thanks for the support we received, her recovery, or the terrible drive home from the hospital.

Of course, all those posts were from my perspective. So on the eve of Celeste’s first day back at school, I thought it would be a good idea to write something from her point of view. I sat her down Sunday, and started asking her questions so I could understand how she felt about it.

Me: How do you feel about this whole process?

Celeste: I don’t know.

Well, how do you feel about your surgery?

I don’t know.

How do you feel about going to school tomorrow?

Fine.

Sigh. You see where this was going? You’d think I would have known better. I interviewed countless people during my two-decade career as a journalist, and knew that kids are hard interviews.

You can’t ask them yes-or-no questions in hopes they’ll expand on their answers. They won’t. If you ask them a simple question, they’ll give you a simple answer. That’s why I asked Celeste how she felt about scoliosis and her surgery, but I could see she wasn’t interested in talking about it.

I gave up after just a few questions. “I’ll figure out something else to write,” I told her.

She walked away as I stared at a blank screen, the cursor taunting me as it blinked. My fingers danced lightly on the keyboard, just enough to make noise without letters appearing on the screen.

What now?

She returned a few moments later. “Want to play a game, Daddy?”

I looked away from the blank screen. “Sure, I’m not getting anywhere here. What do you want to play?”

“I don’t know. A board game. How about Sorry!”

“Let’s do it.”

We sat down at the table. Celeste picked her usual blue. I picked red, and I saw my chance to ask her a few questions while she set up the board.

I bet you’re glad to go to school tomorrow, aren’t you?

Yeah.

Why?

Well, I want to see all my friends.

But not your teachers?

Sure, I want to see my teachers again, but I don’t want to take tests and have lots of homework.

That’s the answer I’d expect from a 12-year-old. Did you learn anything after all this?

All of what?

Dealing with scoliosis all this time. Did you learn anything?

No.

Really? What would you tell your friends if you found out one of them had scoliosis?

But they don’t have it.

But what if they did?

Well, the don’t.

OK. What would you tell your friends if they were going into surgery?

That it’s not as bad as they might think. It’s over before you know it, and it feels like no time passed. It’s just like sleeping at night. You wake up the next morning, and you don’t know how much time has passed. It’s weird.

That’s what I hear. I’ve never had surgery.

I know. You’ve told me that, like, a thousand times.

Maybe not a thousand, babe. Did you have any dreams during surgery?

I don’t think so. My mind was just blank the whole time. I really don’t remember.

But you were in pain afterwards. What would you tell your friends about that?

Yeah, it hurt a lot sometimes, but I had medicine that helped. And now I’m not in any pain, so it doesn’t last forever.

Were you scared going into surgery?

No, not really. The doctors knew what they were doing.

That’s true. We went to the best. I bet you’re glad to never have to wear the brace again, aren’t you?

Yeah, I didn’t like how other kids would ask me all the time, “Hey, what’s that thing sticking out of your back?”

What would you tell them?

That it’s none of their business.

But you’ll never have to do that again. That must feel good.

Yeah. I have a scar now, but no one’s going to see it. Well, they’ll see it at the swimming pool or maybe the girls in the locker room, but that’s OK. I don’t care about it. Besides, it’s fading.

Any other thoughts about surgery?

No. Now stop asking me questions. It’s your turn.

Oh, all right.

I don’t know if Celeste learned anything profound during her treatment of scoliosis, but from her perspective, it sounds like she’s most happy about not having to wear a full-torso brace ever again.

Though she wore it without fail 20 hours a day every day, just like the doctor ordered, it obviously made her feel different. And if kids want to be anything, “normal” tops the list.

We all measure life by the milestones we pass, and few are sweeter than the ones we parents count for our children.

Whether it’s the first word, tooth, step, day in kindergarten, or bike ride, all parents marvel at how quickly their children grow and pile up life’s milestones.

Clover has been a faithful companion for Celeste during her recovery.

But a child’s first surgery is one milestone no parent wants to pass, and one I never gave much thought to during my first 12 years as a father. With Celeste’s scoliosis surgery to fix her curved spine several weeks behind us, I pray we’ll never have to pass it again.

That day, Dec. 4, 2013, is burned into my memory. We woke up at 4:30 a.m. to give us plenty of time to arrive at Johns Hopkins Hospital in Baltimore for Celeste’s appointment. The drive was quiet. We had already said everything we could say in the eights weeks leading up to the surgery. All we had to do now was show up.

We listened as the DJs on Radio Disney asked the kids who called in if they ran water over their toothbrush before or after putting toothpaste on it.

Does it really matter? Probably not. I’d ignore the silly conversation on most drives, but on this one it gave us a light-hearted distraction from our destination. None of us wanted to make this drive, but we all knew we had to. The curve in Celeste’s spine had given us no other choice.

We drove through Baltimore City, parked, and found our way to the waiting room without incident. We sat uncomfortably for the nurse to call our name, and did our best to give privacy to the only other family in the waiting room by giving them as much distance as we could.

The friendly face of our pastor greeted us a few minutes later, and he kept us company while we waited. Our turn finally came. The nurse called us back to make the final preparations before surgery. Gown? Check. Vitals? Check. Allergies? None.

Prayer? You bet. As our pastor stood over Celeste’s bed and said a prayer, I placed my lips on her forehead and silently echoed my own. Celeste pulled away enough to look me in the eye. Her eyes spoke the words her lips failed to say: I’ll be OK, Daddy. I choked down a tear.

Our pastor left and Karen escorted Celeste to the operating room to stay with her until doctors put her under. I stood alone in the pre-op area wondering how to pass the time, but Karen returned moments later.

That was fast.

We walked to the waiting room. A computer screen mounted in the upper corner of the room displayed a spreadsheet of the numerous surgeries taking place down the hallway. It displayed no names. Numbers corresponded to patients, and parents could see where their child was based on the color that highlighted their child’s number.

Celeste was 960280. Green meant surgeons were operating on her. Red meant they were done, and she was being transferred to the recovery room or pediatric intensive-care unit. Brown meant she was already there.

Only one patient’s green grid was longer than Celeste’s, meaning someone’s child was undergoing a longer operation than my own.

Bless them. I looked around the room to see if I could tell who it was, but of course I couldn’t. No parent’s worry is worse than anyone else’s, regardless of the ailment or time in surgery. All our faces shared the same concern and told the same story, but no one’s eyes met.

It was as though no one wanted to acknowledge anyone else because if they did that meant it was real. If we remained in our own shells, and on our own islands, then perhaps we could wake up and find it was all a dream.

But it wasn’t a dream. We were all parents who were powerless to help our children more than we already had by seeking medical care from the best doctors in the world.

Whether one hour or 10, every parent counts the countless moments their child is in surgery. One mother passed the time crocheting something. A scarf? A sweater? I couldn’t tell. Her husband sat next to her with eyes fixed on his phone.

On the other side of the room, a father slept sprawled back in a chair not designed for anyone who needs to catch a few winks. His wife sat next to him staring off in the distance. Had they been anywhere else — a bus station, a shopping mall or a coffee shop — but in the same position, you’d swear he was drunk and she was thinking about leaving him.

But they looked normal in the waiting room of a pediatric surgical wing. I understood his need to sleep, and could read the blankness in her stare. They were just exhausted parents sick with worry over their child.

A woman from the front desk walked around the room and called our name.

“They’ve started,” she said when we made eye contact.

“Thank you,” we said and leaned back.

We’ve done all we can. Now we can only wait.

Karen wrapped herself in a blanket from home and pulled out her Bible to find passages related to Advent. The flipping pages stopped in Luke. Without reason, her eyes landed on chapter 8 verses 40-56, which told the story how Jesus healed a woman and rose a 12-year-old girl from the dead.

It’s one thing to know your child is in the best medical hands in the world, but it’s another to believe that she’ll be fine. I believed the moment I read that passage.

The next seven hours crept by in a haze. We read, napped, ate, and binged on Netflix.

I looked at Celeste’s green grid every 20 or 30 minutes, as though time would pass faster. It didn’t. Her pink hair band hugged my wrist the entire day.

Families spread out around the waiting room to give each other more space and some sense of privacy, even though true privacy escaped us all. A doctor would walk through the room periodically, sit down with family, and explain how the surgery went.

A couple doctors led families into one of the smaller rooms that dotted the edge of the waiting area, and closed the door.

I wouldn’t want to be escorted into one of those rooms.

Celeste’s doctor eventually entered the room, but I couldn’t make immediate sense of his presence.

Shouldn’t you be operating on Celeste? … Oh! You’re done?

I nudged Karen. We both dropped everything, and stood. His smile told us everything we needed to know.

“She’s fine,” he said. “She did great. No problems whatsoever.”

Whew!

Someone would come and get us when she was in the pediatric intensive-care unit, he told us before he left. He walked away as though it was just another day at the office for him, which of course it was.

The anesthesiologist and a nurse came out a few moments later, and repeated what Celeste’s doctor told us.

“Yeah, it was kind of boring,” the nurse said through a smile. Of all the words anyone could say to ease parents’ nerves about their child’s surgery, “boring” tops the list.

A nurse guided us to the pediatric ICU a few moments later, and we found Celeste resting quietly. Her bloated face disguised her natural beauty, but I still recognized her. I suppose a father can recognize his children regardless of their physical condition.

The surgery was over, but the hard part — the recovery — was about to begin. I kissed her forehead and thanked God for watching over her while surgeons fixed her back.

Now here we are, nearly five weeks weeks after the surgery, and Celeste is recovering smoothly. She’s even an inch-and-a-half taller than before the surgery, now that her back is straight.  We’ve faced a few hurdles along the way, but for the most part Celeste’s recovery has been as “boring” as her surgery.

She passed the recovery milestones quickly during those early days: first shower; remove bandage; last prescription pain pill; first failed outing; first Steri-strip falls off; first time standing up on her own; first successful outing; first walk around the neighborhood; last Steri-strip falls off; first tutoring session; and many others I can’t recall this moment.

Many other such milestones remain, but we will count those in terms of months given that full recovery takes a year.

But perhaps the one I look forward to the most is as literal as it is figurative: the day Celeste climbs back on a horse at our local riding club and trots around the ring as carefree and pain-free as she was before surgery. The turnout pens for horses at our local riding club provides a safe and comfortable space for horses to exercise and roam freely.

“Thank you” feels inadequate.

How can the same two words I’d say when someone passes the ketchup express the same gratitude I feel about every kind word, every email, every offer of help, every Facebook like, every prayer, and every everything so many of you have offered Celeste and our family in the last week?

It can’t.

But those are the only two words I can think of as I sit next to her at 4 a.m. the night she endured lengthy back surgery to fix scoliosis and listen to the cacophony of the hospital room.

A constant flow of air hums through the heating vent, setting the tone of the room’s soundtrack. An oxygen mask gurgles above it. The IV drip delivers vital pain medicine into her arm every several minutes, its plunging sound rising above all others like cymbals. Look for online medication distributors if you were prescribed with various medicines. Additionally, cannabis for lower back pain treatments is emerging as a promising option, with studies highlighting its potential to provide effective relief and enhance overall well-being.

But I tune in to the sound of Celeste breathing. The deeper she breathes, the deeper she sleeps and the more her body heals.

The hair band Celeste gave to me as the nurse wheeled her into the operating room.

I feel her hair band hug my left wrist. It could have been any of the countless hair bands she has asked me to hold for her through the years, but this one is special.

It was my physical connection to her as surgeons spent nearly seven hours fixing the scoliosis that curved her back. Celeste handed it to me moments before she went into the operating room when we realized her hair was in a ponytail.

She couldn’t wear it into surgery, so she handed it to me and I wrapped it around my wrist like I’ve done countless times in her life. It’s become a father’s reflex. No thought goes into it. You just slide it around your wrist until your daughter needs it again.

But an hour or so into the surgery, I realized the hair band was too tight. It was hugging my wrist and leaving an impression. I started playing with it to loosen it, but a thought occurred to me.

It was as though Celeste was hugging me. I knew she was asleep and doctors were fixing her spine, but as long as I felt the tightness of her hair band around my wrist, I had a small piece of Celeste hugging me.

I stopped trying to loosen it. I wanted to feel her virtual hugs throughout her surgery. I found comfort in it.

All the kind words, prayers, thoughts and moral support of everyone (from both those we know and don’t know) is just as comforting. They were emotional hugs that helped carry us through a difficult time, and left an impression on our hearts and souls.

And as Celeste heals at home through what will be a long recovery, we will continue to find comfort in the moral support you offered when it needed it most.

Thank you.

Genetics can be so random.

In some families it creates a genius who takes human knowledge to places the rest of us never imagined. In others it creates a disease that robs the world of a promising young life.

Most families find themselves between those two genetic extremes, whether it’s a set of green eyes no one can explain, a 6-foot-2 frame in a family of 5-foot-10s, or a predictable set of curly locks on one child but not the other.

by BruceBlaus via Wikimedia Commons.

In my family, it causes scoliosis, a condition that causes the spine to grow crooked.

Some curves are mild and require no medical treatment.

Others require patients to wear a full-torso brace 20 hours a day, seven days a week until they stop growing. Depending on the onset of the condition and the age of the patient, that could be months or years.

The most severe curves can only be straightened by a skilled surgeon who fuses the patient’s vertebrae together with screws and metal rods.

Celeste, our 12-year-old daughter, zoomed through the first two curves in less than two years, and is standing just outside the operating-room door of the third.

She’ll roll through that door Wednesday morning, and God willing roll back out some 10 hours later with a straight spine.

During that time, every beat of my heart will whisper a prayer for God’s grace to guide the hands of the nurses and doctors in whom we are entrusting our baby doll’s life.

Bracing against scoliosis

We found ourselves on this path two years ago when Celeste leaned over to touch her toes during a routine physical. The doctor saw a slight curve in her spine, but I thought little of it. While my spine is straight, my two brothers, sister and father all have some degree of scoliosis and lead normal lives.

That’s genetics for you, I thought. No need to worry.

The doctor sent us to an orthopedist, who we saw a month or so later. The X-ray showed a curve even my untrained eyes could see, but it didn’t require bracing. Doctors generally monitor curves of less than 20 degrees, brace curves between 20 and 40 degrees, and consider surgery for curves greater than 40 degrees.

Celeste was a few degrees shy of needing a brace. With two years of growth still in her, the doctor wanted to watch the curve closely and asked us to come back for another X-ray six months later.

We returned to find that Celeste had grown four inches, a growth spurt that twisted her spine well past the point of bracing. The orthopedist sent us to an orthotist, who fit Celeste for a full-torso brace she would have to wear 20 hours a day every day. She could take it off to shower or physical activities, but she had to wear it all the other hours of the day.

And she did.

When the thermostat soared above 90 degrees and kids usually want to shed as many clothes as modesty allows, Celeste wore her brace. When kids at school asked her annoying questions about that “thing sticking out of your back,” Celeste wore her brace.

She understood that even though it wouldn’t fix the curve in her spine, it could slow the progression of the curve and help patients avoid surgery.

“I don’t want surgery,” I heard Celeste say several times.

Neither do I, I thought whenever she said those words. No need to worry, though. You’re doing everything you can.

Turning to Johns Hopkins Hospital

Another six months passed, and the time came for a follow-up appointment with the orthopedist. Again, I wasn’t worried. Celeste wore her brace faithfully, so I was certain it was working.

Only it wasn’t.

Celeste had grown another two inches, bringing the curve perilously close to the surgical mark. I walked away from that appointment questioning everything, certain only of my uncertainty.

The doctor ordered a new brace and physical therapy, but in my mind it wasn’t enough. Celeste was doing everything she was supposed to, but was still losing the battle. We needed another opinion.

Without talking about it with each other, Karen and I both had the same idea: the pediatric orthopedic specialists at Johns Hopkins Hospital in Baltimore. We took the earliest appointment they had, and in the intervening six weeks did enough research on scoliosis to write a master’s thesis.

I walked in with just one question: What could we do to avoid surgery and prevent the curve in Celeste’s spine from worsening? See a different orthotist to make a different brace? Try physical therapy? Pilates? Yoga?

If anyone could answer my question and guide us on the best path to avoid surgery, I knew it was the world-class physicians at Johns Hopkins. But the X-ray showed only one solution: surgery.

In the six weeks we waited for the appointment at Johns Hopkins, the curve in Celeste’s spine worsened to the point where surgery was the only option. Nothing else would work. Without it, the curve could progress to a debilitating point, and Celeste could face a lifetime of back pain, breathing difficulties, and heart trouble.

Doctors could not predict when the curve would stop, especially since Celeste has not reached skeletal maturity. It was best to operate now than wait for the curve to worsen. The sharper the curve, the more the surgeon has to manipulate the vertebrae and spine.

It’s time to worry, I thought.

Thankful for a surgical fix for scoliosis

We sat in the cold examining room listening to the surgeon talk confidently about the need to operate, but my mind was elsewhere.

We’re not here for this, I thought. I just want to know if we need a different brace or what kind of physical therapy will work. We didn’t come here to talk about surgery.

Only we were talking about it.

The surgeon was telling us how he would fasten screws to Celeste’s vertebrae and attach two metal rods to straighten her spine. She’d be in the hospital for four days and out of school for two months, assuming there are no complications.

But we’re not here for this, my mind pleaded. Her curve isn’t that bad yet. How could it have worsened so much in such a short period of time? It was only six weeks.

The surgeon explained the recovery, a process that could take a year. No lifting anything for several weeks, not even our cats. No twisting. No bending over. No physical activity. No basketball this season. No horseback riding. Her winter chorus concerts are out as well since she won’t be in school. We’d need a tutor. The list was endless.

Celeste sat silently as Karen held her hand. She couldn’t understand the full implications of what the surgeon was saying. She looked at me for reassurance. Children don’t need doctors to tell them everything will be OK. They need their parents for that affirmation, to be their strength in times of adversity.

But as the surgeon continued to explain the operation and recovery, a soft weep cracked my veneer of fatherly invincibility. Celeste heard it, and started to break down as well.

Pull it together, I thought. If Celeste is going to make it through this, she needs you to be strong.

We muddled through that appointment, and the intervening weeks have been a blur of research, paperwork, doctor appointments, sleepless nights, worry headaches, tears, and support.

In fact, the support of family, friends, our congregation, and co-workers has fueled us these recent weeks. It reminded me of how much I have to be thankful for.

I’m thankful we can treat scoliosis. Many parents have children who are fighting fatal diseases or conditions that baffle the world’s best doctors.

When Celeste fully recovers from surgery, her back will be straight and she will no longer need that brace. She’ll even be taller. The only lifetime restriction she faces is a ban on full-contact sports. So football and rugby are out.

I’m thankful to be close to Johns Hopkins Hospital. Some people live hours or days away from world-class medical treatment. Baltimore is a short drive from our house. We can barely make it through a One Direction CD on the drive, assuming traffic isn’t bad.

I’m thankful for the outpouring of support we’ve received. I have no idea how people without help could make it through a period such as this.

I’m even thankful for cracking in the doctor’s office. I felt silly at first because, as we all know, real American men don’t cry, especially not in front of their wives, children and doctors. But I stopped feeling silly after giving it some thought. After all, doesn’t every girl deserve a father who’ll cry for her?

And come Wednesday, as Celeste undergoes a long surgery and we wait impatiently nearby, I’ll be thankful for God’s watchful eye.