Prologue for my memoir Counting Smiles–stay tuned for publication details!

Sean was born screaming. He cried for a solid 2 hours. The nurses looked at me with sympathy. I wasn’t worried–I immediately attributed his screaming to the fact that I had called my belly Jillian Marie for 8 months.  

 That is the way my brain works. I am not a clinician or a scientist. I have always been a storyteller. When my life gets hairy or difficult, my brain comes up with a story to resolve the disparity. That is my excuse for why it took me so long to see the clues. That and the fact that Sean was fascinating. This hard-edged crying baby with his looks of intensity and insatiable appetite was so amazing. But there was something missing, something different about this baby. Sometimes it is hard to know what’s missing until it comes back, and then you think, Wow, I really missed this.

I am a little uncomfortable confessing that I didn’t know what was missing with Sean until he was eighteen months old.  Until then, Sean and I had been on this wild adventure of sleepless nights, hours of screaming, wanting to nurse constantly, and eventually eating so much that he would throw up. But mostly during this crazy time, I was developing a love for this child that I had no words to describe to another living soul.  I remember confessing to my mother, “I am so glad he is mine. He is so difficult, and I am so exhausted, someone else could be very frustrated and hurt him.”

I learned to sleep standing up, propped in a windowsill.  I learned to sing lullabies that lasted for an hour or more, making up verses and changing the words. And I learned to love someone that is difficult to love. It was a beautiful, scary, and long 18 months.  I knew most of the “phases” that a child goes through. Sean had the same phases as my older son, Spencer. But Sean’s phases seemed to begin much earlier and last much longer. Night terrors, screaming, and retching were daily occurrences and had been a part of our lives since his birth.  It had become my normal, exhausting, everyday existence.

I took every opportunity to keep my sanity. I made sure I had enough peace in my heart to keep my little boys safe. Keeping Spencer happy and busy and dealing with Sean were my priorities. It took all my energy. My days revolved around the moments of sleep that I could catch. As time went on, I expected we were just about to get out of this difficult stage.

One day, my husband asked if we wanted to accompany him on a three-hour business trip to southern Illinois. I was thrilled.  The chance to break up my routine and give the boys a little adventure seemed like a great plan. We decided to rent a car. Spencer, Sean, and I would play at a park while Bryan attended his meeting.  I was so excited to have a break in my darkening world. But my decision to go was a risky one.

When Sean was a baby, he cried, well, screamed from the first click of the buckle of his car seat until the buckle was released. It didn’t matter if the car was moving. Our pediatrician’s office was located outside Chicago city limits, a 45-minute car ride away.  Our church was 45 minutes in Northern Indiana.  Sean screamed the entire time we were in the car. Every time.  I spent time on the side of the road trying to make sure there was nothing pinching or poking my baby.  His screams were so intense, I felt like he must be in pain.  But the minute I unbuckled him, the screaming would stop, and he would stop crying within a minute or two.

I began to hate car rides as much as my baby did. I felt like my attention was constantly in the back seat and not on the road. To make matters worse, Sean would often scream until he threw up, and then continued screaming.

I had had an unfortunate experience to care for a baby that died of aspiration pneumonia while I was a health missionary in Bolivia.  It was a horrible thing. Every time my baby threw up in the car while I was driving, when his car seat was backward, I would panic. When Sean was three months old, I turned his car seat from rear-facing to front-facing.

 I knew I could get a ticket and I knew that I was potentially putting Sean’s life at risk, but based on the information I had, Sean was already in danger. My panicking when he threw up in the car and the screaming were just as dangerous. I hoped the front-facing car seat would make the ride less traumatic for both of us.  The screaming didn’t stop, but at least I could see his face and know when he was going to be sick.

By the time he was 18 months old, the screaming was still a problem. We never knew if the trip would be peaceful or not.

In addition to that, Sean retched at least once a day and Spencer tended to get car sick on long car rides.  I called the doctor’s office to inquire about giving the boys Dramamine for the trip. The doctor gave me the recommended dosages for the boys, and I gave it to them as we left the house. I sat back in my seat and relaxed. Since Sean was born, I learned to appreciate little moments. 

Sometimes I would take a moment when Sean was screaming and I was so drained of energy and hope, I would go into the kitchen, slice a lime, fill a glass with ice, open a soda, pour the soda until the fizz rose up and then fell back down into the glass. Finally, I would drink long and slow. Every step was a small break away from Sean. I used to say it was my Prozac moment. I could make a 3-minute coke and lime break fill my bucket.  It was my way to renew my tired body and spirit. 

So, there I was sitting in the clean rental car, taking my 3-minute renewal break, when suddenly Bryan was waking me up asking me to check on the kids.  I had fallen to sleep.  I slept for an hour.

Bryan asked again. “Are the kids ok?”

 I turned around and saw Spencer resting with his hand on his chin sound asleep.

Sean wasn’t asleep. Bryan asked me again, “Are the kids ok?  Something seems off.”

I looked back again and made sure Spence was comfortable.  Sean was odd.  That is the only word that came to my mind.  “Sean is odd.”

Bryan said, “I know, I can’t put my finger on it, but he is acting funny.”

I unbuckled my seatbelt and twisted around in the seat.  Doing a quick assessment: His eyes were clear.  His color was good.  No red cheeks. No fever. 

Then I saw it as I moved my hand away from his forehead, Sean looked right at me and smiled.

It took my breath away and I couldn’t speak.  It took me a full minute to tell Bryan.

“He’s smiling!”

“He’s what?”

“He’s smiling!”  And right there. That was the moment I realized in all our restless, monstrous, crazy months together, we had never seen Sean content.

                  Sean was looking out the window and did that little thing that most kids do, and Sean had not done until this moment: he was babbling and smiling.  Sean was happy.  For four hours, Sean was content.  It was the most remarkable and inspiring thing to see.

I thought that we had finally reached a milestone in his life and things would be much better for him. I can’t remember if I said a prayer of thanks.  Today, I remember to thank God for the little things.

But that was back before I knew that things could get so big that I would have to remind myself to breathe.  That was before I knew that Sean’s life would never be easy and being happy and content were rare gifts. When I think of this day, I remember that this is the day I started counting smiles. And that has made all the difference.