I did an interview with the online magazine Mommytrack’d this week. The woman who interviewed me, Cheryl Lage, reminded me of an essay I wrote about the illness of my son Henry when he was an infant. I was surprised that she’d read it seeing as the piece has only been published in a very obscure magazine and in the blog section of my music MySpace page.
After that conversation, I decided to post it here.
henry aaron at 5
On January 17th 2003 at around 11:00pm I found myself driving to Boston Children’s Hospital on one of the coldest nights in memory with my 3 week old son, Henry Aaron strapped quietly in his infant carrier in the back seat. I can see the moment in my mind as a Polaroid snapshot featuring a former self, sailing along the southeast expressway toward the twinkly lights of Boston, wondering if I was doing the correct thing, totally unaware that his infant lungs were being secretly but stealthily invaded by a virus that was hours away from rendering him unable to breathe on his own. His heart was about to stop beating. My husband Michael and I were about to be the parents of a dying child and I had no idea.
Henry was born on Christmas Eve of 2002 by scheduled C-Section. In the 3 weeks that had passed since he’d been born we had admittedly done some foolish things. We conducted our lives as we always had, going out to dinner, having people over, introducing him all over town to our friends. We even took Henry and his 3 year old sister Zoe Mabel on a trip to visit my in-laws in NJ when he was 12 days old. It was the sort of hubris that one might expect from the parents of a daughter that had never had so much as an antibiotic for an ear infection and who carted that child around to recording studios, airplanes, restaurants, you name it, all without incident. As a parent, I have to admit that Michael and I felt pretty invincible as a result of our experience with Zoe.
It was so cold in Boston that winter. The January that Henry got sick, the city was hit by the harshest cold snap in recorded history, or at least that’s what people were fond of saying. I believe it. God it was cold.
Sometime in the evening of the January 17th, Michael and I decided to bundle up the kids and make the trek to Brookline so that we could all have dinner at our favorite sushi place, Fugakyu. The following day was our wedding anniversary and we were going out damn it! I was breastfeeding so it just made sense to take the baby with us. I had always done it with Zoe, and I was going to do it with Henry. As we sat down at our table, we ordered a large bottle of Sapporo, I popped half a Lortab (my incision didn’t hurt anymore, but whatever, right?) and prepared to chill.
Having been the parents of Zoe Mabel for 3.5 years, we were used to dealing with a kid who had a decidedly Zen approach to life and that’s what taught us to be so cavalier in our parenting style, but Henry wasn’t Zoe. And this was a simple fact from the day he was born.
I was constantly hovering over that child with saline drops and one of those suctioning bulb thingies to get the snot out of him. I was always aware that he came into the world with a low-grade chest gurgle that would not subside. “Is it getting better? I think so. I’m not sure…” His pediatrician and my obstetrician would tell me that this was common for a c-section baby. Because they don’t get all the mucus and other neato stuff of the womb squished out of them by the long violent struggle through the birth canal, they have to work it out of their systems in the first few weeks of life. Henry never did. Instead, the primordial ooze just sat in his lungs like a perfect petri dish while I unknowingly exposed him to a winter wonderland of family members, friends, waiters and salon attendants and all their eager germs.
Dinner at Fugagkyu that night was amazing, as always. Zoe and Michael sat across from me and I marveled as my 3 year old daughter maneuvered the chopsticks all by herself. Next to me in the infant carrier sat Henry. He seemed quieter that usual. Crankier than usual. He was spitting up. Were his lips a little blue? I need to suction him again, I think. Maybe I should breastfeed him. I’ll do both. Yes. The Lortab is making me jumpy now, I should not have taken it. Maybe we should go home. We hurried a little bit and did just that.
When we got back to our home in Quincy, we got the kids ready for bed and I caught up on a few phone calls. I checked in on Michael and Henry, my sweet boys, lying on the couch together watching TV. Henry still wasn’t quite right and I had already made a mental note to take him to bed with me that night, just in case.
At around 10:30pm Michael said something to me that I will not forget. Henry had been resting on Michael’s chest for the last hour or so and Michael had sensed something alarming about him. “It seems like every 15 minutes or so he stops breathing for 10 seconds or more and then starts again.”
I took Henry from Michael’s arms and propped him up, facing me. I looked closely at his little face, attempting to decide whether something was wrong with him or whether I was simply being a hysterical mommy. I had never really been one of those moms that freaked out over things, which in retrospect was a trait that came very close to wreaking devastating consequences for us. He didn’t have a fever. He was kind of coughing. He seemed limp like a little doll. Then he vomited, not like an infant, but like a very sick person who was trying to rid his body of something really bad. He wanted to sleep then, but it wasn’t like sleeping – it was more like passing out.
“What should we do?” I asked Michael as if he would have a magic answer that would make rational, perfect sense. Instead, I looked at my husband and saw something that looked like fear, something I had never seen on his face in the decade that I’d known him. Did we call the pediatrician first? I don’t think so. I got dressed and Michael went to warm up the car which was sitting in the driveway collecting frost in the frigid night air. He would stay with Zoe and I would bring Henry to Boston Children’s Hospital. Just in case. If for whatever reason we had to stay, we could call my parents to deal with Zoe’s school and stuff, but truthfully, I did not consider the possibility that we would be admitted.
I put Henry in his carrier with lots of soft layers of clothes and some blankets. I packed two changes of clothes for him and a bunch of diapers. The 20 foot distance between the house and the car delivered an icy blast that was almost unbearable. The inside of the car was warm. The temperature outside according to my lighted dashboard was 4 degrees. I began driving. I’m not sure what I thought about as I drove, but I did note that if I ever wanted to drive to downtown Boston in a jiffy I should do it at 11:00 on a Friday night. The lack of traffic was remarkable and surreal.
Thank heavens. I got there in about 20 minutes
I pulled up in front of the hospital where we were met by a valet. Wow, that’s pretty great all things considered, I thought. I braced myself to open the car door and made a plan in my head as to everything I would need to do in the next 30 seconds to get Henry out of the car and race him inside the emergency room doors. The freezing wind hit me in the face like a shovel and I ran as fast as I could with my newborn son toward the revolving doors and presumed safety. Henry and I did not leave again for 2 weeks.
EASY TO GET IN
At the front desk, the attending nurse asked me a bunch of questions about this and that, blah, blah, blah. As always, I made it a point to minimize the situation so that we could just get it over with and everyone could go back to their business. She made an executive decision to move Henry and me to the infant waiting room so that he wouldn’t catch bigger, badder germs from the older kids that were shuffling around the regular waiting room. The attending physician would be with us in a little while. Or 3 hours. Whatever.
Henry and I sat in a dark quiet room with an old television humming in a corner, casting a sickly blue light over us and the other family that was waiting. He was very still yet strangely unsettled. I tried to nurse him but he didn’t want to. Then he vomited forcefully and fell limp. The other family left as I apologized. I shook him a little and his tiny head lolled back and forth on his body lifelessly and then he snapped out of it and began to whimper. What was that? Why is he doing that? Did that just happen? I changed him into a fresh set of pajamas and wondered when a doctor would find us. I fed him a little bit, as much as he would eat, but then it happened again. Vomit, pass out, whimper. I stared at him uncomprehendingly: What are you doing?
I went out into the hallway to see if I could run the situation by a professional. What time is it? Is there anyone here? I wandered around with Henry in my arms for awhile and finally ran into a nurse. “I think he needs help” I said calmly.
I don’t really know what happened next in terms of a linear timeline all I know is that whatever it was happened very quickly. I tried to explain to the nurse what I thought was happening and she listened patiently. We adjourned to a sad old examining room, which contained a glass jar of tongue depressors, a scale, metal table with a paper runner, some alcohol swabs and not much else. A bunch of other people came around poking at Henry. They tried and failed to hook him up to some weird antique computer that looked like it was powered by an abacus and some pulleys. They brought me down to another chilly, antiseptic room to wait for a doctor. The doctor came. I now tried to explain to her what had been happening down in the waiting room when just as the words were forming, I felt Henry going limp in my arms again. He began to turn blue. “THAT! That’s what he’s been doing!”
The doctor looked at him in horror and then back at me. She grabbed him and began doing little baby chest compressions on his little baby chest with 2 fingers and almost as quickly as it happened he snapped out of it. Now the team of nurses brought out their A game. They rolled in a very modern looking machine to check the oxygen levels in his blood, heartbeat, etc and as they hooked him up, I felt a sense of okay-ness. This was all going to be taken care of, right now, by the best medical staff possible at one of the top hospitals in the entire world and then we would go back home to bed. I was getting tired.
I think I went deaf at that point. There are no sounds to go with the video playback in my head. There were rows of red numbers lit up on the computer screen. I saw a number on the computer go down to 34. 34, what does that even mean? I observed the nurses exchanging subtle, worried glances with each other and the doctor. Numbers, schmumbers… what were they seeing? And then in a flash, the air got sucked out of the room as a true sense of panic took over. Somebody picked up the baby, who was suddenly naked and they began running down the hall. Instantly, people were swarming everywhere. Where’s everyone going? I followed the silent teeming throng down an endless fluorescent hall to a very high tech room where my infant son now lay as a dozen or so women began attaching some very intimidating equipment to him. IV, oxygen mask, wires and sticky things. They told me they were sedating him. They seemed to be working very hard, like a team of Hawaiian watermen steering an outrigger canoe in a monsoon. Then it got quiet for real. I noticed that I was not crying. I just watched everyone doing what they were doing and I was consumed by utter confusion. I felt someone take my hand and lead me back into the hallway away from the unbelievable thing that was happening in the room with my new baby in it.
“Where is your husband?” The nurse asked in a voice that was surprisingly matter of fact, but not unkind. I told her that he was at home with our daughter but he could come in the morning if necessary. “Do you have any other family in Boston?” she pressed. I did, I said. My parents were in Dorchester and they could come help in the morning, again, if necessary. The nurse looked at me very sternly as if to snap me out of my cluelessness and gave me a set of instructions: You will call your mother and your husband right now. Your mother will go to your house and stay with your daughter and your husband will come here. How quickly can this happen?
I told her I thought an hour.
“Is he going to die?” I asked. “I don’t know.” She replied.
I STOPPED BELIEVING ON THAT FREEZING NIGHT
“Mommy. Henry is sick.” It was 4:00 in the morning and my mom had answered the phone in half a ring. Of course she did. A mother spends her whole parental life sleeping with one ear on the phone, always hoping that it will never ring at 4:00 in the morning. January 18th spelled the end of her lucky streak. Now that I think of it, I don’t believe that to this day we have ever spoken about what she was thinking as she roused my Dad, got dressed and drove down Morrisey Blvd in the freezing darkness to send the father of her grandson off to face the unthinkable.
As I waited at the hospital for Michael to join me, I sat alone in a deserted hall at the end of a series of crates that reminded me of the amplifier flight cases lining the walls of our rehearsal space. I rocked back and forth reflexively, which I would have thought was something people just did in movies, but apparently that is what the human body does when it runs out of other things to do in times of extreme stress. So I rocked and rocked. And then I started going absolutely mental in a very wordless, tearless way and so I attempted the exercise that I had learned to do as a child. I prayed. I shut my eyes very tightly and I tried to communicate with God, begging him to save my son and make this whole nightmare go away. I tried really hard. Sadly, there was nobody there. I had abandoned that portion of my innocence many years before and as my sister Patricia reminded me a few days later over a paper cup of tea in the hospital café, you can’t simply make those kinds of connections materialize just because you’ve hit a rough patch, especially with God.
Perhaps there are atheists in foxholes. What I know now is that in this life, sometimes people end up alone, truly alone, if only for a moment.
Michael got to the hospital and we stood over Henry’s unmoving body, helplessly watching the staff literally going about the work of saving our son’s life. Michael hugged me really hard and for the first time in the entire ordeal, I began to glimpse reality, the gravity of our situation. Henry was lit up from every angle by the brightest lightbulbs I’ve ever seen. His chest heaved up and down rhythmically and mechanically due to the fact that he was now intubated and unable to breathe on his own steam. We were all moving to the NICU and I’d barely even figured out what was happening.
Living in the NICU is the closest I will ever get to living underwater. Dreamy, quiet, dark-ish, but not too. Softly whirring machines, everyone with a purpose, hovering silently over spit-shined marblesque floors. Deceptively beautiful but for all the tragedy and sorrow and desperate God-bargaining being lived day–to-day underneath the aura of peacefulness.
Henry was put into a quarantined, glass encased room so that he wouldn’t pass his infection along to any of the vulnerable preemies. It was decided that he was probably suffering from RSV, a nasty bronchial virus that northeast moms are always warned about with their winter babies, but it was too soon to tell until the tests came back. The minute we set up shop in our glass house, my entire body heaved with an unexpected surge of grief and I cried as hard as I ever have in my life.
The regular carousel of cardiologists, nurses, pediatric residents and their ilk was somewhat comforting, but we lived in a constant state of limbo with none of them being able to say for sure whether Henry would live or die. This was just a new fact of our lives. On day 2, there was a problem detected with his heart. On day 3, he developed bacterial pneumonia. On day 4, our favorite nurse, whom we had come to depend on like oxygen informed us that she was going on vacation only to be replaced by a testy, jaded underling.
My sisters and/or parents came every day in shifts, but the hugs and smiles and words of support belied a secret nervousness that Henry would not be coming home. It was a strange contradiction. He looked so big and plump because of the steroids and he appeared so peaceful because of the sedatives, but inside his body a war was raging and it was unclear who (or what) was winning.
I learned a lot about doctors in that first 72 hours of NICU life. Mostly I learned that they are just like us, with all the insecurity, arrogance, humility and self doubt that goes along with every other field. They just have way bigger student loans and if they blow it on the job, people can actually die. Okay, maybe there’s a small difference between them and us.
At around day 5, Henry the little fighter came off the intubtor and moved down to the next rung of breathing assistance apparati. Michael began going home at night to take care of Zoe who had been a total champ, and I stayed at Children’s in Henry’s glass house. We ate hospital food every day and took hospital showers in the shockingly meager family quarters (I’ve heard that they’ve since renovated extensively to accommodate exhausted family members) and most nights I would go to the hotel next door, get a drink and read for a little while. Then on day 7 he stabilized enough to move to the recovery section where his lungs were strengthened by regular nebulizer treatments. My Mom came on the last few nights to stay with her sick grandson so I could go back to our house in Quincy to cuddle with Zoe & Michael and sleep for a few hours.
Around day 10, I walked off the elevator on my way back to Henry’s room and ran into Fr. Daly, my favorite priest from the parish that I grew up in, St Gregory’s in Dorchester. I had not seen him in close to a decade. He said that he’d heard that Henry was sick and just wanted to come by to show his support for us and pray over the baby. I cannot remember a single gesture that touched me so deeply, and I experienced many words and deeds during our stay at Children’s for which I was very grateful. Hey, maybe that was the thing that worked in the end. Who can say?
And then it was over. On day 13, the nurse said we were free to go and we packed up our things and walked back out the giant revolving door into another arctic winter day with Henry in his carrier. We all slept at home together that night and never looked back.
Henry is now 4 years old and is as strong as an ox. As it turned out, I have spent much of my time since then fighting a battle to keep him alive, not because of his health but thanks to his penchant for walking on the wild side. Let’s put it this way: his nickname is Osama bin Henry.
I’m not sure that the experience made me a better person. I am still prone to fits of selfishness and impatience, the same as always. I hope that having gone through the experience of having a sick child has made my family stronger and made me, personally, someone of more depth. I hope I am a better Mommy. I wrote a song about all this once called In Clouds and to this day, I can barely get through it when we perform it live without exploding with sadness and rage. The only thing I’m sure of is that I am so grateful that I am able to hold my son’s hand every day and that our family came out the other side with 100 more stories to tell.