The Baby turned five this week. It’s crazy. All of those five years tend to blur together. After all, time flies when you’re drowning in medical chaos (just kidding…kind of). On the night of his birthday, our dinner conversation centered around remembering all of his firsts- the first time he sat up, the first solid food he ate, the first time he crawled.
The Baby got his first graduation certificate today. He graduated from the pediatric clinic where he has been seen since being discharged from the NICU half a decade ago. For the last time this morning, we parked on the roof of the parking garage and made our way to a clinic tucked away at a local Children’s hospital, armed with a bucket of candy and a small vase of flowers.
It may seem weird but I’ve been dreading this last appointment. It’s like the last chapter in a book I’m not ready to put down yet.
Four and a half years ago, I was standing in the NICU at the hospital, feeling overwhelmed with the constant stream of questions and information that was being given to me. I’d had this tiny baby in my care for three weeks, all of that time in the NICU, and now he was going home on oxygen. The adoption had happened so fast that we didn’t really have time to research anything. Our heads were spinning.
At some point, the person in charge of making our follow up appointments must have told me that they had referred us to the Thrive Clinic at Children’s, a clinic especially for preterm babies from birth to 5. I don’t remember agreeing but I must have blearily said, “Okay” because a couple weeks after discharge, there we were- wandering around until we found this clinic, located in a small corner of a strange building in a giant medical complex.
Memory fails me but it’s entirely possible that this was the first time I had left the house with The Baby, being that it involved oxygen tanks and monitoring equipment and I was scared shitless that something was going to happen to him.
I can’t imagine how I must have looked, clutching a tiny infant, shell-shocked and scared about what the future might hold.
This energetic woman with cute glasses and chin length hair bustled into the room and life hasn’t really been the same after that. I hadn’t done any research about doctors- it was pure happenstance that The Baby got assigned as her patient. She struck me as compassionate and authentic- I felt like I could be real with her, which turned out to be the greatest gift she could give me.
At the Baby’s first annual check up several months later, we had to see a developmental specialist who was going to check his development. She spent an hour “asking” the Baby to do things that he very clearly couldn’t do. “Grab the cube out of my hand! Come on, Baby!” while his head lolled back and forth as I propped him as best I could. I held myself together until we were ushered back to our exam room where the tears started to fall as soon as the door was shut. It was such a stark reminder of everything that he couldn’t do, all my fears about his development and future scribbled in red ink right there on that fucking developmental survey.
Jillian walked in and caught me upset. I told her how I was feeling and how I was feeling guilty for feeling that way.
“Of course, you feel that way. Typically developing kids start to give you some feedback at some point, so that all of the diapers and bottles and laundry seems worth it. You’re not getting any feedback yet so it’s hard.”
I don’t remember ever feeling as ‘seen’ as that moment. It was one of the hardest, lowest parts of my parenting and she made me feel like we were going to be okay.
That story pretty accurately describes how Jillian tends to practice medicine. It’s compassion and laying out options with a side of wisecracks to lighten the mood. She walked with us through so many hospitalizations, through our cancer scare(s), through that time the ER inexplicably had the measles and the health department freaked our daycare lady out, through the recent LGS diagnosis. The hardest part about parenting The Baby has been his medical needs and Jillian has guided us through every obstacle we’ve come up against. We’ve laughed about the specialist who carries her tiny Coach purse with only a stethoscope in it to the exam room. She’s referred us to specialists with the warning, “She’s brilliant but she’s very strange”. She’s been on top of referrals and prescriptions and therapy requests. I never feel like we’re bothering her.
I think back to that nervous new medical mom sitting in the exam room clutching her baby five years ago. That woman needed a guide, someone who could show her the ropes, help her understand what advocating for her kid is going to take.
We graduated from the Thrive clinic today and likely had our last ever medical visit with Jillian. I felt really sad as she read her card and said goodbye to The Baby but I also left with a heart filled with gratitude about the kind of mother I’ve become under Jillian’s tutelage. She taught me how to do this, how to be confident in my decisions, how to stand up for myself, how to ask for other options, how to have a sense of humor, how to have hope.
She and I could have talked shit about steering our kids through virtual learning all day but she told me that she had preemie twins in the next room that needed her. It was a good reminder that while I’m sad about having to try to find someone else who could hold a candle to this woman, I know that it’s time for us to move on so that another bleary-eyed mom clutching her tiny babies can begin this difficult, incredible, heartbreaking journey with Jillian leading the way.
Jillian, you are a good gift to the little people entrusted to your care.