When good news doesn't feel good

Dr. T popped his head into the echo room after we had been there for over an hour already. He took the wand from the tech, moved it across Griffin's chest and made an off the cuff remark that the imaging planned for the following day would be an indicator as to whether or not surgery was necessary right now. The heart inside my own chest skipped a beat. I told him, "We came here for surgery". To which he replied, "Yes, but if we don't need to operate right now that would be good news". Good news, right.

The frantic planning had started in August. There was no way for me to wrap my head around the logistics so I simply plowed through them, one by one, in 15 minutes increments, waking up extra early before work to complete housing applications for our Boston stay and search for 3T pjs with buttons down the front to make room for lines and IVs. The emotional, mental preparation was equally challenging and draining. I decided I would make a book for Griffin to lay out for him in a familiar and comforting way what was going to happen in Boston. But what words should I use? Operation? Surgery? Cut a hole in your chest? What images should I include? A needle? An anesthesia mask? And so the quest to figure out how to tell my three year old son he would be having open heart surgery continued.

The conflicting information rolled in. "You should start talking about the surgery two months in advance". You should tell him three days before you leave, as he is three years old, but wait until you arrive in Boston to tell him about the surgery". "Tell him the day before you leave." These responses were all from his health providers or mental health professionals that work with kids. It is a taste of the alternate universe we stepped into when Griffin was diagnosed in utero with a life threatening heart defect. People that have rare illnesses themselves live in this universe and surely families who have children with medical complexities reside there too. In fact, I had known this universe existed before we found out about Griffin's heart. I've spent my career in Genetics, which is of course a place where the rare is common. I would enter this space of obscurity and confusion while working with families and try to untangle some of the knots with them. But at the end of the day, I left the alternate universe and went home to the one in which most people live. 

This planning went on for four months. By Thanksgiving, I ithe four of us in our little family were as best prepared as we possibly could have been. The Grandmas were ready to swoop into our home and care for our daughter. A calendar outlining the activities and playdates I had lined up for Carly for the month of December hung in the kitchen. A Meal Train was to provide the Grandmas with food for several weeks. And the surgery book I made for Griffin was done. Shortly after I started work on his it dawned on me that Carly also needed one to deal with the separation from her family and so I made two. We decided that one week in advance would be the right time to have the talk with our kids and it had gone remarkable smoothly. Curt and I rehearsed the specific words we would say (Griffin needs to go to Boston for an operation so that the doctors can fix his heart). Curious George helped with his hospital book and the kids pored over their special books I made. 

Dr. T's comment felt like a forewarning. It stuck in my head as we piled our stuff and our Griffin into the stroller and headed out of the hospital for the day. My relationship to the city of Boston feels a little love hate. While on one hand a team of brilliant doctors there saved my son's life, on the other hand I wish I was never forced to spend a night there or enter the hospital again. Surely this isn't the City of Boston's fault. But that winter Griffin was born had been a snowy one and the walk to and from the hospital wet, cold and miserable. This time, it seemed, the weather was on our side. December yes, but mild with holidays lights and snow-free sidewalks. We pushed the stroller to a neighborhood bar and plopped down to get food in him before the 7pm cut off time. He'd be under anesthesia for the majority of the next day. 

In the waiting room the next morning was us, a South American family, a family from X and what appeared to be a local Boston family. All of us, in our own ways, had been preparing for this day for months. Each parent's face showed a different version of tense. But Griffin is a surprisingly easy patient, making it easier for his parents and nurses at times like these. He drank down his icky put-him-to-sleep cocktail with no complaint. This I hate about parenting a child with a serious medical condition - you have the see them, be with them, and care for them in times when their core being is medically altered in some way. It's like a different version of the child you know. We tried to act normally and chat while his eyes starting rolling around and he gradually lost control of his arms and legs. Within a couple minutes he was asleep and within less than one minute more, we had said goodbye. The saying goodbye and entrusting other people, strangers essentially, with your child; this I also hate.

Then the waiting. A crucial piece of the alternate world. Maybe some parents find a peaceful place in their heads that they inhabit during the waiting. Me, I become useless. Staring off into space, can't carry a conversation, can't read a book or even check my phone. My husband and I wander to get a cup of coffee, get some soup in the cafeteria for lunch, but we don't want to be gone for too long or stray too far from our son. The waiting room becomes the home base for these families, ours included, from far flung places across the world. We offer maybe a smile or a shared look of worry, but don't start a conversation. I admit that I can't bear someone else's weight in those times of waiting and I couldn't muster up the empathy if I tried. 

After five hours Dr. T appears in the waiting room. Come with me.

Dutifully, we followed him into a small meeting room, chairs with their teal, plasticky seats lined against one wall, a white board hung on the opposite one. Dr. T stands at the whiteboard, Curt and I gingerly sit on the teal.

We all agree, it is not time for surgery yet.

We knew that the head of cardiology was in there with Griff, along with Dr. T and an additional cardiac interventionist who had worked on Griffin when his heart was the size of a grape. Three of the most brilliant minds who care for us in the alternate universe. And they all agreed. No debating Dr T said. Curt and I looked at each other and smiled. We looked at Dr. T and smiled. Curt and I hugged. But it was a show for Dr. T, an act performed by two parents in the alternate universe acting how they knew they were expected to act. Dr. T drew his heart pictures on the whiteboard complete with numbers, arrows, equations. My mind was stuck. No surgery.

Let's go see him Dr. T said and we followed him back to our son. Lying on a hospital bed, groggy, and agitated, our Griffin. For the good part of an hour I put on my Mom hat and helped as the nurse tried to keep Griffin still as you must lie flat for several hours to avoid serious bleeding and for your arteries to heal. Tell this to a three year old who doesn't do well coming off of anesthesia.  Meanwhile, I was starting subconsciously list my carefully laid plans I would need to undo. 1. XXX 2. XXX. During that time we also told Griffin that we would not need the operation yet. I was starting to realize that the yet was really getting to me. 

We needed to call the Grandmas, the ones holding down the fort back home and taking care of our daughter. I made the call and got my mom. She sounded flustered and distracted. I realized that was the way I usually sounded when answering that phone in my house. It was an immediate sign that they were having a tough time with Carly. Griffin did really well and we are with him in recovery now. And we have good news. He doesn't need surgery yet. She responded with some disbelief, none of us had even thought this might be a possibility, and congratulated us on the good news.  She wanted to share the news with my mother in law and handed the phone to Carly so I could share with her. Hi babe, I said. Griffin is done getting pictures taken of his heart today. He's still a little sleepy, but ok. We got good news. He doesn't need to have the operation.  She was 5, extremely intuitive and highly sensitive. She understood the ramifications almost immediately. Those plans I had so carefully laid. 

But you promised I could come to Boston! Daddy is coming home and taking me back with him. 

No babe, the plans have changed and we will be home soon.

You liar! You promised I could come. I don't care what you say.

I hear the bang of the phone being thrown. I can easily picture the scene as there have been so many others like this before. But this one really hurts, stings, immediately. My baby, the first one, is in a panic and I am so many miles away. Lots of muffled shuffling going on over the phone; some bumps and bangs. I can tell my mom has picked up the phone from wherever it was thrown because I can hear her voice but it feels far away. I can make out my mother in law's voice too. 

Carly, it's ok. Carly, please come back. It's ok honey, I know your upset. 

I can hear Carly too, an awful sound of hysterical crying and screaming mixed together. And then it abruptly stops. My mom puts the phone to her ear and says, Carly just ran out of the house and down the street. We'll call you back.