"You tell me it gets better, it gets better in time
You say I'll pull myself together, pull it together
You'll be fine
Tell me what the hell do you know
What do you know
Tell me how the hell could you know
How could you know
'Til it happens to you, you don't know
How it feels
How it feels
'Til it happens to you, you won't know
It won't be real
No it won't be real
Won't know how it feels"
- Lady Gaga
I don't know why I'm doing this. Writing this and revisiting this time is incredibly painful. Furthermore, I'm not sure why I'm posting it because it isn't flattering. Nonetheless, here I am, writing and publishing. In therapy, one of my goals is to go through the grief and not action my way around it. That is, face it head-on, do justice to the tragedy I've experienced, and come out on the other side having honored Jude and my grief. I will live a happy and full life, always carrying Jude in my heart.
I have yet to write directly about the last few days of Jude's life. Ariel wrote the updates on the 13th and 14th, as I could not. To explain my behavior, I'd like to describe the mania of those days. Here is a quick recap.
This was my first visit to the hospital after my run-in with Nurse S and the last time I saw Jude conscious. This was also the day of our triumphant meeting with the doctors and nurses, who agreed to show us some flexibility and leniency, which we never had an opportunity to utilize.
Jude was rushed to surgery to cannulate to ECMO. When I arrived at the hospital, he was already in the OR. Ariel and I spent the afternoon and evening in the hospital until we finally saw him at 8 p.m. in the MSICU. What a day to decide not to wear a bra.
I came home to a pretty drunk and distant Trevor. After the day I'd had, I expected him to kiss the ground I walked on, but he didn't. He still thought we might leave for the Jersey Shore on Saturday. As Jenna, our PACT bestie, pointed out, it's hard to internalize the severity of the situation without seeing the whole ECMO setup in person. I hope that most of you reading never have to see your three-month-old baby, or any loved ones, hooked up to an ECMO machine.
The day was mostly uneventful. Jude had his first seizure overnight and continued to seize throughout the day. As he was sedated, the seizures were pretty subtle. They were cute in their own way. It looked like his little left hand was keeping a beat.
Two different researchers approached us about including Jude in a study. One in a way that felt very bad and exploitative, and another, Dr. Ravi (different than the NICU Ravi), in a way that felt meaningful. He told us that just hearing him out was a gift. We agreed. Of course, Jude would never come to participate in the study.
At the end of the day, Adam, Ariel's husband, met Jude for the first and only time. Jude was unconscious in his rainbow medusa look. He wasn't really Jude anymore. Honestly, that detail breaks my heart. I wish Adam had gotten to hold the Jude I hold in my memories.
As we left, Dr. M gave us hope. He was playing the odds. There were plenty of benign reasons that Jude would have seizures. We knew he never lost oxygen during the surgery and thus had reason to be optimistic. We left feeling hopeful. I'm so grateful for that extra 12 hours of hope he gifted us. Thank you, Dr. M.
I came home that evening to Trevor and shared my hope. We made up for the previous night's argument. That day, he'd taken one for the team with my Dad's boomer technology incompetence. It was certainly annoying and not what he needed to deal with that day, but the story made me laugh so hard that it was worth it to him for the joy it brought me. Also, Dad, I know this isn't necessarily the role you'd have chosen, but thank you for making me laugh that night. I love you so much.
I woke up in the morning with hope. Based on the previous day's uneventfulness and the plan to send Jude to his final surgery on Friday, Ariel and I chose to take our time getting ready. I went for a run, and she went to Figurella. When Ariel called, I was arguing with Trevor about the vacuum. It needed a new filter, and I asked him to make it happen. He pushed back that I was just as capable of doing that myself. Then, I answered the phone.
In 2016, The 21st Century Cures Act was signed into law. It mandates the immediate electronic availability of test results to patients. That is, on Jude's Patient Portal, which Ariel checked habitually, any test result would be uploaded immediately before even Jude's primary care team could see or review the results. As such, Ariel was the one to deliver every piece of bad news to me.
I'd come to recognize the tone in Ariel's voice when she was about to tell me something hard. While she isn't an expert in every specialty, she could always temper my expectations and ballpark what level of horror we were in for.
She was the one who told me the results of the initial face CT scan. I've come to refer to this as Holoprosencephaly Day. She prepared me for the reality that we may have to make an unimaginably difficult decision to redirect care and say goodbye to our baby boy when he was only three days old. We dodged that bullet by the skin of our teeth.
The next time I remember that tone in Ariel's voice was when she called to report his Ophthalmology results. Again, she knew this was bad news but didn't have perfect clarity of the implications neurologically. She prepared me for difficult conversations to come. Once again, we beat the odds and lived to see another day.
On this Thursday, Ariel called and told me Jude had had a massive stroke. At that moment, I knew this was the last time. Jude hadn't dodged this final bullet. It hit him smack dab in his brain. In my heart, I knew this was the last time Ariel would call me with bad news because Jude's fight was over.
I got off the phone with Ariel and told Trevor the news. He held me as I cried and promised there would be a working vacuum when I got home.
I dressed to the tens as I'd been doing for the past visits. Ariel and I laughed that with so much out of our control, we'd be damned if we weren't remembered as the beautiful sisters who fought like hell for their nephew-son. They'd say, "I bet they have hot husbands and were cool in high school. I bet their brother is also hot and has an even hotter wife." We do, we were, he is, and she is.
When we arrived, Dr. V and Dr. R greeted us. They told us a team planned to sit and chat with us in the conference room they created out of someone's workspace. They rolled their eyes when we mentioned the gorgeous conference room in the NICU. Apparently, not all ICU conference rooms are created equal.
We waited in Jude's room as the team talked. We talked about everything. What was the likelihood of X, Y, and Z. We formed questions we'd force the doctors to answer. We planned to insist each specialist think of Jude's whole prognosis, not just their specific expertise. We were ready to have the hardest conversation of our lives and confident the outcome would be to suspend care.
Jenna came to see us then. She'd been in the room with the team. Jenna is the NP from PACT and the most valuable support person in our decision-making team. And also she just showed us general friendship. She hugged me when I needed it and laughed when I joked. She is one of the most incredible human beings I have ever met. Our relationship with Jenna was so established that on her days off, other PACT representatives would apologize when entering Jude's room for not being Jenna.
Until then, Ariel and I generally represented our family unit at big meetings and reported back to Trevor as he held down the fort with our home and daughter. We told him what was going on and that we were about to go into a meeting with PACT, general surgery, neurology, ECMO, etc. I told him he didn't have to come and we would tell him what happened. He said absolutely not. He understood the severity of this final blow and would be damned if he weren't there to support his son this one last time. We told Trevor we'd send him the Zoom link and meet him in the conference room. He asked for a few minutes because he was naked. The three of us ladies on the other end laughed and agreed.
We entered the conference room with ten or so doctors, nurses, social workers, etc. Ariel did her spiel imploring everyone to think of the big picture and all of Jude's diagnoses and not just their own specialty. She handed the floor to Dr. R, who asked if we'd seen the images of the MRI. We had not.
To go on a brief tangent here, you probably don't think of it, but the mundanity of life continues to exist even during these maddeningly tragic moments. I had to excuse myself as they struggled to get the images on the big screen to pee. In tragedy, our bodies continue to urinate, screenshares require multiple advanced degreed individuals to launch, and vacuums break. You can't just put up a life status that says, "I'm unavailable, dealing with my dying son. I'll get back to you and life as soon as possible."
When I returned, the screen share of his brain MRI was up. Dr. R told us that the left side of the image was the right side of his brain, and the right was his left. It seemed pretty consistent with our world at that moment. Right is left, up is down, life is death, and nothing makes any fucking sense.
Even without a medical degree, it was clear that the images we were seeing were devastating. As Dr. R went up layer by layer, the black mass on the right side of Jude's brain grew larger and larger, nearly swallowing the entire hemisphere.
No one in that room tried to convince us to continue life-saving support. Jude's prognosis was bleak. He wouldn't even be a candidate for surgery the next day. After a stroke like he had, he'd need to be on ECMO and stable for another couple of weeks before we could even consider bringing him to the OR for his extensive surgery. At that moment, we decided to take him off ECMO the following day, giving ourselves time to say our final goodbyes.
After that meeting, Ariel and I left for our familiar haunt, Time Out Market Boston. Trevor and Adam made their way in. We ordered round after round from our very familiar bartender. We ate, drank, cried, laughed, and then went our separate ways.
Trevor and I got on the ferry home to Hingham. It was Thursday evening, and the ferry was packed. We waited in a long line for the bar and finally ordered our drinks. As we went to pay, the credit card machine took its sweet time. Thanks, Toast (wink wink). I could feel the man beside me huffing and puffing, rolling his eyes, and dramatizing his impatience. I turned to him and said, "Do you have something to say?" He snarled at me, waved a twenty in the air, and said, "This is why you always carry cash."
As a solid millennial, I generally have an issue with not-my-boomer's opinions on how I manage my money. The generation where a middle-class single-income family could put a down payment on a home in their twenties doesn't have a leg to stand on. Except for my boomers, they've given me everything. I told him off and walked away, still seething.
As we walked off the boat, I saw him a few heads behind me, scowling and ugly. I lost control. I have no idea what I said or what he said precisely, but I know something to the effect that he's an asshole, and I'm a crazy bitch. Then I slapped him. In front of a huge crowd of commuters. I shouted to the masses, "For the record, I took my son off of life support today." Trevor grabbed me and quickly got me out of there.
I'm not proud of my actions. I do not condone violence and do not consider myself a violent person. But at that moment, I was no longer myself. I woke that morning with the fight of a mama bear determined to bring her beautiful son home. I came home, having lost my months-long battle to save him and all the hope and fight that went with it.
I recognize that I'm putting this out in the public, where anyone, including my employers, can read it. A slap is NSFW (not suitable for work). Grief is messy. Grief is NSFW. Losing your child is NSFW.
I implore anyone still reading to remember that everyone in the world around you is dealing with their own shit. It might be trivial, and it might be momentous. So, check your impatience, check your privilege, give each other the benefit of the doubt, and try to be kind.
That guy was a jerk. His transgression did not warrant my reaction, but I'd hedge that he's a jerk in many of his day-to-day interactions. I like to think he went home later that night and told his wife, and she smiled and got to live vicariously through me. I'm ashamed of my actions, but I forgive myself too.
Lauren, our neighbor and chosen family, had picked up Stella from daycare, so we went to her house. The rest of the night is a blur. Thank you, Lauren, Brian, and Rebecca, for caring for us that night. We were in no condition to take care of ourselves or our daughter. I don't remember the details, but I'll always be grateful you showed up for us.