It was a long time ago, now. Sixteen years. It was the grimmest of grim. We held on to hope when there was very little to hold onto. Every single day, and the days between those, every visit from each of the doctors pushed us up and down the emotional roller coasters.

Now I understand that people who are relatively balanced don’t freak out. Well, some do. The actual mechanics of surviving tough times involves breaking the experience down into edible chunks – the brain can only process so much at once – that’s how we roll. Here in 2021, we have to do this to try to adapt and keep adapting to the uncertainty that we have going on at this moment. If we think about the macro, it’s just too much.

That was what it was like in 2005, in Rob’s final days with us. We couldn’t think about the macro too much – the micro was changing every day with unexpected tribulations popping up at every turn. In the nearly six weeks in the hospital we had changing prognoses, surgeries to face, prayers for recovery, when recovery wasn’t coming, listening to theories and hearing the words, “we’re in uncharted territory…”

What were we supposed to say? Give up? I’m not a “give-up” kind of girl – wasn’t then, and am not now. I wanted them to give everything to helping Rob survive the situation that can only be described as a huge medical debacle. But, we don’t give up on 17 year-old kids – not mine, at least. I was in that mindset the whole time.

Maybe the doctors went around the corner and shrugged their shoulders, but at least they didn’t do that in front of me. You see a lot when you’re practically living in the hospital with someone. You begin to adapt to the milieu. I was trying to make the best of things for Rob – get him what he wanted – what he needed – and be his mama-tiger advocate – always.

We had endured having to move all our stuff out of his room when he went off to surgery – because they needed his bed – my response was “where are we going to put his things? all the things that have been keeping him sustained for the last month?” The answer came back, “We’re sorry, we don’t have an answer for you… You will have to move them out…” I said, “He’s going into surgery! Our house is an hour away! You expect me to do this NOW? What can you be thinking?” The people were acting like I was becoming violent or something because I didn’t just say, “OK, thanks…” It was maddening to think that they had so little empathy for a patient – even financially, they had made lots of bucks off of his stay – that was my cynical thinking at the time… He was an “insured” patient…

Finally, the charge nurse and the nurse manager came in and said we could store his things in their store room – possibly they could get me a bed at the Ronald McDonald House, if there was room… So, that is what I did… I was so shattered by then, I could hardly tell what time of day it was. That’s what happens when your child has surgery that takes hours long – and you come out and it’s the middle of the night. You don’t know where they will take him or where you will find him next… It’s very unsettling for families.

I tried to be nice – and mostly was – but I also got very frustrated at the chaos at times. I mean, how could they possibly keep making screwed-up mistakes? Grrrrrrrr.

Maybe they weren’t but, my baby just wasn’t getting any better… C’mon…

He survived that surgery, and eventually was put back into a regular room. Little did we know this would be temporary. Time sequences become confusing in memory.

In trying to balance the days and nights, sharing the only bed in his room, by trading off, it was each time, when leaving – agonizing. Returning, each time, there was the re-entry and orientation to what the latest situation was – trying to get information was sometimes like pulling teeth. If only, the iPhone had been invented then… Handy recording could have helped.

Rob was moved to a “step-down” which was actually a “step-down” from the ICU. More like a critical care unit. For the last days of his life, he was there. It was a large room, and visitors were permitted. His friends came to visit a couple of days before he died, but we didn’t know that he was close to his final day – he was just sleepy and non-responsive. That should have told us something.

One night, as I was leaving to hand off to his dad, Rob said to me while I was hugging him to say good-bye, “Mom, I want you to be with me when I die.” It took my breath away. My reaction was saying, “You’re not dying… sweetie… you’re going to be okay once we get through this…”

He was less in the present, and visiting the path to the future, as we did not understand, but I now know. I remember washing his hair – helping him shower – and he was barely awake – so weak at that point. He had not really eaten much food in days. They had begun to give him TPN (which is nutrition via IV). In fact in retrospect, the sequence of events that happened over the next few days led to his event horizon.

That was a term he described once to me while he was looking at the string of pulmonary function test results graphed together… This was ahead of his being approved for the transplant. He said back then, “I’m getting close to zero – that’s when I end.” That one got me. He was a very analytical guy – but insightful and emotional – just like me.

This time of year I cannot help but revisit the memories of the past – those days leading up to his final day and the end of his earthly journey. I try not to feel badly. That’s hard because, I’m human, and I’m his mom, and we are selfish as humans – we miss our loved ones when they go – and if it is our babies or our big kids – that especially hurts…

So that wish was his command. I was with him when he passed on, holding his hand, lying across him in his final hospital bed in the ICU. It broke my heart. The drive home was the longest drive – I was alone – I drove the route the last time from his hospital room back to the last place he lived. Sometimes, I wonder how I did that – how did I muster the strength in the wee hours to make that last journey, when just a few hours before, I was driving like the wind to get down to the hospital where he had been taken to the ICU and placed on life support…

I didn’t get to see him that day, conscious, or where he would be able to respond and say goodbye. I found him ready to leave. Systems on idle. Ready to shut down for the big sleep for the journey to his next place in the universe.

I often think when I see the dragonflies that visit me, “why dragonflies?” Because of their beautiful furious short lives, maybe? Because they are ferocious, yet gorgeous? Because they are friendly to me? Who knows? But dragonflies tell me that he is okay – he is still okay – and will always be okay.