I hope she had peace.
I hope when she was waiting to go back, there was calm… none of the fear left from not knowing what to expect, of lacking the experience… simple calm and acceptance, a blip on the radar.
I hope she never felt alone. That her nurse that day was one of the good ones, the ones who let you know they genuinely care, even if they are running on empty. That she had someone to sit with before she went down, to hug and snuggle up to, to gently comb through her hair and whisper reassurances, whisper pieces of love… to send her off with a kiss, a seal of security.
I hope she never felt like a number. That her techs, nurses, doctors, all saw her for the person she was, good day or bad. That her nurses took the time to know her, to see who she was aside the vitals, pallor, and diagnosis… that the OR staff took the time to make her comfortable, to tease and love to lighten and warm the stark room and cold, sterile air. That someone took the time to hold her hand and tell silly stories as the anesthetics took over, her last feeling of connection.
I hope when things started going the wrong way, she was comfortable, that she was spared the tension and alarms. That any consciousness regained did not enlighten her to what was really happening… that there was still some calm in the drowsiness, that she wasn’t aware of the decision to move to ICU, that someone did what they could to squelch the pain and the fear.
I hope the staff remembered who they were dealing with as the problems began to increase and potential for recovery crept downwards… that they remembered she was only 21, a fighter tired from the constant battles, all but a child who, if awake, could be riddled with fear. I hope they allowed her husband, her love, to truly be with her as much as they possibly could, and that in his absence there was someone there to help her feel safe. I hope that amidst rushing and panic, they found a way to keep their words gentle and touch soft.
I hope they never, never, never gave up on her, that they could feel her fight shining through the fatigue. That in spite of the diagnosis, the deterioration, the hospice care, the prognosis… that they knew it wasn’t her time yet either.
More than anything, I hope and believe, I have to believe, that the last she knew of this world was love from her other half and warmth.
I just have to hope and know that despite spontaneity and panic, she had peace with the universe, despite how absolutely horribly and unfairly it treated her….
Because if she had peace, maybe someday I will too.
For those of you who are not part of the online medical facebook community, this has been an especially rough week for those of us in the mitochondrial disease family. It is not a total abnormality for children, teens, and adults with it to pass away, it is a hellish disease that really makes staying ‘healthy’ in general a major challenge… but the last week or two, its felt like rapid fire, not even giving us a chance to breathe before another set of green candles are lit. Each of these make my heart ache, truly. While some are expected, the finale of a very long and exhausting battle… others come from absolutely nowhere. None of these children deserve either fate, nor their parents and families… so we share our condolences, offer virtual hugs and shoulders to cry on, regrouping and hugging our family (online and in person) a little closer. But with these, there has always been a space for me. Yes, I feel horrible and sick to my stomach, but it still feels like a story.
This time was different.
We weren’t extremely close, but we were friends. She lived a state away from me, only about a 4 hour drive. We tried to plan a time to meet up in person, even talked about trying to go see Macklemore in Denver, but it never quite worked out. Mostly we talked medical, trying to find specialists who had even a remote sense of what we were dealing with, my sharing experiences and advice, offering support in whatever way I could. I have always enjoyed her dry but genuine view of the world and a sense of humor like my own.
The days before, I was definitely concerned… not to that level, but youll see. Christmas day, flipping through facebook as I tend to do while in the hospital, I saw what I guess is now the beginning. I wish, wish, wish her doctors could have been more of an accurate resource for her. Who knows where we would be if they had been competent. She had posted asking for ways to lower a fever… for those of you who do not have experience with central lines, a fever is nothing to joke with. Even a slight fever can turn bad, fast, due to the risk of getting a septic blood infection (central lines are basically a freeway from the outside to your blood stream… bad combination). Most doctors will give you a fever protocol, a set of rules to follow to take out any guess work… for example, I am admitted any time I hit 100.4, or even a bit lower (since my body is off). She was never given any rules like this. When I saw what she said her temp was, I pushed and pushed for her to go in. Were both a little stubborn too.
I kind of lost track of everything for a while after that, just sent a message wishing her luck, pain relief, and offering to help or explain anything I could…. A few hours later, I heard back, she asked for a description of the whole line infection process, what she should expect… and then the last words I ever heard from her. “how long until im better?”
Im sure neither of us knew the weight of that question, but now it feels like something that will never stop haunting me.
This wasn’t her time. The surgery was simple, one I have had more time than I can count in the last year alone. Not expected. Not thought to be a big enough risk to postpone or change the surgery. But that was it. That was her last sentence.
Im trying to be okay, but I don’t think I will be able to go under for my next surgery or procedure with the same level of comfort as I have had for so long. Part of me will always ache, for her, for her family, for her husband…
rest well, Melissa.
‘wake up your eyes, and darling your smile… the day is done, everyones gone now. you can taste every fire and hold every song. the world has moved, be quick enough to not miss it now… so wake up your eyes and darling your smile’