As much as I hone my writing skills, I don’t believe I will ever be able to fully capture in words, the beautiful tragedy of the medically complex life.
Most outsiders would see only the suffering and the limitations. But what is missing from that perspective, is the striking beauty and unique opportunities that stand in opposition to the hardships. The ways that profound disability presents different experiences than you ever dreamed of. The way that the often desperate need for support seems to magnetize you, pulling in a network of incredible people to assist. The way that each emergency shapes you, molds you, strengthens you into a person stronger beyond your wildest dreams.
A couple Thursdays ago, I took Oliver and his brother hiking by myself. It was beautiful day. Cool and still, I felt unusually at peace with life, there on the beach with my two babes.
As a twisted sort of luck would have it, my back had been in terrible spasms causing migraines that week, so I had decided to push Oliver in his medical stroller as the trail we were on was graveled. Had he been in his pack on my back that day, I wouldn’t have known that he had started to seize.
When I noticed the spacey look in his eye and copious drool falling from his mouth, my brain Immediately began to race. Calculating how many minutes we were from the hospital, weighing whether to call 911 right away or wait to see if the rescue meds would bring him out and wondering how I was going to get my toddler, oblivious to the emergent situation upon us, back to the car quickly enough while pushing Oliver’s stroller in a way that I could make sure he wasn’t choking on his secretions?
I called to the group walking in front of us for help and then had the sickening realization that there was a global pandemic happening and it was unlikely that anyone was going to be comfortable touching either one of my children. But you know what? As tough as this journey gets sometimes, we seem to have guardian angels surrounding us. It just so happened that a pediatric nurse from Seattle Children’s Hospital was in the group of people walking just ahead of us. She looked straight into my eyes and seemed to understand my desperation in the moment. She grabbed Oliver’s stroller and I picked up Nicco and together we headed quickly for the parking lot. She talked to me the whole way up, which was wildly helpful to focus my panic-stricken mind. As we reached the parking lot, his seizure progressed, and it became obvious that it was going to be a bad one. I laid the superhero cape that my friend had hand sewn for Nicco onto the pavement, laid Oliver on his said and tried to steady my shaking hands to peel open the package of Midazolam, a rescue medication that has never fully brought him out of his seizures, but I prayed might work this time.
I fumbled my phone out of the bag, dialed 911 and swallowed the lump in my throat hard so that I could give the dispatcher our information without falling apart. In my periphery I could see people quietly gathering to steal glances at the spectacle before them. Yes, this is our life, I thought to myself. It’s unusual. I understand. I’d look too.
The sweet nurse kept Nicco occupied and out of traffic until the dispatcher and I agreed on a plan. I decided to drive toward the ambulance because I knew that there was a possibility that the rescue medication could compromise Oliver’s breathing and I have never felt fully confident in my ability to save him if things went badly.
So, I laid him on his side in the passenger seat, propped up by a weighted blanket we’d been given by another mom in LA and raced toward the ambulance, maxing out my mini van’s capabilities on every curve.
We met the ambulance at a gas station, transferred Oliver into it and headed for the medical center. As I followed behind the ambulance, the numbness came over me. It’s the strangest experience and it happens during every one of these episodes. All of the emotion goes away. I feel oddly calm, have no tears to cry and become far more centered than I ever am in regular non-emergent life.
By the time we arrived at the ER, his seizure was completely over, and he was starting to come back to conscious awareness. I felt hopeful that we’d be going home soon.
Over the next hour or two, they monitored his vitals, took chest x-rays and attempted to get an IV-line in. Oliver has always had terrible veins that are difficult to find and collapse immediately once a needle is in. Putting in the IV line is one of the most awful parts of every hospitalization for him. And as his mother, I feel every ounce of that pain with him.
I hovered over the hospital bed with my phone playing Loo Loo Kids – his favorite YouTube show. The muscles in my back were completely seized up from the stress of the day but I steadied myself as best I could to keep his attention away from the repeated jabs to his arms.
Then all of a sudden he got very still and stopped crying. In my mind, I actually imagined that he’d gotten so stressed from all the needles that he just dissociated from his own body and had gone numb too. But nope. Another seizure began. Those same tell-tale twitches of his mouth, then his eyes, the excessive drool, then the fixed gaze. I ran around the bed to turn him onto his side to prevent more aspiration.
They gave him another partial dose of Ativan, and then another and then one more. They loaded him with Keppra, and we waited. His eyes balls never stopped shaking and the discussion about intubation and transport to Seattle was broached.
Tears instantly filled my eyes and I swallowed hard to keep my voice from cracking. This is how PTSD works. You’re going along, thinking you’re completely fine, handling things well, and then BAM, a trigger hits and all of that past buried trauma re-emerges.
It is one thing to tell yourself you’re OK on an intellectual level. But, the body is immune to the intellect. Our cells remember trauma. The olfactory receptors remember the way that our child’s hair smells when they have laid on a hospital bed for a couple days. Our ears recognize the wailing of sirens as a sound intertwined with our child’s life-threatening condition. Our body already knows the sleep deprivation that will come on that cold hard parent’s couch in our child’s hospital room, awakening to the vitals checks and alarms throughout the night . We can pretend to escape trauma. We can bury it or run from it or ignore it but over time it can no longer be contained. And that is what I am experiencing in life now… A point at which it can no longer be contained.
When the ER doctor told me that night that Oliver would need to be intubated and life-flighted by helicopter to Seattle, the façade of strength I had been hiding behind began to crumble. The vision of Oliver lying blue-tinged in the puddle of vomit when I found him in bed last November, covered in sweat and seizing, instantly flashed in my mind. That was the last time he was intubated. Knowing that intubation means a fast ticket to an ICU bed, our hospital stay from Christmas time last winter suddenly came to mind. The way Oliver’s lungs were filled with fluid in just 36 hours. I could see his chest x-ray before me as I tried to blink away my tears. And then the scene from the ER trip in which a doctor ran to his bedside, thrust his head sideways and put a needle straight into his Jugular vein after his stats began to drop and they couldn’t get a line. A part of me left my body that day, hovering somewhere up and behind my own head, I had watched my life unfold.
This last memory reminded me to stay here this time. Be present. Focus and shake off the trauma so that I could make clear decisions for Oliver’s care.
I have often wonder, after these events, if the doctors realize the complex trauma that is flowing beneath the surface of a parent’s calm demeanor as they face repeated medical emergencies and decisions. Because, I mean they really wouldn’t know all of this. We, the parents of medically fragile warriors just keep going. There isn’t any room for another option. The traumas will keep coming. We know they will. And we just have to get through them. Over time, our speech even becomes normalized as we learn to dispassionately recite our child’s traumatic birth history without a single tear or calmly talk about the DNR we had written and the end of life preferences for our child. These things are often horrific and unbelievable to others, but to us, it is what we know. It is our story. And we’ve had to have these conversations so many times that we develop a protective shell, a coat of armor, so that we don’t have to re-traumatize ourselves every time. But the shell that is seen is just that – a protective container for a human heart that has known great loss and unbelievable suffering. Year after year we watch our child get poked with needles and have collapsed veins and get intubated and have surgery and struggle every single day. So, we develop protective strategies to deal with it.
They wheeled Oliver into the intubation room and asked me to wait outside so that “If something went wrong, they could do their jobs.” I can’t tell you how unnatural it is for Mother to leave the room when her child is about to be intubated, even though logically she understands that it’s the safest option.
I went over to his bed, gave him a kiss and told him I’d see him soon. As I left the room the nurse said, “Aweee he wants you. His eyes are following you.” The door closed and I pressed myself against the wall and collapsed in tears. The culmination of past trauma, the fear, the feeling that I had just abandoned my child, and the questions about whether or not I should let the doctors do this, overtook my mind and heart and I was overcome with emotion.
Each time one of these events happens, I question how humans can withstand such high levels of sustained stress and trauma. But there is no time in the moment, to process any of it. You just have to survive it. Sometimes the survival looks like a constant stream of tears and sometimes it looks like complete numbness. I find that, for me, it goes in waves but fo most of our hospitalizations, I am simply numb and only stable once the initial trauma is over.
That night, I felt ashamed by the onslaught of tears but also powerless to stifle the sadness and exhaustion behind them. A kind nurse with ice blue eyes came up and saved me from my repair. She asked all of the right questions, said all of the perfect things and eventually helped me bak to a place of relative composure. She was one of those angels nurses who exude compassion from every cell of her being and who, quite obviously, had found her perfect calling in life. She stayed with me until they let me back in the room and I don’t think she will ever know how thankful I was for her companionship during those excruciating minutes of waiting.
As I walked back over to Oliver’s bed, I saw his heart rate rising on the monitor. His brow was furrowing in pain and the most awful sound I have ever heard was coming from his throat as he swallowed repeatedly on he intubation tube, attempting to cry but unable to make any sound. I absolutely panicked. “Why is he waking up?! Why is he waking up?! He’s in pain! Somebody please sedate him!! Why is he waking up!? He’s supposed to be sedated!!”
The 10 minutes we anxiously awaited the arrival of more Fentanyl, felt to me, like 10 hours. There aren’t powerful enough words in language to describe the helplessness I felt watching my child struggle against an intubation tube, his body writhing off the bed, covered in sweat, his heart rate setting off the tachycardia alarms. It took every ounce of self-control in my mind to not scream at the nurses who were only trying to reassure me, yank the stupid tube out of his throat and just wrap him in my arms and run away from this life.
It is really really hard, in those moments, to maintain composure. After he was finally sedated, his heart rate calm and his eyes closed, embarrassment flooded my mind again. I began apologizing for my panic, chastising myself for not remaining steady and reminding myself that this is exactly why they don’t let parents stay in the room for these procedures. Simultaneously, and in conflict with all these feelings, arose my mama tiger, reassuring me that I must stay be my child’s side to protect him from things that are overlooked. To pay closer attention than anyone else in the world will, because he is my flesh and blood and I know him best.
It is I who must be there to correct the mistakes during each transfer of care. It is I who must make careful decisions that take into consideration his quality of life above all else. It is I who must decide whose medical advice I’ll trust and who I will not. I have to be there for him fully in these moments to speak for him and to protect him. I tried to reassure myself that I reacted as most mother’s would have, given the situation, and to not turn this into yet another opportunity to belittle myself for not being ‘better.’
As the flight crew arrived, I regained composure and the calm numbness returned again. I smiled at the uniforms the crew wore. They looked just like the real-life super-heroes that they were… Their jump suits and brightly colored backpacks more like costumes than flight outfits. They arrived with more monitors and oxygen tanks and gear than I have seen since our days in the NICCU. I listened quietly as they adjusted all the vent settings, checking and rechecking saturations and outputs, using technical terms far beyond my level of comprehension. They were fascinating to watch.
Following the flight crew out of the ER to the helipad behind the building, I marveled at the magnitude of intervention required for this one tiny little boy. All of that equipment piled on top of a huge stretcher with my sweet little baby almost invisible among the blankets.
Some people probably wonder why I take pictures and record our traumatic events like this. It’s because they are all an incredible part of our journey. Most families go to the Grand Canyon or Disneyland. We go on medical helicopter rides to far off places, unexpectedly, in the middle of the night. This is our version of life. And it’s also valid and memorable. So, I take pictures. It’s another way of pulling in something I love, photography, to mix with the tragedy and alchemize the experience into something stunning, a moment of colliding emotions, captured on film.
That night, as we flew 5000 ft.³ above Seattle, Beyond the wildfire smoke and in the blackness of night, I was enthralled with the beauty before me. All I could think was, ‘Man Oliver, life with you is fascinating.’ It is painful and terrifying and heart wrenching and stunning and exciting and evolving. Like the spiral, the symbol of your Odyssey, it is always folding back in on itself, feeding this existence that so easily could have not been.