Sometimes in life, you encounter mud. Icky, sticky Mud.
To borrow a few lines from one of Oliver’s favorite books,
“Can’t go over it. Can’t go under it. Can’t go around it. Got to go through it!”
And indeed, we have been going through it.
In late May, Oliver caught his first virus since the pandemic started a year and a half ago. I knew this would eventually come as the world opened back up, but I wasn’t prepared for the hypervigilance it reignited in me. His last major virus sent us to the ICU with double pneumonia and try as I might, I couldn’t chase away those pesky memories when I noticed the telltale Oliver signs of a virus – lack of appetite, runny nose, and then the dreaded fever. I watched him like a hawk that day; hovering over him, taking his temperature a hundred times and waiting for the seizure. By evening, my nerves were shot from the stress of it all and so I took a break to go for a walk in the woods.
Not 15 minutes after I left, Conrad called me and said, “He’s seizing.”
I ran (something I definitely don’t do much anymore) back to the house and sure enough, his fever had spiked, his gaze was fixed to the side and his mouth was twitching.
I loaded up the rescue meds and gave him the first dose. It did nothing. Fifteen minutes later his limbs started twitching and it seemed that things were going from bad to worse. So, I loaded up the second dose, reviewed the CPR steps in my head, retrieved my phone for a potential 911 call and prepared to give him the meds. As I was raising the syringe to his nostril, Conrad stopped me and said, “Let’s just wait it out a little longer.”
Conrad’s gut feeling probably saved Oliver’s life that night because the next thing we knew, Oliver’s respiration tanked, and he began laboring to breath; the combination of that particular virus and his rescue medication dealing an unusually heavy blow to his lungs.
The English language does not possess words that would do justice to the experience of watching your child gasp for their breath. I suppose torture, helplessness and terror would be the terms most closely related. And once you hear that sound, it never leaves your brain.
There were 3 adults in the room at the time and we each held a different part of Oliver’s body up, suspended in the air, willing him to breath. The two men were silent, but not me. I was begging for him to breathe as hot tears fell from my eyes. For me, in these life-or-death moments, all my composure vanishes, and I plead with his soul, “Pleassseee don’t go. It’s not time yet.”
After what felt like forever, but in reality, was probably less than a minute, Oliver’s body regained control and he began to breath freely again. Convulsing from the adrenaline, he stared blankly into space. I looked down at the syringe of benzodiazepine in my hand, realizing the magnitude of what likely would’ve happened had I given him that second dose.
I didn’t sleep that night. I knelt by the side of his bed, listening to every breath, readjusting his body for optimal breathing, and going into full-on panic mode each time he choked on his secretions. When I tried to shut my eyes, I saw him gasping for air and heard that sound in my ears. I relived those 60 seconds a thousand times that night.
By the next day I was beyond exhausted, nowhere near OK and felt numb to my core. But we were in the final days of our move out to the yurt, had a million things to do to ready the house for rentals and there was definitely no time to slow down and try to process what had happened. So, I just shoved the emotions down and kept going.
Less than a week later he had another seizure while we were driving. As I held my convulsing child on his side, head on a diaper laid upon the asphalt of the highway, car after car pulled over to help. Before I knew it there were 10 people all standing around me, watching the spectacle.
Trying to manage the many complex emotions of an epileptic event while being observed by a group of people is a uniquely challenging feat. On the one hand, I am always abundantly thankful for so many kind and compassionate strangers, willing to help in any way they can. And on the other hand, I feel pressured to maintain a composure that feels unreasonable for a mother in her moment of crisis.
On the drive home that night my mind was consumed with anxiety and frazzled from this latest emergency. Backing into the garage, I nearly crashed the car by mistakenly hitting the gas instead of the brake… the final straw on the camel’s back. I dropped the kids in the house and ran into the woods yelling to the skies to take me away from this life.
That night I went into what can only be described as a complete and total fuck everything state of mind. I shut down emotionally and disconnected from everything.
I deleted the social media apps from my phone, shut down my laptop and shoved it away, refusing to think about Oliver’s health, the HIE life or anything growth/spiritual/healing related.
I turned my back on positive thinking, told the world to go fuck itself and cursed the idiot who came up with the phrase “Whatever doesn’t kill you makes you stronger.”
Yeah, or, whatever doesn’t kill you, totally fucks your brain, gives you PTSD and makes it nearly impossible to live an emotionally stable life of any kind!
Between the seizures, our move, inconsistent and insufficient respite help, and the task of deep cleaning our house to hotel cleanliness standards (something that if you know our family, you can imagine would be quite a task!), my body/mind/soul was consumed. Working myself ragged felt good. Existing on energy drinks and anger, I forced my body far beyond its limits and just didn’t stop. If I couldn’t control the chaos of my life, at least I could control the ultimate preventability of my house.
During a short check in with my therapist about three weeks in, I told her that I felt numb, like there was nothing meaningful in the world anymore. Like I had no energy nor desire for self-development or learning lessons or any of that shit. I was just angry and exhausted and done with this life.
She shared only a few words with me that day and they are what has carried me through each moment of the last couple months. She said, “You are in survival mode. Your brain is doing exactly what it should to protect you from having a nervous break-down. The numbness you feel is helping you survive this ridiculously intense period of your life. Allow yourself to be exactly where you are. Do not try to change it. Let every unnecessary task fall away. You don’t need to do anything except survive right now. Everything and everyone else can wait.”
As a person who routinely places an enormous amount of weight on my own shoulders, allowing myself to simply “Be as I am,” is not a concept with which I am comfortable. For as long as I can remember I have tried to be someone better than I am. I’ve tried to be smarter, quicker, smaller, less opinionated, more self-sufficient, a better steward of this planet. I’ve tried to improve my family’s eating habits and become a better housekeeper and obviously, the never-ending pipe dream of being a better mother. So, allowing myself to simply be as I was, especially in a state of absolute unraveling, was almost unfathomable. But I had nothing to lose. So, I tried it.
I let everything that was not absolutely necessary fall away and focused 100% of my energy on making our yurt livable and perfecting our house for the families who would call it home this summer. I did not try to change my mental state, my feeling of disconnection with the world or force myself to face the trauma from which I knew I was running.
On this journey of existence, particularly the HIE life or any other lived in close relationship with grief, sometimes a part of our heart has to shut down for a while so that it won’t shatter into pieces. Life gets so very intense that the only option with which we are left, is complete and utter surrender. During these times, all the frills of life fall away, and we are left fully and presently in the thick of it. Although uncomfortable and annoying, these survival stages are just a part of the journey and are worthy of being allowed and validated.
Honoring the more somber moments of our lives is just as important as honoring those moments when we soar through unscathed. There is wisdom to be gained from the struggle too and, for me, that wisdom has been to just let go and Be.
This spring wasn’t the time to make my kids give up their Ipads. It wasn’t the time that I was going to work through unprocessed trauma or become a more productive member of society. This wasn’t the time that I was going to write something epic or cook every meal from scratch or be better about returning text messages in a timely fashion. This was the time to simply survive, without the constant and unnecessary layers of added guilt and responsibility I perpetually place upon myself.
And I’ve gotta be honest, it has felt like I might never get back to a place where I am ready to re-engage with life. It’s taken quite a while to thaw out the frozen numbness of my heart and mind and feel again. But it is happening.
It’s also taken a while to get to a place of sharing this particular chapter with the world. It’s so much easier to write from my moments of personal strength… those times when I am clear and strong in the purpose and highest peaks of this journey. It’s harder to be open while traveling through the lowest valleys… when life is really hard and I’m fighting for the confidence I had once found and lost yet again. But covered in mud and exhausted from the trek, here I am, ready to reconnect.
To anyone who has also been slogging through the icky sticky mud lately, I pass this advice on to you. Allow yourself to be where you are without the need to change it or apologize. I promise, eventually you will emerge from the muck. I can’t guarantee what you’ll look like when you do, but you will, even if it doesn’t seem like it right now.
Maybe you’ll emerge a little more broken, maybe filled with a bit more wisdom, or maybe you’ll finally feel whole. I don’t know. For me, the jury’s still out on that stupid ass quote about what doesn’t kill you makes you stronger.
What I do know is that it’s easy to have a great day, snap a cute pic and slap an inspirational quote on it, sweeping under the rug the harder aspects of this life. But no amount of sunshine and rainbowing an Instagram feed erases the truth of this HIE thing. It’s hard. Many parts are messy and confusing and feel like failure. But it is in these weakest moments that we discover our rawest humility, our deepest truths, and hopefully, our most profound strength to continue on.
Thank you to those who’ve reached out to say hi and check on us over the last couple months. We love and appreciate you and have missed our community and connections.