Almost an hour after I had fallen asleep my eldest daughter woke my wife and I from our vacation property rental bed.
“Mabel keeps gagging and isn’t responsive”
My faculties are subdued if not compromised by 100 mg of Seroquel, a mood disorder drug I’ve been taking for almost two years. My groggy calculations based on a previous episode of Mabel’s sleep walking, was that she was in a nocturnal trance. But the gagging?
My wife crawled into Mabel’s bunk and sounded the alarm immediately barking out an order to call 9-1-1. Those three numbers … have they ever been called on behalf of someone I loved so severely? I don’t think so.
What I remember next is running up and down the stairs to get my phone to call 9-1-1? No, my 17 year old executed that task. To get my wife’s purse because she knew we’d be hopping in an ambulance? I don’t remember what my movement was in service to, only that I collapsed. Here in the most desperate moment of my life, I collapsed. I could feel the blood leaving my head. The nausea. Blurred vision. My legs gave out. The fear was severe.
“She’s having a seizure.”
I couldn’t get up there to help. But I could hear. I could hear her rattled breathing.
She’s breathing!
Is she dying? Can I not crawl to my daughter in the final moments of her life?
My body. You’ve betrayed me.
The seizure ended. The ambulance came. I finally made it to the toilet to gag. How long did all of that take? I couldn’t possibly tell you.
The paramedic asks if she’s suffered from incontinence. She hasn’t. He names what we know. She’s had a seizure. Somehow, Mabel now “conscious” has been escorted out of her bed, and down the steep stairs leading from the deck to the sandy beach below. At first, our EMT Donnie, a spry white haired but nonetheless elderly man, and my 77-year-old mother are the escorts. This feels absurd. I insist on taking my mother’s place even though everyone views me as a compromised and questionable option. I’m determined to help my daughter in some way even if I can’t.
When we get to the ambulance the EMT Donnie lets us know we aren’t obligated to take the ride to the ER. I now see this as a good natured comment made in concern for our financial liability, but am also put off in that I sense he’s not taking the magnitude of what’s just happened as seriously as I am.
She just had a seizure. She could seize again … on the way to the hospital. Hasn’t he considered this? Lindsay firmly accepts, nay demands, the ambulance ride.
Once we’re strapped in and moving, Donnie announces to his EMT partner that this is a level 1 non-emergency. No lights go on. No sirens turn on. The drive is casual, both in pace and in the whimsical conversation offered by Donnie and his nameless partner who sits across from me in the driver’s seat. He asks about our vacation. About me. My job. All good questions, I’d normally be eager to answer, but my body is still recovering. My lips feel numb in the same way they do after a novocaine shot or after extended exposure to the whistling winds of a Wisconsin winter. I can feel the muscles in my mouth struggling to fully form so that I can articulate properly. My answers are labored.
I can hear Lindsay laughing in the back answering Donnie’s questions. Is she in shock or does she know something I don’t. What’s to laugh at?
Eventually I hear Mabel’s quavering voice: “Will I have to get a shot?” My heart breaks, both because I can hear fear in her voice, but also because the innocent question is the clearest sign of her oblivious understanding of what has just happened. The question deepens my sense of her victimhood. She has been stolen from by her own neurochemistry. I would later learn this is the moment she fully entered the present with her cognitive faculties despite being awake for 20 minutes and complying with commands.
At the hospital I’m now calm. The pros are here to save us. Save my daughter. Save my emotional self. I have help.
After Mabel’s positioned in her hospital bed, the arms are covered with padded mats that resemble the mats that covered the floor of gymnasiums during elementary gym classes. These mats are the first sign of our new reality. Cushions to absorb chaotic and involuntary movements from her body. It’s not long after we’re in the ER that my body gives up. I crumple to the hard tiled floor where I’ll lay while Mabel gives blood and urine samples and undergoes a CT scan. I’m in and out of sleep, but must be most certainly in because the 4 hours scoot by without my attention.
Our ER doctor who, I would guess, was eastern European based on the surname, and who Lindsay would later tell me had a striking auditory resemblance to Gru the protagonist from the Despicable Me films reports at 5:30 A.M. that “Mabel is a healthy girl. Her CT scan was clear. This may never happen again, but if it does we will see a pediatric neurologist who will do an MRI. If she keeps having seizures they can give her medicine to help with that.”
Again I’m struck by the casual approach to my daughter’s catastrophic moment. I guess I’m grateful for this though not necessarily reassured.
Lindsay experiences a flood of relief. Since the moment when the CT scan was announced until she got the results her somatic response has held her in nausea. In my compromised state of cognition I weave in and out of the thoughts of brain tumors, but without alarm, thinking mostly about shaved heads and scars, neither a rational nor constructive thought.
A grace. Mabel sleeps most of those five hours in the hospital. Cortisol is making its way through Lindsay’s body and mine.
We go back to our vacation rental to sleep for an hour or two.
I wake up in a new world that I’m just becoming acquainted with. In 2011 I read Aleksander Hemon’s courageous and vulnerable New Yorker essay “The Aquarium” about the process of discovering his 10-month-old daughter Isabel’s brain tumor and subsequent death. Every word of that essay is sacred, but one perhaps less salient, and yet nonetheless profound detail Hemon includes in that essay is his brief relationship with a box of cannoli that he picks up from his favorite pasta shop with his other daughter Ella. The cannoli never makes it home. Instead, it is intercepted and rerouted to the hospital by an emergency surgery for Isabel. Upon arrival Hemon puts the box of cannoli in the fridge in Isabel’s room before heading to pre-op. He writes, “Only later would I understand that that absurd act was related to a desperate form of hope: the cannoli might be necessary for our future survival.”
T.S. Elliot introduced the concept of the objective correlative into the vernacular of poetry. It occurs when an object bears emotional weight. This is the function of Hemon’s inclusion of cannoli in his piece.
I say all that because after trauma, the human experience is about a set of choices we make as we re-engage the string of mundane realities that sequence our days. I was confronted with this immediately when I woke up.
Do I go on my morning walk?
Do I eat breakfast?
Do I start packing?
Every act of normalcy seemed like a flagrant miscalculation that refused to acknowledge the magnitude of what had just happened.
But we must walk, pack, and eat. How?
Mabel’s prognosis is in some sense unknown, but it is also not terminal nor even immediately threatening our way of life. As her doctor observed, it may never happen again.
This kind of comparative second-guessing has plagued both my thought process and prayer life since this all happened.
In the most desperate moment of that night, when I was crumpled on the floor listening to Mabel’s irregular breathing as she was seizing I invoked a desperate prayer strategy offered by St. Paul from Romans 8, namely, that the Spirit intercedes with groanings on our behalf when we don’t know what to pray.
I asked for those groans at first out of fear and then later out of numbness. I did not know how to pray and later what to pray.
Odd as it may seem part of the calculating that has more regularly plagued my petitions in this stage of my faith development, has been an almost immediate set of tacit petitions for the children of Ukraine and Israel and Gaza and for every parent who I know has, for whatever reason, recently felt the desperation that their child’s life might be being taken from them. I’m not sure what to make of these immediate and tacit prayer requests because I think they testify to two realities unfurling themselves in the my soul
- My child’s life can’t be more important than these other lives that also need Your help
- I can’t understand why You aren’t helping them and if You aren’t willing to help them I’m afraid You won’t help my child.
*****
It has been almost a week since Mabel seized. Initially my relationship with her reverted to that of a parent and a newborn. An incessant need to check on her to assure myself of her basic vitality. An overcautious set of prescriptions for her safety. And already I’ve resigned myself to let her live her life free from my anxiety even if I’m struggling to figure out how.
We; Mabel, Lindsay, and I, saw her primary care physician on Monday who referred us to a pediatric neurologist. I’m guessing this will involve a MRI and inconclusive results, but who knows. Due diligence I guess.
I had a meaningful conversation with Lilli when I took her to theatre practice on Saturday afternoon. “How are you doing?” she asked. This kind of check in from child to parent is normally off limits. Parents work hard to preserve the capacious nature of their children’s sense of emotional freedom, but because of her proximity to the traumatic moment, I conceded that that space has already collapsed for Lilli and that honest conversation in which I disclose my grief is best for both of us. In my confessing I discovered a truth, “I’m working on accepting that this has happened.” Mabel is one who has had and may continue to have seizures.
I’ve had no formal training with trauma and its effects on the body, but in a teaching moment my therapist told me about a time when she saw her motorcycle riding husband get run over by another vehicle. He was fine, but it didn’t matter. Before she knew he was fine she saw him die in her mind. Her trauma fixed her in that moment of death even as they continued to move through life together. While my circumstance is not the same, I have experienced the reality that trauma impacts our cognitive faculties. I think this is what I mean then when I say “I am learning to accept that Mabel is one who had and may continue to have seizures.”
I also saw my primary care physician on Monday with intent to investigate a connection between my mood disorder drug and my body’s failed response. It’s possible, my drug in particular can exacerbate a response that flushes blood from the head in moments of distress, but not likely. There’s also consideration given to my qt interval, which describes the time it takes for the ventricles of the heart to contract and relax, measured from the start of the QRS complex to the end of the T wave. My doctor floats the possibility of doing an EKG, but I politely decline. It’s more likely that I had a vasovagal response. This happens when the vagus nerve which controls heart rate and blood pressure is stimulated. In stress we either fight, flee, or freeze. It turns out I’m a freezer. A severe one in this instance. I’ve known about my predisposition to freezing my whole life. Sometimes it’s served me well allowing me to interject a non-anxious presence in moments where that was needed, but in this instance my vasovagal response rendered me useless in a moment when I most wanted to be of help to my daughter.
It doesn’t feel quite right to say I feel guilty about not being able to help Mabel, but I do feel grief, and yet I am comforted by this notion. My wife, who was the safest person in the world for Mabel, was there, and did exactly what needed to be done. But even this solace is tempered because I know that in addition to the rattled breathing I could hear that still haunts me, Lindsay bears the scars cut across her heart from watching Mabel’s face and body contort caused by forces outside of her cognitive direction.
In a small stroke of irony Mabel seems to be the most emotionally unscathed from the whole episode. Her recall gathers around bookends, remembering asking Roy to turn off the light in their room and then coming to in an ambulance. The only evidence of what happened to her was her bleeding tongue which was pierced by her clenched teeth during the seizure.
Mabel’s seizure occurred in the early hours of the morning we were slated to leave our beach house and head back home. As such, her first full night after the seizure occurred back in her shared bedroom with Lilli. Lilli, rattled like all of us, spent most of the night popping up from her lower bunk to check on her sister. Mabel finds this effort and every other form of instinctive care from the rest of the family to be unnecessary and a bit suffocating, and so protested her sister’s efforts. Lilli was candid in her response, “You didn’t witness what happened, we did.”
The proverbial box of cannoli is not confronting me with the same magnitude. With each day that passes, and I move further from last Wednesday I feel a bit safer. My capacity to treat my routine for what it is has returned. My body is learning to anticipate that Mabel will be just fine when I come around the corner of the living room and see her sprawled out on the couch with her iPad texting friends and playing Dress To Impress.
The morning of the seizure after we had returned to our rental house, but before we left I took my morning walk on the beach. This routine usually includes listening to an episode of Poetry Unbound, NYT Opinions, NYT The Headlines, and The Daily. I think I had made it through The Headlines before I abandoned listening. I decided instead to give my prayer life a chance in the absence of podcasts, and to listen, if God wouldn’t speak, to the waves lap on the shore. A few days before I arrived in Surfside I had reacquainted myself with a song our worship pastor had played on my last Sunday at UBC. The song, Look To The Hills, is based off the second Psalm of Ascent (121). In that wave lapping silence, like an obstinate earworm, the opening verse sang itself in my head,
I lift my eyes to the hills
To remind myself this isn’t all there is
I lift my eyes to the hills
And wait for help to appear
My help is from the Lord
After 45 minutes of listening I considered that Psalm 121 may have been God’s answer to my feeble prayers which seemed frozen in grief and numbness …
1 I lift up my eyes to the mountains—
where does my help come from?
2 My help comes from the Lord,
the Maker of heaven and earth.
3 He will not let your foot slip—
he who watches over you will not slumber;
4 indeed, he who watches over Israel
will neither slumber nor sleep.
5 The Lord watches over you—
the Lord is your shade at your right hand;
6 the sun will not harm you by day,
nor the moon by night.
7 The Lord will keep you from all harm—
he will watch over your life;
8 the Lord will watch over your coming and going
both now and forevermore.
So now I move forward into the future without a clear prognosis challenged with the existential grief that I think can only come from being reminded that, ultimately, we can’t keep our children safe. The best we can do is trust that they belong to God.
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