Before I kneel to pray, I survey the situation and plot an exit strategy--a plan for exiting the church sanctuary as quickly and as quietly as possible so as to attract as little attention as possible.
It's not an idle exercise. Awesome's been having seizures on a predictable schedule lately and today or tomorrow, she's due to have another one. Morning is prime seizure time. And there have been undeniable signs that a seizure is on the horizon, including the fact that the left side of her head has been hurting.
As the first hymn begins, my husband David and I lean in towards each other. Speaking quietly, we confirm the agreed upon exit strategy; we understand more than we say. If a seizure starts--I'll grab Awesome from behind around the middle with the entire length of my arms and press her up against me--to keep her upright at first and then to facilitate carrying her when she becomes incapable of walking. When she can't walk--David will also grab her feet and we'll carry our 13 year old daughter out of the church as quickly and quietly as possible. Wordlessly I point to indicate our exit path; wordlessly he nods his agreement. This being Easter Sunday--when even the vestibule is crowded with people and extra chairs--once we reach the vestibule, we'll duck into a side hallway. It's important we find a place to minimize the disruption we'd cause. A place where we can shelter with more privacy until the seizure is over. We have no desire to enliven anyone's Easter morning with a public spectacle. Or to draw any attention to what is happening.
To facilitate a quick, seamless exit, I've learned to keep our belongings well organized. I wear my purse--with a long shoulder strap over my head and across my chest--so I'll not have to worry about grabbing or dropping it in the urgency of the moment. In the same way, not unique to being in church, but something I must do, every day during every waking hour to keep it close at hand, I also wear the bag with Awesome's seizure rescue medications. And in another nod to preparedness, though I don't really need it on a warm morning, I've worn a button-up cardigan that can be easily removed and used for seizure first aid. Folded over, and placed under Awesome's head, the sweater's cushy bulk will protect her head from injury (banging against the ground repeatedly) during a convulsive seizure. And if the seizure were to go on longer than it should, alternatively, the sweater could be draped over Awesome to provide privacy as I administer her rectal emergency seizure rescue drug Diastat.
It all sounds daunting. And indeed it is. Being in a large crowd in a public place presents certain challenges for those with intractable epilepsy. We must be ready to act in an instant, with a plan prepared ahead of time, with all the things we'll need in place, and with as few loose ends left dangling as possible---in case a seizure should strike without warning. If we aren't prepared, things can quickly become complicated and out of control. And we end up distracted, dealing with the reactions of those around us instead of concentrating on the care of our daughter. It can quickly become a circus, a memorable public spectacle. And that is unpleasant, unfortunate, and totally needless. We want to handle our daughter's seizures discretely--just quietly without all the drama. And with minimal interruption to those around us.
We're used to the hyper-vigilance that life with intractable epilepsy demands. Monitoring Awesome is the rhythm, the solid bass beat against which the melodies of our lives play.
Near the end of the Confession of Faith, Awesome leans over and whispers in my ear that she's having a strong aura--a simple partial seizure--that can signal that a bigger, more widespread, more serious seizure might be about to happen. Sometimes auras go on to become big seizures; sometimes they don't. But we don't take chances, especially when in public places. And so, as the music for the offertory starts, though it's odd for the setting, Awesome asks me to help diffuse her seizure by asking her questions. I know the drill. Keeping Awesome's brain occupied with something she likes to think about can help forestall a big seizure. Therefore, as the offertory plate is passed through the congregation and the choir and those around us sing, I ask Awesome to name the characters from her favorite book series and tell me about their personalities. She does so, whispering her answers in my ear. A minute or two later, when our eyes meet--the fear is gone. She confirms that the aura is gone. Crisis averted--for now at least.
As we stand for the offertory prayer, I put my arm around Awesome's shoulders and pull her closer. She leans her head on my shoulder; it fits into the hollow of my neck. We are happy, thankful, and content for the moment.
We--mother and daughter and father--face the moment to moment challenges of epilepsy together. We are a team. All through the service, as the other worshipers around us sing hymns and are lost in meditation, contemplation, prayer, and worship, we stand side by side ever actively watchful, and ever actively diffusing seizure threats as they come to us.
Emotionally, we ebb and flow. One minute Awesome is irritated at me because she is tired of me watching her; she's tired of being constantly monitored. She just wants to be a normal kid. She's sick of all this.
But the very next moment, Awesome's clinging to me. Especially this morning, whether standing, sitting, or kneeling, she is needing reassurance that everything will be OK. She is constantly leaning on me, nudging me to put my arm around her, putting her arm around my waist, snuggling in, lying across my lap as if she were a young child and reaching up to gather my arms around her. And because I know she needs my reassurance even when she stops reaching out to pull me towards her, I reach out to touch her reassuringly; I put my hand on her shoulder when she sits down or kneels. I put my arm along the back of the pew behind her head and rest my hand on the shoulder opposite me.
Because I'm a curious person, sometimes I wonder what people think when watching us during the church service. The way she seeks out my reassurance. The way we lean in to each other. But frankly, I don't really care if we seem odd to others. I don't really care if they don't understand what's going on with us; what our script is and why. Because it's not important. I do what I need to do to help Awesome feel supported, loved, comforted, and safe; and it's especially important and especially intense on mornings like this one when she's feeling vulnerable to an impending seizure.
Sometimes I also sit and wonder what life would be like to simply be able to concentrate on a church service and not feel that we had to be at the ready, prepared to swiftly and suddenly move our abruptly unconscious 113 pound daughter out of the church without any warning, without creating a scene. We are ipso-facto Awesome's first-responders; we must always be prepared because with seizures you often don't get a warning. One minute everything is fine. And the next, everything is not fine. The potential to create a spectacle--and disrupt others' activities in the process is always there. And so too the potential to end up in a serious medical emergency. Through our lack of preparedness. Or a delayed response. Or mismanagement. It's a huge responsibility from moment to moment.
I am guard, strength-giver, emergency medical care provider, sought-after comforter. And--with all that it implies at the most primal level--I am also Mommy. The person who can somehow make it all better even when I can't.
Awesome is the suffering child, the vulnerable child. The monitored child. The treasured daughter And yet too, the strong warrior. Growing stronger with every battle that she fights in this awful war.
The drama that plays out in the pew where we sit is ours alone. It's private. It's hidden. Shared only among us. Known only by family members. A silent, but intense battle. And the battle's constant. To sit here engaged in combat from moment to moment, is labor. A hard labor. Laborsome. But it's also a grace.
Every moment we are completely aware of our vulnerability. And as the moments pass without incident, we are more and more aware of God's grace and mercy. Every moment that passes without incident is an occasion for deep thankfulness.
And out of our unusual lack of control and our vulnerability from moment to moment does come grace. Deep grace. Grace that is like life itself--and like Easter too--at once both exquisitely painful and full of suffering, but also exquisitely gorgeously shining and beautiful.
So bittersweetly beautiful is the grace that we feel from moment to moment that sometimes it seems like it somehow contains the secrets of the deepest truths of the universe.
The truth of the love of God Himself.
We make it through the Easter service without a seizure. I feel renewed. And like I have glimpsed a little bit of eternity this Easter morning.
Come Healing
by Leonard Cohen
O gather up the brokenness
And bring it to me now
The fragrance of those promises
You never dared to vow
The splinters that you carry
The cross you left behind
Come healing of the body
Come healing of the mind
And let the heavens hear it
The penitential hymn
Come healing of the spirit
Come healing of the limb
Behold the gates of mercy
In arbitrary space
And none of us deserving
The cruelty or the grace
O solitude of longing
Where love has been confined
Come healing of the body
Come healing of the mind
O see the darkness yielding
That tore the light apart
Come healing of the reason
Come healing of the heart
O troubled dust concealing
An undivided love
The heart beneath is teaching
To the broken heart above
Let the heavens falter
Let the earth proclaim
Come healing of the altar
Come healing of the name
O longing of the branches
To lift the little bud
O longing of the arteries
To purify the blood
And let the heavens hear it
The penitential hymn
Come healing of the spirit
Come healing of the limb
O let the heavens hear it
The penitential hymn
Come healing of the spirit
Come healing of the limb
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