4:30 am.
Tonic clonic seizure.
I sleep.
Jonathan lets me.
Tobin wakes.
For all the ways he drives me bonkers, crumbs everywhere, bathroom messes, stinky shoes, for all the ways, he is always the first to wake and be there to help through the seizures.
The boy whose fear used to make him run during thunderstorms now stays, calm and present through his brother's, no matter the hour.
A minute and a half.
An eternity.
The seizure releases.
Trevor's body is ravaged.
Along with the hearts of his brother and father.
He's exhausted.
His sleep is restless.
A curse of seizures, being so very tired yet unable to find peace in rest.
I wake.
My first stop is coffee.
My second the couch and laptop.
Though I peeked at them on my way by, I am yet ignorant.
Jonathan finds me.
His sigh tells me everything.
Sadness etched on his face.
He gives me details.
Seizure Tracker is updated.
Trevor finally wakes.
He climbs in my lap.
Wraps his arms around my neck.
Delicious.
I hug him like it might be our last.
Because it always might be our last.
He's so tired.
Scrambled thoughts.
The idea of school laying before him is distressing.
He can't remember.
What do we do first?
What do we do last?
He doesn't know why he doesn't know.
He says he should know, but he doesn't.
You had a big seizure, Love.
I tell him we can do nothing but rest today.
This doesn't sit well.
He must live by his schedule.
Or at least the idea of it.
Knowing what comes next brings him peace.
Security.
So, I reassure him.
We'll take it slow today, Love.
Help me make your schedule.
Bible first.
Always.
He wants to start now.
It's only 7 am, but I agree.
He runs to grab his book.
We do his lesson together.
Isaiah 41:10.
When it's over, he's restless again.
Unsettled.
So tired.
I encourage him to lay down and rest.
His body still won't let him.
Pacing.
Fretting.
Tired.
Always so tired.
Eventually, he does snuggle down with his iPad.
It's 7:40.
He's been there for nearly an hour.
If his body and mind allow, he might spend the day in bed.
This is epilepsy.
We are so grateful for the decrease in seizures Nemechek Protocol has given us.
But grateful isn't optimism.
We cannot be optimists.
We know too much about this disease.
He is palliative.
We know too much about this world.
It is broken.
Too much about the next.
Healing is waiting.
So we remain grateful.
Always our eyes are drawn to the horizon where everlasting hope and full healing gleams in the distance.
Tonic clonic seizure.
I sleep.
Jonathan lets me.
Tobin wakes.
For all the ways he drives me bonkers, crumbs everywhere, bathroom messes, stinky shoes, for all the ways, he is always the first to wake and be there to help through the seizures.
The boy whose fear used to make him run during thunderstorms now stays, calm and present through his brother's, no matter the hour.
A minute and a half.
An eternity.
The seizure releases.
Trevor's body is ravaged.
Along with the hearts of his brother and father.
He's exhausted.
His sleep is restless.
A curse of seizures, being so very tired yet unable to find peace in rest.
I wake.
My first stop is coffee.
My second the couch and laptop.
Though I peeked at them on my way by, I am yet ignorant.
Jonathan finds me.
His sigh tells me everything.
Sadness etched on his face.
He gives me details.
Seizure Tracker is updated.
Trevor finally wakes.
He climbs in my lap.
Wraps his arms around my neck.
Delicious.
I hug him like it might be our last.
Because it always might be our last.
He's so tired.
Scrambled thoughts.
The idea of school laying before him is distressing.
He can't remember.
What do we do first?
What do we do last?
He doesn't know why he doesn't know.
He says he should know, but he doesn't.
You had a big seizure, Love.
I tell him we can do nothing but rest today.
This doesn't sit well.
He must live by his schedule.
Or at least the idea of it.
Knowing what comes next brings him peace.
Security.
So, I reassure him.
We'll take it slow today, Love.
Help me make your schedule.
Bible first.
Always.
He wants to start now.
It's only 7 am, but I agree.
He runs to grab his book.
We do his lesson together.
Isaiah 41:10.
When it's over, he's restless again.
Unsettled.
So tired.
I encourage him to lay down and rest.
His body still won't let him.
Pacing.
Fretting.
Tired.
Always so tired.
Eventually, he does snuggle down with his iPad.
It's 7:40.
He's been there for nearly an hour.
If his body and mind allow, he might spend the day in bed.
This is epilepsy.
We are so grateful for the decrease in seizures Nemechek Protocol has given us.
But grateful isn't optimism.
We cannot be optimists.
We know too much about this disease.
He is palliative.
We know too much about this world.
It is broken.
Too much about the next.
Healing is waiting.
So we remain grateful.
Always our eyes are drawn to the horizon where everlasting hope and full healing gleams in the distance.
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JoyH