Before She Leaves

I am trying REALLY hard to finish this book about my daughter’s

twenty-four year journey with epilepsy before she leaves

to go off to college.

I am SOOOOOO proud of her.

I must finish this book before she leaves,

because I fear that reliving her story while she is away from home will make me afraid.

We have been tethered together for these twenty-four years.

Her being gone will be a HUGE adjustment for Seizure Mama.

I need some encouragement.

Especially on days when I don’t want to send myself “back there” emotionally.

I know there is a mama out there

who needs my story to help her get through her own journey.

I am trying to finish for both of us.

Hang in there Mama!

I’m coming.

SEIZURE MAMA

Can I Stop Now?

Can I stop being afraid?

Can I stop trying to fix the unfixable?

Can I forgive myself for not knowing how to make this better?

Can I quit wondering if I brought on this curse?

Can I give up and quit trying to breathe?

This stupid struggle is too hard and too long.

PLEASE!!!!!! Can I stop now?

Crash and Run

It happened again. This time in Food Lion.

I was standing at the checkout, when a loud crash startled everyone.

I held myself in place.  Fighting the instinct to run

toward the sound.

It was NOT Rose falling.  She was standing beside me.

This was NOT an emergency.

No 911 call for the dropped watermelons.

No blood on the floor, only red juice.

No need to run toward this crash.

She is safe by your side.

Stand still. Breathe.

SEIZURE MAMA

Water and a Timer

Medication transitions in children with epilepsy are a tricky business.

Some drugs have to be backed off slowly.  The new drug must be added slowly.

During this change parents must watch for seizures from removing the old drug while also monitoring for side-effects from the new drug.

Also if the new drug is the wrong drug, there may be a reaction.

We went through these transitions over and over again with Rose.

Some were uneventful, but a few were very scary.

Once when she was transitioning rapidly due to seizures and side-effects, she went toxic.

My calls to her doctor were frantic. I remember I could barely get out the words.

I told the nurse that Rose was listless and I felt like we were poisoning her.

The wise nurse told me to stop the new drug and get a timer.

She said to keep setting the timer for 20 minutes. Every time it went off, wake her up and make her drink water. We did this for hours until she finally improved.

Maybe it made no real difference, but Mama had an assignment that she thought would help her baby.  Not knowing what to do to help your sick child is torture.

At least I had my job to do while we waited for the wrong drug to leave her system.

SEIZURE MAMA

This is for YOU

My life has been funneled to this task.

It is almost like I am not allowed to start anything else.

I feel like Jonah running from God.

Jonah did not want to go to Nineveh. I do not want to write this book.

I have PTSD, for goodness sake.   Must I relive this trauma?

Yes.  Because you are out there.  Feeling like the sky is falling.

Afraid.   Alone.

And I understand your pain.  I know your fear. I know your loneliness.

If I turn my back on my past and try to forget this experience,

I am turning my back on you.

I cannot do that. Whoever you are.

I am here.

God bless us both.

Seizure Mama

 

Never a Good Time for a Seizure

No time is a good time for a seizure, but there are times that are unbelievably bad.

When those horrifically timed ones do occur there is a wave of disbelief.

Really? Now? Could we not make it through this one event without a seizure?

Let me share.

Rose had a seizure in line at a funeral home. We had to quietly sit her in a chair and hold her up until it was over, then find a wheelchair and whisk her away.

Then there was the time she was playing with the band at a football game. Her seizure cleared the stands and stopped the music.

How about a seizure under the goal during a high school basketball game?

Seizure followed by bike wreck in campground in South Dakota aka Middle of Nowhere.

Seizure on the sand at the beach.

In a pool.

While planting a plant, then a face plant; eyes open, resulting in a scratched cornea.

Flipping off of a bench into gravel.

During a Brownie awards ceremony.

Under a picnic table on concrete.

Enough!  Everywhere.

You start to feel punished for doing anything.  You start to feel damned.

But you go on.  This is the bad hand you have been dealt.

Play the hell out of it.

Seizure Mama

 

 

Should We Go?

Seizures steal so much, that we hate to give them anything out of fear.

We do not stay in the house waiting for the next seizure.

We do not want the fear to win like a terrorist.

But we have to ask ourselves, “Should we go?”, before certain outings.

Swimming?    Stay within inches of her.  She must wear her snug life-jacket.

Parties?     Let her sit in a sturdy chair with armrests.  Stay cool and hydrated.

Outside?    Stay in the grass.  Take breaks when red in the face.

Restaurant?   Booth please.  No Red 40 in food.  No alcohol…

Camping?  Route to nearest hospital mapped out. Pack emergency medications and first aid kit.

We go where we want,  but there are plans and modifications to be made.

We always have the “Seizure Bag” with supplies, towels, small blankets, extra clothes, wipes and bandages.

DO NOT JUST STAY HOME.

Do not let a three minute seizure have the other twenty three hours and fifty seven minutes of the day, out of fear.

None of you will get any day back.  Push the limits.   Others will try to limit you.

Rose had seizures in pools, at parties, in a tent camping, riding a bike, on the beach, eating in restaurants, shopping in stores, at Brownies, at Bible School,  even in a funeral home line and in the parking lot after her college graduation.

Handle it calmly and quietly for those three minutes. Then pause to recover and continue. EMS if needed.  They do not have to transport.

Afterward we all have a rest in a quiet place or in the car.  Then return to the activity if possible.

Do not stop your life and wait.  This is the only life you have.

Do not let the seizures seize it.  Live it bravely.  Live it big.  Get out there.

Should we go…?

YES!

Seizure Mama