Bad Advice From Good People

I have learned quite a bit as Seizure Mama.

One of my lessons that was learned hard and fast was

“If you know nothing, say nothing”.

I know concerned folks want to help, but bad advice is really hard to stomach when you are trying really hard to decide on the best treatment for your child for a complicated medical issue like seizures and epilepsy.

There were dozens of medications to study, and surgeries to consider.  It was overwhelming.

Someone’s “Two cents” was never appreciated.  There were several times when I was shocked into speechlessness.

I have two favorite examples, although I wouldn’t call them favorites at the time.

The first involved a woman known for talking about way too much, for way too long, way too often.

Before there was “Caller Id.” she called and I unfortunately answered the phone.

She wanted to say that she had heard that Rose’s medications were not working  and that we may want to try contacting some old woman on a farm in the northern part of the county that mixed up herbs and roots and maybe could cure her.

I am a firm believer in natural healing and herbs, but no stranger living out in the woods is going to fill my baby full of weeds and such.  We weren’t that desperate, yet.

The second shocker came in printed form. A well-meaning woman loaned me a book written by a woman doctor in another country. Her seizure remedy was to hook the patient up to a car battery and give him or her intermittent shocks to the system to kill the worm larvae that were clustering around the brain causing the seizures by cutting off the oxygen supply to the brain.  There was even a diagram with the article.

Now, there may be some incidences of worms causing seizures in Africa, but my baby did not have Ascaris lumbricoides.  I could just see me explaining that treatment method to the EMTs that show up at my house to take my electrically jacked-up baby to the hospital.

So next time some “Know It All” offers you some unsolicited advice,

imagine them hooked up to a car battery while chewing on some weeds and let it go.

Seizure Mama





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.


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.


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


Standby or Stand Down?

It is a very hard call for a mama of a child with a condition like epilepsy

to know when to stay close on standby

or back off and stand down.

The mother instinct is strong,

but I did not want a weak child.

It’s been hard to watch the knocks.

It’s been hard to let her fall.

We stand down almost all the time now.  How, you ask?

We let her fall years ago. She got back up.

Her seizures were never hidden. So there was no secret to protect.

She is so resilient.  That is what makes her able to be independent.

Seizures seized enough minutes of her childhood.

They should not be entitled to the rest of her time.

Seizure Mama


Fear of Fevers

This is the post excerpt.

If fevers caused the seizures, then all we had to do was stop the fevers.

So we watched diligently for the flushed face. Felt the forehead.

At the slightest hint of a high temp, we pulled out the ear thermometer.

If Rose had a fever, she got liquid product to bring the fever down,

These were usually red or pink.  Did they contain RED 40 dye?

Were we actually causing what we thought was a febrile seizure by giving her medication with Red 40 in it?

We didn’t learn that Red 40 was one of her triggers until two decades later.

I can’t beat myself up over something no one knew at the time.

There were twelve febrile seizures before the big one that changed everything.