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!
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.
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.
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.
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.
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.