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!
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?
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.
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.
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.
We would not allow Rose to go up and down the stairs in our home alone.
Her seizures were sudden and strong.
Her arms would go out straight and stiff as she dived face first into the floor.
To be sure she was not alone on the steps, we devised “stair pairs”.
As she went down, someone was directly in front of her.
She would put her left hand on her partner’s waist. Both persons held the handrail with their right hand.
It was like a down-the-stairs dance.
The same was true of going up the steps, except in reverse.
The partner would be in the back with his/her hand on Rose’s waist.
Everybody knew the drill. All she had to do was call for an escort.
Safety on the stairs.