I want to send a message straight from my “mama heart” to yours.
It’s about knowing what you can do and what you cannot do.
There are better tests, treatments and therapies now. Keep searching for the right ones.
Everyone’s epilepsy is different. You have access to more information and support.
You cannot do everything. You cannot fix everything. You cannot be everything.
Guilt is toxic. Depression is damaging. Exhaustion is depleting.
Trust yourself to do your best. That is all you can do.
Be kind to your frazzled self.
Look for tiny bits of joy everywhere.
Pause to ponder and wonder.
Protect yourself and rest.
Your fragile child needs you.
Take care of you, too.
I know your pain.
A tether is a connection of a mobile thing to an immobile thing
to limit the movement of the movable part of the pair.
The irony of this description is not lost on me.
Rose was prevented from flying away and I was immobile.
I am the heavy, the anchor, the immovable.
Who wants a heavy, immovable mother?
Who wants to be heavy and immovable?
Maybe I have been looking at this the wrong way.
I want to move, too. I want to fly, too.
I am still stationary long after my Rose bird has flown.
I am still here holding down an empty fort.
I am still here.
Still tethered by fear and habit and age.
I need to rise up. I need to look up.
I need to be free from the hanging, empty tether.
Free to be me.
Whenever I miss Rose, I go to the Rose Museum.
Her entire life is archived into this small space(her room).
The wallpaper has not been changed.
The walls are covered with photographs and ribbons.
The shelves are stuffed full of photo albums, books and DVDs.
There are fairies everywhere.
The closet is packed with shoes, dresses, purses and toys.
Things go into the museum, but they never leave.
I am not allowed to straighten or clean.
I must dust delicately and sweep carefully.
Why the archives? She needs to remember.
Her memory cannot be trusted.
There were too many drugs and too many seizures.
The museum is her memory.
I do not need it to remember Rose, but Rose does.
I am a bit antsy.
It reminds me of how I used to feel when the school year ended.
I am glad to be done with publishing our book, but now what?
I have no reason to stay home and stand by.
These past years have been lonely, but busy.
Now it is just lonely…and winter.
I will reinvent myself again. That is nothing new.
I need to be useful, or at least feel useful.
As I am putting the finishing touches on our book,
I keep telling myself to “remember my audience.”
I want our book to help parents of children with epilepsy.
I have honestly documented events in our lives.
I have added a “Seizure Mama Speaks to Parents” after each story.
A letter to parents begins the book.
An epilogue tells about writing the book and blog.
The last chapter is about letting Rose go it alone.
That was always the goal.
What else do you need parents?
I am thankful to have this blog,
so I do not TOTALLY feel this is our ONE SHOT.
I want to do this right.
HELP ME HELP YOU.
I need honesty from my “OTHER MOTHERS.”
Seizure Mama/Flower Roberts
Image by our fabulous publisher JAHBookdesign. Just the beginning…
I appreciated this honest memoir Brain Storms: An Electrifying Journey by Kate Recore.
She did a great job of conveying her years of struggling with epilepsy.
Unfortunately she also had struggles with bad doctors also.
She was misdiagnosed by a male neurologist who diagnoses her issues as mental and emotional NOT physical.
He was forced to change this opinion after a second EEG confirmed seizures.
Insurance HMO’s did not help in Kate’s quest for help.
I got the sense of her maturing as the book chronicles her young adult years of trying to become independent.
She fells that sharing her story will help other young women dealing with sexist or paternalistic physicians.
I am super proud of Katie Scarlett Taylor for blazing a trail for young ladies like my Rose.
Thank you Kate Recore!
Story 26 (September 2002)
After the toxicity scare, we no longer had confidence in neurologist #1. The doctor’s responses to our questions seemed short and unfocused. The drug and dose changes that she recommended seemed random. Our chart of drug changes was full of changes in dosages and seizures.
We asked for a second opinion. This first neurologist sent a letter of introduction for Rose to another neurologist in a different city. The letter described Rose’s condition and drug trials and requested a second look at Rose’s possible treatments for the future. I bet neurologist #1 was happy to pass hot-potato Rose off for some re-enforcements. I appreciated that a second specialist was going to have input into Rose’s care.
Our first visit with neurologist #2 took hours. He was very thorough and reassuring. He wanted to nail down the type and source of these seizures. He felt that Rose had been prescribed too many drugs on too small doses to rule them out as an effective treatment. He wanted Rose in an Epilepsy Monitoring Unit(EMU) to get a video-EEG. He said he felt we had been yawing around the pond of treatment choices.
This was a relief for us. We felt the same way. I was like Rose had been part of a badly designed experiment with too many variables. We were now going to get some hard data we could use to get better results. We finally felt hopeful.
We felt like this doctor heard what we were saying and understood what we were feeling. We didn’t just want to try something new. We wanted what we did next to be the right choice, not just a random change. We needed all the cards to be put on the table. It was time. Rose needed to learn and grow, not fall and fail.
Seizure Mama speaks to parents:
No one doctor knows everything. Each has his/her own training and experiences. It is always good to get a second opinion. Do not be afraid to ask for one. It may be just what you need to get a better result. Your current, struggling physician may appreciate your nicely worded, respectful request.
Do not, however, bounce from one specialist to the next in hopes of finding a quick fix. Patience is needed when trying out drugs and doctors. Do not secretly sneak around because each physician needs to see all your child’s records to make informed decisions and avoid repeating failed treatments.
I would also advise getting a second opinion for any surgical procedure. Even though installing a VNS(vagus nerve stimulator) may be a simple procedure, the device is permanent. You are making decisions for your child. Do it carefully and wisely. Get as much input as is reasonable.