The Long Haul

I have been reading books about publishing books.

Sometimes I want to throw up my hands and run back to my garden.

More time and effort is needed than I want to invest.

But this is not a vanity memoir.

This is not just Rose’s story.

It is the story of our family navigating the epilepsy journey together

and coming out the other side whole.

I know folks that need our stories which mirror their own.

I will keep struggling to maintain a balance between our present and our past.

We know there is someone out there that needs us.

We will hold fast for the long haul

and stay the course.

So our stories will keep coming.

Slowly but surely.

Seizure Mama/Flower Roberts

Story #8: Preschool for Two

After the series of seizures in the hospital, drug 2D was weaned down and replaced with drug 3S. This new drug was sprinkled onto pudding or peanut butter. The new set of side effects to watch for were hair loss, increased appetite, and learning issues. Well, at least her gums were safe now!
Rose’s birthday is in October so she was either going to be older than her classmates or much younger. Since she was small and had health issues, we had chosen to keep her in preschool an extra year before starting public school. We were glad that we had done this in view of all these ear infections, drug transitions, and seizures. I wore a beeper on my belt at this point. I would drop her off at preschool and go walk at a park down the road or visit grocery store located just across the highway. I was never more than two minutes away. Rose and I were tethered together out of my fear. These Mother’s Morning Out days of preschool were our only break from each other.
Our family loved this preschool. We knew all the teachers well since Rose’s older brother had attended there a few years earlier. The one person on the staff who was not my friend at the time was the director. She was gruff and blunt. She said what she thought without any sweet Southern filter.
When Ms. B heard about Rose’s surgery and the following series of seizures, she phoned us. She informed us that the church preschool could not be responsible for handling medical emergencies. The teachers were not trained for these. Rose was a liability risk. This was hurtful to us, but I also understood it. Rose’s teachers truly loved her and if anything happened to her on their watch, they would have been devastated. By law, public schools have to accommodate students with special needs, but churches do not.
Our options were to pull Rose out of her preschool or have me stay in the building every day while she was there. We were not going to tell Rose at the tender age of five that she was not welcome back into her beloved preschool because of her seizures. Instead I simply stayed at the church every day. The staff knew that I was upstairs in an empty room near the director’s office. I was only a shout away if needed. I read books and studied. Other mothers and teachers dropped by for visits. The director came by to check on me. I began helping her out with needed tasks. Then I cataloged all the children’s books and repaired them. I even substituted when other teachers were sick.
The experience was good for all involved. Rose got to stay in school and her teachers did not need to worry because I was close by. The director and I became good friends.
When Ms. B would drop by to check on me everyday, sometimes I shared my worries. Once when I was obsessing about an upcoming event, she said, “Don’t cross the Fox until you cross the Fox.” She then went on to share that this was some advice from Abraham Lincoln. Apparently there was a Fox River. As folks traveled toward the river they worried about whether the river was up too high or moving too fast to get across. Lincoln was reminding folks to wait and “cross that bridge when you get there.”
Once Ms. B caught me crying. I was overwhelmed by all the hoops we were having to jump through to get help for Rose. She looked into my eyes and asked, “How do you eat an elephant?”and then answered, “One mouthful at a time.”
Seizure Mama speaks to parents:

Forcing the responsibility for your child’s safety onto others is not fair to them or to your child. If your child’s seizures can be dangerous or even life-threatening, you want a willing and competent person in charge of his/her care. You must be an advocate and an assistant. People fear what they do not understand. You must educate the people around your child about epilepsy. Yes, there is a stigma. There will be some shunning. But if you confidently share information with others, there will be no surprise,or public revelation to dread. We were always open about Rose’s epilepsy. This is so much better that trying to guard it like a secret. Be brave and honest. Would you hide your child’s asthma or diabetes? Of course not. Then do not hide this condition. There should be no shame. If your child senses your shame, he/she will feel ashamed of it,too. Do not hand them a handicap.

Stop this Snake

I have a sneaky seizure snake

coiled in the back of my mind.

It stays put most of the time.

Sometimes it strikes

with electrical venom

and shocks my brain.

It slithers through my thoughts

and steals them.

I wish someone strong

could put a heal on the head

of this seizure snake.

 

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

 

 

 

 

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