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…
Story 26 (fall 2002)
Rose stayed home from school during the first semester of the fourth grade,since she was having several seizures per week. They were not like clockwork, so we stayed poised and ready at all times. No one ever really relaxed. Every loud sound sent us running toward it. I helped her wash her hair before letting her have a few minutes of privacy behind the shower curtain. I sat on the toilet while she washed. When the curtain opened, I wrapped her in a towel and quickly dried her hair. We avoided both hot and cold extremes, since we thought her seizures might be triggered by temperature fluctuations. The bathroom floor, which was ceramic tile, was covered by numerous rubber-backed rugs in case of a fall.
At this point we rarely left her side. She seized everywhere doing anything. When we went places we held on to her. She got in the habit of walking everywhere arm-in-arm with another person. We carefully picked where she sat. Was the chair stable and sturdy? If she fell, what would she hit? I am sure other parents were puzzled by our behavior. Observers could not see anything wrong with our lovely Rose. We must have seemed like over-protective, hover-smother parents. We got looks and sometimes inquisitive comments. These meant nothing to us. We knew we had to protect Rose from gravity. A hard fall meant a hurt face, or shoulder, or arm. She could be thrown down with great force at any second. There was no place to go where there was no gravity, so we were there to stop the falls. If the seizure/terrorist did not show up today, and we had not seen it yesterday, then it was coming tomorrow.
So we spent most of our time that year alone in our seizure-ready home full of rugs and pillows. Few folks came to visit. We did not want much company. We disappeared off everyone’s radar. It was just us, Rose, and the epilepsy, trying to get through each day safely.
The elementary school sent Rose a teacher. He would arrive in the afternoons. Our library room would be straightened and dusted, readied for his visits. The table in the center of the room was cleared and polished. The ceiling fan would be turned on low. A snack would be prepared for presentation to Rose’s guest. I would meet Mr. F at the door with a smile. Rose would be dressed and ready for her lessons.
These afternoon lessons were a blessing to me and Rose’s brother, as well as to Rose. The teacher acted as our back-up Rose-monitor. I could retreat to the kitchen to fix supper, within ear-shot. I could not discern what Rose and her teacher were saying, but I could hear the steady rhythm of her teacher’s voice, punctuated by Rose’s laughter. She loved Mr. F’s visits. Sometimes he was the only non-family member she saw during the week.
My son enjoyed these afternoons as well. He got on his bike with a walkie-talkie attached and rode through the woods surrounding our house. He knew he could be called back home if needed. Mr.F was there, so he could relax. These afternoons were a respite for him. He loved riding his bike and he felt peace in the forest. All was well during the afternoon lessons.
Seizure Mama speaks to parents:
You cannot do this alone. Being on edge every minute will poison you. It will poison your whole family. Get some support. All of you need some relaxation and rest. You are playing a long game here. Do not put your life off until this is over. This is your life now. Things may change for better or worse, but now is what it is. You all have to survive and thrive together.
These afternoon lessons let my son be a little boy for a few hours. Being a big brother is a huge responsibility when the little sister has seizures. At these times he could be free to ride fast and dream big. He would later become a mountain bike racer. He and his dad enjoyed this sport together. Those seeds of passion were planted on those afternoons when he could just be himself. I will always appreciate Mr. F for the gift he gave to both my children.
Story 25: February 2002
When the seizures were relentless, we never left Rose. EVER. This is no exaggeration. I stayed with her almost one hundred percent of the time, even when her dad was at home. I was a scared steadfast sentry. Once every few weeks I would go out shopping by myself. It seemed strange that the world was going on as if nothing was wrong, while we stayed home waiting for the next catastrophe.
On one of my rare outings, I ran into a mother of a boy who was on my son’s former coach’s pitch ball team. I had not seen her in years. She was wealthy with a healthy son. She proceeded to bend my ear about all her problems. They had to clean their rental condo at the beach themselves. Her parents needed her to drive them to doctors’ appointments. She continued to list her problems for many minutes. I do not know why I did not walk away. This was my brief period of time out in the real world and I was standing in a store listening to an acquaintance complain.
Our world was tiny and tense. Rose’s dad and I were not a couple, we were a tag team. Somebody had to work. Somebody had to shop. I was holding down the fort single-handedly while my husband and son went on and went out. This was a tough time in our marriage. We were Rose’s parents and protectors. We were mom and dad, not mister and missus. There was never a chance to be alone together. We were on duty twenty-four/seven.
We expected Valentine’s Day to be more of the same- the four of us, at home alone. But my sister-in-law had different ideas. That evening she and my brother-in-law and nieces appeared at our door. She had cooked a romantic dinner for two and brought pizzas for everyone else. As they ate pizza in our library, Rose’s dad and I sat at the kitchen table alone, enjoying a delicious meal. It was hard to know what to say to each other. Our conversations were always about the children, planning the next doctor’s appointment, discussing drugs and side effects, planning a school project, or scheduling our son’s transportation to races.
What does one talk about during the eye of a tornado? We mostly enjoyed our silence as we listened to the chatter in the next room. We were thankful to have family and happy to be together but not alone. That romantic dinner was a shot in the arm, a booster to keep us going as a couple while we struggled as a family.
Seizure Mama speaks to parents:
First, do not be that woman in the store. While you are standing there bombarding someone with all your issues, they may be silently suffering with more problems than you ever dreamed of. Don’t be a “Debbie Downer.”
Second, you are not just your fragile child’s parent. You have other children, siblings, parents, friends, and coworkers. These people need you and you need them. Let them know how to help you. They want to, but are not sure what to do. When Rose’s seizures occurred frequently, the families in our church took turns bringing us meals. We loved seeing our friends and doing a little less cooking and shopping. Rose got to see folks other than her tense family.
Lastly, a divided house can not stand. You need to stay married. Don’t keep your child as a barrier between the two of you. Someday your baby will grow up and move on, and two strangers will be sharing your house. You are not just modeling parenting; you are also modeling a marriage.
I have been reading another insightful memoir written by a person with epilepsy.
Each one I read brings back memories of our struggles.
Each also reminds me that this is not over for us.
Epilepsy rarely vanishes.
It does, however, hide for long periods.
Rose does not want to know this.
Neither do I.
So we are living like it is gone while we can.
But when it returns,
we will need you.
It will be hard trying to fit our big lives
back into the confined space of seizures.
While she was home for fall break, she dropped her shampoo in the shower.
It was her habit to say something to let me know she was okay.
She did not say anything. I made myself stay in my bed and listen.
Fear is never far away.
We will need you.
(I almost entitled this “She Will Need You”)
We are still tethered together.
Mother and daughter.
Epilepsy and fear.
Story #22 (Most of 2002)
The drug roulette regimen made everything worse. Rose was not herself before a seizure nor after a seizure. She was lethargic, floppy, and dopey. She moved from her bed, to a chair, to another chair, and back to her bed. The seizures came with us wherever we went. She seized in restaurants, at birthday parties, at Brownies, in the yard, watching television, in a big box store while shopping for a helmet, at a family reunion, in a funeral home and even in swimming pools.
We took a plastic Adirondak chair with us on outings. The chair reclined slightly, so she could seize in it without falling out. For us every party was BYOC(bring your own chair), and of course the seizure bag went with us everywhere. We evaluated the risks of each outing. Should we go eat at this restaurant? No, it would be too hard to carry her out through the gift shop. She we go to a ballgame? No, seizures in bleachers are too dangerous. Should we go? No. Eventually, we stayed home waiting for the next seizure. I really wanted to buy a little wheelchair, so we could go places, but was advised against it by other family members. “Rose would look handicapped and feel handicapped.” Yes, but she would be safe.
We walked everywhere linked arm in arm with her. A fall could come at any second. We went up and down our stairs as a unit so she would not fall. We called this method ‘stair pairs.’ To go down Rose would put her left hand on the person in front’s shoulder and her right hand on the handrail. The front person would put their left hand on hers and also hold the rail with their right hand. Going up would be reversed with her escort behind her. Rose would announce when she wanted to go up or down and someone would stop what they were doing and escort her. We made it a point to not say no to her requests to use the stairs. There was so much she could not do at this point; at least she could be free to move about in her own house.
When no one was in a room with Rose, her father, brother or I would whistle two notes and she knew to echo the two notes back. We whistled instead of calling her name so she knew we were just checking on her instead of needing her to come to us. We whistled to her about every three minutes. It got to be so much of a habit that I would catch myself whistling notes when Rose was not with me. She slept with me during these terrible months. Sometimes she would whistle in her sleep.
We referred to this technique as “echo whistling.” If she did not repeat our two notes we would call her name. If she did not answer, we would rush to find her. Sometimes she was just too busy to answer, but a few times we would find her unconscious, leaving me feeling feel guilty about leaving her alone. Negligent for three minutes. Shame on Seizure Mama!
Take a chair, echo whistling, stair pairs. This is how we kept her safe as the seizures took over our lives.
Seizure Mama speaks to parents:
You need to devise methods like ‘echo whistling’ and ‘stair pairs’ as part of your everyday routine to keep your child safe. We used two notes for ‘echo whistling’ because Rose had complex partial epilepsy and could do repetitive automations, even at the onset of a seizure. She could probably whistle during these periods, but could not echo the two notes from someone else.
I had just returned from a trip when Rose called to report her sickness.
I left my suitcases packed. I left my phone on all night. I did not sleep.
I was back in Mama Mode.
I was ready to jump in my car and speed to the rescue.
Rose assured me she would be fine. She just wanted advice.
I wanted her to call 911 if she vomited. Imagine that. Ridiculous!
She texted the next morning that she “woke up perfect.”
I got to unpack my suitcases and take a nap.
I keep my helicopter gassed up and ready to hover.