I know this is full of scientific terms. If all the drugs that have failed you so far affect the sodium (Na) channels, you may want to ask about trying a drug that involves the potassium (K) channels instead.
My thoughts are always with you.
We have been busy taking care of my dad in the hospital.
Now he is home. My 88-year-old parents do not have internet.
I do not blog from my phone because it is difficult to see.
Rose has been helping with my dad.
She is concerned about getting back to school in the fall.
I have been sewing Covid masks and gardening.
I have not and will not forget you, although I may disappear for a bit.
Do not let epilepsy steal your joy.
Grab every little blessing with both hands and an open heart.
My seizuremama email is not synced with my phone any longer. (No time to figure it out.)
If you need me, email email@example.com or comment on either blog.
This is NOT a goodbye.
Stay strong Mama Bears.
Remember to take care of yourself, too.
This is a marathon, not a sprint. Pace yourselves and ask for help.
Seizure Mama/Flower Roberts
I was reminded by one of my other mothers how I felt
when IT came back.
A seizure happens after a long seizure-free spell.
You are thinking that IT has finally left her alone.
It throws her down while you are not there.
She is injured, you are shaken.
At some point we have accepted that IT will be back.
We will not let it steal the time in between.
We will do what we want and be who we want
until IT returns.
Getting back up is the most important part.
IT will NOT keep her down.
Attached is the post I wrote when Rose had her first seizure while away at the university. I was sad and angry and scared…
Rose called me Helicopter yesterday.
I cannot win.
If I give her space, I am avoiding and ignoring her.
If I stay in the same room, she is irritated on my sighing and noisiness.
I have been distracted and busy and frantic with my own tasks lately.
How can I possibly be a helicopter now?
I am not.
That’s my point parents.
They see what they feel. She feels crowded by me.
All those years of my being in charge and doing everything are haunting her.
There are ghosts here.
Seizure ghosts, struggle ghosts, pain ghosts and Helicopter Mom ghosts.
The past lingers. It steps on the heels of present. It shapes it.
I am no longer a helicopter mom,
but she still feels me hovering over her
long after I have landed…
or did I crash?
I absolutely cannot bear to see the mother with empty arms.
Holding her ghost child.
Every mother’s nightmare.
Epilepsy has threatened to take my child from me.
My child’s skin color is not a threat to her safety.
No skin color should be a threat to anyone of any age.
The Time magazine cover will chill you to the bone.
Those empty arms.
Lord help us.
Just so you know, I am still screwing up motherhood.
It’s the fear that gets me every time.
If I could ignore the fear, everything would be fine.
Is that possible?
Do not feel that I have abandoned you. My thoughts are always with you.
Especially through the struggles. I have many. I am sure you do, too.
There is so very much wrong right now.
We all have the pandemic sneaking around us.
We Americans have dirty politics and ugly racism with rioting.
I have had to turn my consciousness into a Venn diagram.
Circle of concern overlaps circle of influence, stay in the center.
Eat your own elephant. Stay in your lane. Put on some blinders.
Why am I turning myself into an ostrich?
Why am I ignoring my needy environment?
Because I am overwhelmed by it all. If I go down my family goes down.
My body told me to shut off the periphery and focus on me.
I refer to myself as “cracks and glue.”
The stress has opened some cracks.
A nervous tic in my eye, crying randomly, cramps, lack of concentration, constant agitation.
We have not had to deal with seizures or PTSD, so that’s good.
So what is a mother to do? We cannot take time off from motherhood. Especially now.
Keep your eyes on your prize ONLY.
Your prize is your child.
Somebody else is going to have to protest.
You are busy taking care of you and that fragile baby.
This is your team and your game. Stay in your field.
Ignore the created chaos. It is out of your control.
Focus on your goals.
Focus on your health.
Be a mother only.
Your child is your planet.
Don’t you wish this planet had a mother?
I did not want to leave you hanging with the term “Charlie Foxtrot.”
Story 52: Revelations
My sister and I rushed into the Emergency Room to find our parents. We located them in one of the cramped curtained cubicles. My parents’ young neighbor had awaited our arrival. We thanked her as she slipped out. My mom was in the bed, and my dad was in the only chair. We did not share the fact that Rose’s graduation was followed by a seizure in the parking lot. We were all focused on what the doctor was saying about Mama when the ruckus started on the outside of the curtain.
The first sounds were from a woman who was clearly miserable. She was loudly complaining about getting no help for her problems while a female doctor was calmly explaining why help had been delayed. This conversation grew louder until the patient was screaming about pain and needing to pee. I sent up a prayer for this poor soul. Apparently her physician had not authorized the medications needed to calm her suffering. I peeked out of the curtain to see her stumbling to the restroom carrying a specimen cup.
That’s when I saw the policemen, a swarm of blue right outside my mama’s curtain. I knew we were in a big city, but did we need this much security? As I was pondering my question, I heard the saddest sound I have ever heard. It was a long, soulful howl from a person around the corner and out of my view. The hair on the back of my neck stood up. My heart felt heavy in my chest. What was wrong with this person? Then there was a scream and a crash. The blue swarm encircled the source of the sounds.It was a young man in ragged clothes with matted hair. One of the officers was talking calmly to him, almost cooing to him like one calming a scared, wild animal. The other officers’ faces showed concern for the desperate man. They were letting him release his anguish while forming a barrier between him and the rest of the people in the Emergency Room. I stood behind my daddy’s chair with my arms wrapped around him. Only a curtain stood between us and this sad situation. I was fervently praying with tears rolling down my face. I was not afraid. I was not praying for my mama. I was not praying for my Rose. I was praying for this stranger who was at the end of his rope, broken and alone.
Those officers were heroes with heart. They formed a barrier between us and this chaos with compassion. When you are looking for angels in the world, you may not see their halos and wings. Instead, they may be wearing badges and uniforms.
So Seizure Mama’s pity party was abruptly ended by a look at real suffering. Once again, I was shown how lucky I was. I am a slow learner, but I eventually figure it out.
Seizure Mama speaks to parents:
A complete stranger crashed one of my pity parties again. It had happened before in our favorite hospital as I was riding down the elevator with a mother who was taking her child to hospice, while I got to take Rose home. It has happened over and over again, but I keep forgetting these life lessons. That we are blessed with family and friends, insurance, and health care. The biggest blessing of all is that Rose has developed fierceness and strength. She will endure. This I know.
This happened three years ago this week. Unfortunately, every bit is true.
Rose says it was the beginning of bad times for our family, but I know better. There were many unfortunate incidences before this. We just shielded our Rose from the trauma. This was actually when I began to realize I was not in charge. That has been a great comfort.
This story is near the end of our book. I consider the chapters that follow to be the best I have written. I guess I had to get really low for everything to come together in a Revelation. (Next story)
Story 51: Two Down One Night
The day of college graduation finally arrived. Rose was super excited. She led the procession of over four hundred graduates. She looked glowing in her cap and gown with gold tassels and sash. She had worked hard for this day for six years. She had taken classes at the community college part-time and worked at a restaurant just down the street. This ceremony was a victory for all of us.
We arrived early so we could save the entire front row for family and friends. I was there with my camera to get photos of Rose and her fellow students as they strolled past. I knew hundreds of these students from either teaching at the middle school or at the college. It was like a reunion for me. What a wonderful night for our family. My parents could not attend due to mobility issues, but my sister was there, along with Rose’s dad, his sister and her husband, Rose’s- two cousins, and her brother. Rose’s other set of grandparents made it to the ceremony. It was a big event for the whole family, one we thought we may never witness. But here we were watching our Rose, smiling brightly as she led the line of graduates to their seats. She looked so happy and beautiful.
The ceremony was really long, but I enjoyed watching many of my former students parading across the stage. I felt like I was graduating, too. In a way I was. I would no longer be driving here every day and spending hours in the library, the science building, and the parking lots. Our time here was officially ending. Rose had a plan of what to do next, but I did not.
The ceremony ended. There were more photos and many hugs. As we were all parting ways, my sister’s phone rang. Our parents’ neighbor called to tell us that our mother had fallen down some steps backwards. She was being transported by ambulance to a hospital. The neighbor was driving my dad to the Emergency Room. The hospital they were going to was over an hour’s drive from where we were. We decided not to share the news with Rose. We wanted her to have this special night without the worry.
My sister and I raced to her car. We drove to my house to pack a few things before heading to the hospital. As I was rushing around my room throwing clothes in a bag, my cell phone rang. The man on the line stated that he was with the Emergency Medical Services. He told me my daughter had fallen and gotten injured. “No,” I said. “My mother has fallen. We are on our way to the hospital now.” “No ma’am,” he replied. “Your daughter has had a seizure and gotten hurt.” I collapsed on the bed screaming. My sister rushed into the room. I told the man to call my husband’s phone. I gave him the number. I hung up my phone only to hear another one start ringing in the other room. My husband had left his cell phone at home on the charger. My phone rang again. It was Rose’s friend Carol trying to find anyone in Rose’s family. I gave her Rose’s brother’s number. She called back minutes later to tell me Rose was fine now. I was hysterical. Lightning might as well have struck me. God PLEASE, I am not this strong! Two people I loved needed me and I was apart from them both. There was nothing that I could do. Helpless and hysterical! The combo from hell!
My son called the house phone soon after. He and his dad had run back up the street to the college to be with Rose. Her dad got on the phone and told me to head on to the hospital to take care of my mama. My sister drove that hour as I rode in silence, wondering why life can’t just come at you in single file instead of a damn Charlie Foxtrot.
Seizure Mama speaks to parents:
Yes, I was mad. I felt like God had pushed my mama down those steps while I was busy at Rose’s graduation. Then he lured me into a car with my sister and threw Rose down in the parking lot the minute my back was turned. My status as superhero had been sabotaged!
I was about to get another lesson about my not being in charge. I don’t know where I got the idea that I was a super-hero, but that role kept getting snatched away from me. Instead I would get stuck being a helpless observer, on the sidelines watching life go on with no help from me. My mama had fallen down. I wasn’t there to save her. My Rose had just had a seizure. I wasn’t there to help her either. How dare God take the wheel of my car? Who did he think he was dealing with?
Does this sound like the rant of a grown woman? How about a crazy woman? Let the anger out. Then take a deep breath and do what’s within your power. No superpowers available, just you doing your best for your child.
Rose has her own garden.
Rose only has one rose in it.
She loves Asiatic lilies.
Her garden looks like a rainbow.
I love it that Rose loves flowers.