When you don’t know what to do,
I am in a quandary this morning.
Rose came home.
There are concerns about summer plans.
I am unsure of how to proceed with publishing.
One thing I am sure about is
I will keep busy today.
I will circle the gardens with a bucket and scissors.
If it rains I will move inside to do laundry and clean the shop.
If all else fails I will sort beads.
I know this sounds crazy.
It helps me to stay out of the worry maze.
If YOU can’t get to YOUR Happy Place, at least stay in a busy place.
Doing something helps me think.
I have a lot of thinking to do.
When Rose was in eighth grade band, the middle school band was invited to join the high school band to play during a football game. Rose sat with all the other trumpet players in the band section of the stadium.
Rose’s father and I sat in the adjacent section where we could keep an eye on her. We were concerned because Rose hated loud noise. We had instructed her to take out her tiny hearing aid while the band played. This hearing aid was red and the size of a kidney bean. It cost thousands of dollars and was not covered by insurance.
At some point during the first half, we noticed a disturbance where Rose was sitting. She was having a seizure. I rushed down to her side. The band director gave the other band members the okay to go take a break. This made it easier for the EMTs to get to us. Rose stayed unconscious for quite some time after the seizure. Her dad went to get the van and drive it up to the back of the stands.
It was about then that I noticed that Rose’s hearing aid was not in her ear. I searched around her. There was no little red bean. I went through her pockets. No bean. The EMTs joined in the search. We made quite a spectacle. Unconscious Rose, her mama, and a bunch of men in uniform scouring the empty stands.
The band members returned from their break. The band leader asked if I minded if they played some music. The music resumed. Rose aroused. A group of men helped haul Rose up the stadium steps to the van. As I followed them up the steps, a woman tapped me on the shoulder and asked “What were ya’ll lookin’ for down there?” She was curious about the lost item, not the unconscious girl. I guess asking about Rose would have been rude.
When we got Rose safely into the backseat of the van, I informed her dad that her tiny hearing aid was missing. I searched her pockets once more. Tucked down in the corner of her jacket pocket was that tiny expensive bean. I was so relieved and happy.
As we drove away from the school, Rose’s dad turned to me and asked, “Other than that, Mrs. Lincoln, how was the play?”
Seizure Mama speaks to parents:
It may be futile to try to keep your child’s seizures a secret. Rose’s condition was known to everyone at church, at school, and out in the community. We never tried to hide her epilepsy. There was no point in it. It went with us wherever we went, whether we liked it or not.
Folks with epilepsy have a whole extra set of preparation for trips.
Rose packs seizure supplies in addition to everything else.
To prep for her trip with peers,
we purchased some downloads from The Epilepsy Foundation of America.
These were 8.5 by 11 inches.
I reduced them on my printer and printed them on card stock.
Then laminated them, punched holes and attached ribbons or clips.
Rose gave some to the people she will be travelling with.
She will also attach copies to her belongings.
That way there will always be instructions on what to do on hand
IF she has a seizure.
Proactive is so much better than reactive.
I will share this with the EFA.
Maybe they will produce something like this for travelers.
It has stayed in its envelope.
We move it about.
“Put is somewhere.” he says, “It will get bent.”
It is our church directory portrait without Rose.
She was away at the university.
We three went to pose for our family portrait.
But our family has four.
It is a photo of my worst fear.
The three of us with no Rose.
This photo is lovely,
but it will never find a frame.
When Rose started to middle school, Mama went, too. There was an eighth grade science teacher opening which I applied for and got. There was a collective sigh of relief from all of our family and friends. The middle school was too far away from our house. I could not get there fast enough if there was an emergency. The route there was all two lane roads. What if there was a tractor, a train, a wreck…?
So Rose’s mama went to middle school. It was a good thing I did. There were sicknesses and seizures that had to be dealt with. The entire staff knew that Rose’s mama was only an intercom call away. I would hear my name followed by “Get to the gym.” or “Go the nurse’s office.” I would take a deep breath and run toward Rose as someone met me in the hallway heading toward my classroom to watch my students during my absence.
Adjacent to my classroom, I had a storage room for science equipment. We kept a fold-out cot with pillows and blankets in it for Rose to sleep off her seizures after being rolled to my room in the closest available rolling chair. It was a comfort to Rose and me that I could peek through my back door and check on her without missing a beat teaching my students.
This is how we handled her emergencies during those years. We were still searching for the perfect combination of medications. She had some learning issues and hearing issues. Then there were several surgeries. Rose needed support. I was the “mama in residence” again, there to make sure she was taken care of.
On a particularly hectic Friday, I was called over the intercom to the band room. There was a band concert. Rose played the trumpet in it. I ran to the band room to find her unconscious on the tiered floor among scattered chairs and music stands.
(Please pause here to envision this setting. A stair step type floor plan, rows of chairs on each level and tall, black, metal music stands everywhere. Lord, could we not have this seizure somewhere else?)
Two other staff members stayed with us in the band room until Rose woke up. Instead of her normally docile self, she woke up swinging. I could tell she did not know where she was. Sometimes she is blind after a seizure. I kept trying to talk calmly to her, but it was as though she did not recognize my voice. I tried not to panic as several music stands were knocked down, which caused more to fall. There was a domino-effect. More crashed to the floor. It took quite a while to get Rose calmed down. The band students were waiting outside the door. They needed to put their instruments back in their cases. It was time for school to let out. They needed to come in and get ready to go home.
Rose’s dad and brother came to help us. I made a call to the our neurologist. Drug 8K dosages would be increased. No one lost her head. The show must go on.
Seizure Mama speaks to parents:
I was very fortunate to get to work at Rose’s school. It got us through those years. They were not easy for any of us. I was a trained high school biology teacher with community college experience. I would not have chosen to teach middle school. I loved my students and my peers, but the stress slowly took its toll on my health. I knew this was not going to end well, but I had to make it through seven years.
The high school was right across the road from the middle school. If I did not get a job there when Rose went to high school, I would just remain the sentry across the street, only a phone call away and a quick drive across the road. The drive over would be followed by a panicked run to a designated location. I could endure seven years in eighth grade to save Rose. I could do that. I thought…
So what does this mean to you? There will be many sacrifices made for your fragile child. Do not let your own health be one of them. I lived through my time in middle school, but damage was done. I am better now, but there were times when I was truly terrified for my own well-being. I am very protective of myself now. I have to survive Rose’s seizures, too. Rose needed me whether she liked it or not. We were tethered together by her epilepsy. If one of us went down, we both went down.
Take care of yourself, too. United we stand.
I ordered this shirt for Rose. She has hit a rough patch.
When she called several days ago she was upset.
Someone she trusted had hurt her.
She said she had put some walls back up.
I have been thinking about those walls.
She has had to protect herself from harm more than most.
It’s a fact of life for her.
Like someone saying they were putting on a raincoat when it rains.
She just does it when it needs to be done.
But those walls work two ways.
What keeps others away from you, also keeps you away from others.
Rose knows this. She went and had words with this person.
Some of those walls will remain. Rose is savvy about some things.
Trust must be earned.
Some walls need to stay where they are.
I was just glad to hear that she had torn down some old walls while off at the university.
Watching Rose Rise make me proud.