We are #17!
(Chapter 15 of Seizure Mama and Rose reexamined)
No one welcomed epilepsy back into the family. We did not want it. We did not want the doctor’s appointments, we did not want the drugs, we did not want the side effects, the struggles, the limitations and most of all, the fear.
Epilepsy was back to claim pieces of our lives. It was back to take Rose’s independence. It was back to whittle away at all her hard-earned progress. She had been free. She had been thriving and growing.
What tricks would it play this time? What events would it ruin? Where would it throw her down to the ground? What would the new drugs do to her? These were the thoughts that swirled around in my mind. I wanted to reject this reality. We all wanted to deny epilepsy’s return. It would not let us. It refused to be ignored.
We all have things that we want to reject. I did not know how much of this I did until recently. It seems I do battle with reality quite a bit. One of Rose’s many doctors referred to this as “shoveling sand against the tide.”
I have been shoveling sand throughout adulthood. I have fought the many things I did not want to accept. I have depleted myself trying to change the inevitable. What good has this done? None. It has been harmful.
This is where you come in Another Mother. You will be the best mother you can be to your fragile child. You will search for the best doctors and the best treatments. You will support your child to be his/her best. Then put your shovel down and rest.
This is not giving up. This is not defeat. This is acceptance. With acceptance comes peace.
I am going to have to accept quite a bit that I cannot change, epilepsy included. This is not the reality that I would have chosen for myself, but it is what it is. Life happened while I was planning other things. Wishing and shoveling will not change whatever is coming.
I am just going to let things happen.
I am putting my shovel down.
We finally made it home from the hospital that Friday evening. Rose’s dad and grandfather headed back down the interstate in our truck to retrieve all my garden art from the booth of the show we had hurriedly abandoned that morning. Rose had been given a loaded dose of drug 3S in an IV. She slept on the way home. My parents came and stayed with me, my son and Rose so that we would not be alone after such a traumatic and exhausting day.
Rose slept for the first several hours. When she woke up and saw that it was dark, she realized that she was missing her friend’s birthday party and sleepover. She had been really looking forward to the event, even though we had warned her she could not spend the whole night. She cried about not being able to go to her friend’s house. I calmed her down and she went back to sleep. She slept in bed with me that night so I could keep an eye on her.
During the night, she woke up screaming “I want my lunch”. Rose usually packed her lunches for school and got to take a special lunch that she picked out herself on Fridays. She had awoken and realized that her special lunch had been left uneaten at school and would be ruined by Monday. She loudly repeated “I want my lunch.” over and over again for almost an hour like it was a mantra. I tried to calm her, but there was no consoling her. By the end of that hour, Rose and I were both hysterical.
I always tried very hard to not let Rose see me upset. We kept a brave face during most of her seizures. This time, I was truly scared that something had happened to her brain. I tried telling her we would get her a new special lunch for Monday, but I knew what she really wanted. She did not really want her lunch back. She wanted today back. I wanted today back, too. Rose knew she had epilepsy again. That awful nurse was right: it had never left us.
The little girl who had the party and her mama came to visit us the next day. They brought Rose a bag of goodies from the party. I always appreciate gestures like this. They mean so much.
Seizure Mama speaks to parents:
Your hearts will be broken over and over again. You must keep going. You must keep living with this enemy. You cannot let it steal your the life from you, your family, and most of all your child. Yes, it will knock your baby down, but you must help him/her right back up. Getting up is what is important.
Do not let epilepsy keep them down. Do not let it have an extra second of your lives. Epilepsy may steal minutes from days, but you can fight for the rest of the time. Make that your life- the time between. Make that time the best you can make it.
(We started calling this event the beginning of Phase II Epilepsy.)
I wish I did not have so much experience with Emergency Rooms.
Thankfully, Rose’s rescue medications kept us out of the ER for most status episodes. When we did make the trip, it was because of additional trauma. Some trips involved stitches, others included xrays.
I was always thankful for the support but did not like handing over control to strangers that did not know our history. I love finding empathy in the ER and loathe encountering arrogance. I have never handled being talked down to be an egotistical male well. My response is magnified by my fear as a mother.
I am sure no medical jerks read this blog, but maybe you can join me in combating this issue when it arises in your experiences. Big egos make bad choices due to an excess of self-confidence. Complain to their superiors after the fact. Be sure to record names and events.
Cool-headedness is needed in ERs, not big-headedness. I hope you never encounter this issue, but you probably will.
Seasoned Seizure Mama
There was quite a crowd in Rose’s room at the ER when we arrived. We learned one of our good friends from the school had ridden with her in the ambulance. This was a relief to me because I did not want Rose traumatized by waking up in an ambulance among strangers. Her teacher, Ms. S soon arrived with her usual dramatic flourish. She had us laughing within minutes. Ms. S admonished her little “Turkey Toes” for leaving class early. Another friend who happened to be volunteering as a Rainbow Reader in the classroom next to Rose’s came to check on us. I stepped out in the hallway to cry with her. She knew how hard this had been on our family in the past and understood what this meant to our future.
I took notes about everything that was done on the backs of the forms and envelope from my art show. My notes were a mess by the end, crumpled and tear stained, but I was thankful that we had that paper. Things happened so fast and needed to be written down. When Rose’s dad or I left to go to the restroom, the other took over the note taking. We learned to do this in the beginning. That way her parents and caregivers all stayed on the same page in terms of her treatment.
A male nurse blatantly asked me why this seizure was so upsetting to me. I started to explain that we had hoped that Rose had outgrown her childhood epilepsy. He flatly stated that epilepsy is not something that can be outgrown. A kick while you are down is never a good thing. I will always remember his name and his face.
I know this nurse was puzzled by my extreme sadness when Rose’s medical chart clearly stated she had epilepsy. This is the same hospital where she went had gone status after her tonsillectomy three years earlier. The details were all right there for her doctors and nurses to read. I am sure I was expected to be a seasoned seizure mama by this point. I am not sure there is such a thing.
Seizure Mama speaks to parents:
What was not in Rose’s charts was how much we wanted to believe epilepsy was behind us, the seizures, the drugs, the side effects, and the fear. That’s not something medical workers can read in charts. They do not see the full picture. The quick parade of patients does not allow them time for reflective thinking. I know that those handling constant emergency situations have to think quickly on their feet.
It reminds me of my years as a teacher, when I had so many children I didn’t know what to do. I was never enough at school. Then I would come home feeling too exhausted and stressed to be a wife and a mother. I respect the workers on the front lines at the hospital. But they, like teachers, cannot know all the details.
That said, no one can expect to be handled with kid gloves in the Emergency Room. We have been there many times. The medical workers gather data, assess the current situation and decide on an immediate treatment. This is “life in the fast lane.” We parents must pay attention, write everything down, and be nicely but firmly proactive.
(Then and Now for Chapter 13: Epilepsy Again)
This event changed our lives in many ways. It was the beginning of many ends.
It was the end of our hope that epilepsy was gone for good. It was the beginning of ending of my business as an artist. I temporarily lost faith in being able to balance living our lives fully and keeping Rose safe. I felt punished for focusing on anything else but her. It seemed like fate had slapped our hands for moving on. Epilepsy wanted our complete attention.
The part of the story that STILL baffles me is the timing. The seizure occurred at the exact worst time that day. If it had occurred an hour before, we both would have been home and gone straight to Rose’s school. If the seizure had occurred an hour later, her dad would have been at home, on stand-by, and I would have stayed to finish the first day of the show. No ambulance ride. No trauma for all involved.
It was the timing that made me feel cursed, damned, and unlucky. It seemed like a perfectly aimed shot at our sense of well-being. Like that seizure had waited until it could have the most impact on all of us. Could we not stand down for two hours? Couldn’t epilepsy let us get out of town? Must we be scared sentries every second? I had been lugging around that big, heavy bag-phone and wearing a beeper for three years. Why then?
I guess my puzzling about the timing may not seem helpful to you. Maybe I should focus on the importance of having the rescue medications at school. I could be going over the emergency bag contents. It may be better to include a list of step-by-step instructions in body positioning and safety protocol. You can find all that type of information in epilepsy manuals and pamphlets.
I wanted to share how it feels to be high-jacked by a disease. How it feels to be ambushed by a seizure. How the electrical terrorist shows up and ruins the best laid plans.
Why? Because YOU will feel these feelings, if you haven’t all ready. You will feel that epilepsy is an enemy attacking your child. You will feel hopeless and helpless. BUT you cannot share all these feelings with your child. The enemy is inside them. How would that feel? Your own little time-bomb inside you? No escape from it.
Even adults have trouble handling this mysterious disease. Children are not equipped to cope with such a complex problem as an enemy within. They cannot separate the disease from self.
I know this is heavy. Maybe you aren’t ready for this kind of raw honesty. When the smack down happens to you, if it happens, remember that Seizure Mama, Rose & Co. have been there before you and we are doing just fine now.
Rose went status at school and lived to tell the tale. Isn’t that every epilepsy parent’s nightmare?
You are not alone. We get it. Damn it!
Rose made it three years without a seizure. An EEG(electroencephalogram)was done. It was normal. She was weaned off of drug 3S during the summer. She grew taller, quicker, and smarter. We felt epilepsy was behind us. We believed the seizures were due to all those ear infections and fevers. Rose was growing and thriving. We were all relieved.
Rose started third grade without much worry. Everyone involved with her care knew her history. As a precaution, Rose’s medical information was shared with her new teacher. This young woman was very funny and enthusiastic. Rose’s classroom was near the office. Rose was happy.
We were all getting into our own grooves. Our lingering fear had loosened its hold on our family. I restarted my garden art business and began scheduling shows. My son was now in middle school leaving Rose at the elementary school without her big brother. No worries.
In mid- November, I had a two-day art show in a neighboring town about forty-five minutes from Rose’s school. Anytime I was away from Rose I wore a beeper and carried a bag phone. I can confidently say that her father and I, both at once, had not been this far from Rose since her diagnosis five years ago. Anytime I was away from her I wore a beeper and carried a bag phone.
The week of the show, Rose got another ear infection. She had hoped to go to her first sleepover at a friend’s house just across the road from our home. I was preparing for the show. Everyone was busy, too busy.
We kept Rose out of school on Thursday to recuperate and rest. She seemed to feel better. Friday morning was frantic. I gave Rose some over-the-counter NSAIDs(non-steroidal anti-inflammatory drug) and her antibiotics. I also sprayed her nose with a sinus spray as her ear specialist had recommended. We thought we had covered all the bases,but gut was still screaming. This was too much at once; the two-day show, the sleepover and especially being far from Rose.
My husband and I delivered our two children to their separate schools. Then we headed to the town of the art show in separate vehicles. He was to help me unload my heavy pieces into my booth and immediately return home. As we were unloading my garden art, my beeper went off. I looked at the tiny screen. It displayed the number of Rose’s school with a 911 at the end. This was our agreed-upon signal to drop everything and run. I am so thankful we had this signal in place. I explained to the artists in the booth beside me that we had a medical emergency. They assured me that they would pile my art under the table and cover it. We jumped into our truck and my husband drove as I called the school.
Our friend in the office answered the phone. He said “It’s Rose. Get here quick.” I explained that we were headed up the interstate, but were forty minutes away. Our hazard lights were on and I was waving a white sheet of paper in the windshield. Still some people refused to pull over into the right lane. At one point we passed in the grass and lost a hubcap. The beeper kept going off. The calls kept coming: “What hospital do we take her to?” “How far away are you now?”
My one question was ”Is she still breathing?”
Seizure Mama speaks to parents:
Let’s play a different version of the terrible game we parents play, “Second Guess Yourself.” Only this time let’s change it from ‘What if I had…’ to “What if I had NOT…?”
Examining the events described above, what if I had NOT…
- …let Rose’s teacher know that she had epilepsy.
- …set up an alert system including beeper and phone. (This occurred before cell phones.)
- …left an emergency bag in the office with emergency medications in it?
If I had chosen to hide Rose’s seizures to avoid the stigma, would she still be here?
THEN and NOW will be posted Sunday. It has been difficult revisiting these memories, but I must wring every scrap of wisdom from these events before I move on.
Chapter 12: Expecting and Accepting always brings up a toxic cocktail of emotions for me. I did not want to accept that side effects would be a hard to swallow pill adjoined to the medications. I still have trouble making peace with Rose’s losses. I wanted epilepsy gone, I wanted the side effects gone and I wanted my Rose restored to her full potential. Hurdles kept popping up due to her hearing loss, seizures and medications.
I wanted to be the bulldozer in her path, clearing the way for her to be the little super girl she was before. I was not going to give that up without a fight. But who does a mother do battle with when the enemy is inside her child?
I could have targeted her school, her doctors, her former friends. But what would be gained by adding an angry mother to Rose’s list of problems? So I plastered a smile on my face and ignored what I could. If I seemed normal maybe Rose would be accepted by proxy.
Fake it ’til you make it only gets one so far. Reality slaps sense into even the densest of us eventually. Rose was drowning and we were standing at the edge of the water cheering and expecting the butterfly stroke.
I must forgive this young, prideful, ambitious mother. I will shed the shame of unmet expectations and broken dreams. One must create a masterpiece with the materials at hand, not wait for better elements to work with.
Rose will be Rose with or without epilepsy. I must accept the reality of her life. I must accept the tolls this disease taken on her, her brother, her father and her mother. It is what it is. We will do our best with what we have. No blame. No shame. Moving forward with epilepsy in the side car so it cannot steer.
I must forgive myself for my ignorance and inexperience. I must forgive this disease for taking things from us all. I am going to kick angst to the curb and get on with my life as best I can.
Dear Another Mother, you need to do likewise.
Rose enjoyed her year in kindergarten. Her first grade teacher was a delightful, experienced woman. I was the volunteer Rainbow Reader for Rose’s classroom. I enjoyed my time in her room with the students. I went to her class each week and read books out loud to her class. There was always a lot to do in her classroom. The teachers in early grades were expected to assess each child individually. This meant that support was needed for those weeks as the teacher performed the one-on-one assessments with students. I was a certified teacher, so I understood this and was glad to help.
Rose was a good student and an advanced reader. I am not sure whether she was making progress during this year or succeeding due to former learning. We did notice that her hands were shaking when she tried to do certain fine motor activities. Her crayon coloring did not stay inside the lines. Her drawings were sloppier than they used to be. She also had some hearing difficulties. Her hearing was tested and accommodations were made. When some test results came home saying she had reading issues, I had her retested with the evaluator sitting on the side of her “good ear.” The second test results were improved.
Second grade got much more difficult. Because standardized state testing began in the third grade, the second grade teachers were expected to prepare their students for this upcoming year. Rose had a hard time keeping up. The math quizzes were timed. Missed problems were to be worked out and copied over at home. Missed spelling words were also sent home to study. Rose became very frustrated fast. The timer made her nervous. I was not sure she could hear the spelling words. Things were falling apart.
I did not realize how bad things had gotten until report cards came out. It wasn’t her grades that concerned me. It was her tardies. Every morning her brother and she were let out of the car at the same time. He would get to class on time, but she would be late. When I asked her about this, She explained that she stopped to get water, or peek into the library, or walk by her former classroom. In other words, she wandered around the school until the bell rang. This was not safe for her. It was also a sign of her dreading to go to her classroom.
I understood Rose’s frustration. We were struggling with all her “re-do” work at home. But as a former teacher, I knew the pressures Rose’s teacher faced in pushing her students. I remembered Rose’s neurologist warning the we may need to adjust our academic expectations. The drugs were slowing her down, but I did not want to accept this.
I was finally pushed to consult the teacher when my wise father asked me if he needed to make an appointment with Ms.C. I requested a much needed conference with Rose’s teacher. We worked together to augment Rose’s assignments to include shorter spelling lists, and more time for math quizzes. This was the first step in accepting that our academic expectations for Rose had to be altered. It was not fair to Rose to push and overwhelm her.
Seizure Mama speaks to parents:
Pay attention to everything. Is your child happy to go to school? Does he/she finish lunch? Does he/she talk about friends? What does your child do during recess?
So many times I was alerted to problems by some random comment. It is hard to catch every detail when you are busy and have other children. Pause often and try to picture what your child’s day is like. Listen for clues. I still do this when Rose calls home from college.
Then and Now #12 will be the last post for a bit. No worries. Message me or email me if you need me.
I have thought about this important year of our lives quite a bit. Rose got better and we all got braver. Little by little the fear loosened its hold on us. Everything got back to normal with the exception of the medication. The side effects seemed minimal.
We were blessed with a great year at school. It was wonderful to feel like both my children were in a good place. I had hours each day to think about my own future. The family balance was restored. We each had our own interests.
We toyed with the idea that maybe this epilepsy was really gone. That the seizures were just childhood developmental events. Rose was on level with her peers and healthy except for the ear infections.
I guess relishing all those good times makes the come-back-crashes more overwhelming. I have read what many epilepsy folks write on the internet. They lament that the seizures came back. Adults must give up driving for months or longer. It is a setback.
Those crashes just about broke Rose and me. We knew what they meant. The tether between us was restrung. The independence morphed back into dependence. It was hard not to resent each other. She felt we were too protective. I felt like I forfeited my freedom and career to save her. It was a difficult and challenging dance.
I do not mean that you should not enjoy every seizure-free second. I guess I wish the crashes had not been such a jolt to our psyche. I wonder if we could have been better prepared for the setbacks, so that we would not have felt a deep sense of mourning when the epilepsy resurfaced.
I wish someone had told us early on that we needed to fit our lives between the seizures, not put them on pause waiting for the seizures to leave her. It took us too long to figure out the damn things weren’t leaving. Maybe that is what I am trying to say to you. Get up and go on, epilepsy and all.
Here is the link to a poem I posted the day after Rose had her first seizure away at the university. It never gets easier. https://wordpress.com/post/seizuremamaandrose.org/556