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Rose got strong by falling down
and getting back up by herself.

I have said it is her SUPERPOWER

Rose got very sick several times at college
She walked to the infirmary by herself.
She got medications and went home to rest and recover by herself.

Rose had a seizure at work, gashed her head open, got staples at the ER, missed a week of work and went back to work by herself.

Rose ran over a boulder in the dark on a mountain road and drove home by herself.
Rose’s car was totaled. She had it towed away and got a replacement rental car.

Rose got help when she needed help. No one was hovering in the wings waiting to rush out and save her. We were three hours away.

Rose took care of herself by herself. She had to. She needed to be stronger than the strongest healthy woman.

Rose had a stroke in her dormroom and crawled across the floor and beat on the bathroom door with her unparalyzed arm until her suitemate heard her and called an ambulance.

She did homework and emailed her professors from ICU. She went back to school a week later. Weak but determined to graduate on time.

Rose had heart surgery right after graduation to close the hole in her heart. She watched on a screen as the surgeon closed the hole. That is who she is!

THEN SHE CAME BACK HOME TO LIVE WITH HER  PARENTS.

She has spent TWO YEARS transitioning onto a new medication combination that failed and then back to the old medication combination that worked better, but not completely.

Now we are waiting until she can drive in April. Then what? She still has epilepsy.

IS SHE STILL STRONG? MAYBE.

We do not know for sure because she doesn’t have to be. Enabling is involved. Slackness is tolerated. There are no consequences. We are here to do for her what she does not do for herself.

SHE NEEDS TO BE BY HERSELF TO BE STRONG.

DO NOT ROB YOUR SPECIAL CHILD OF THEIR SUPERPOWER!

S T O P       N O W

Right now!

Mama

I really wish we were not in the midst of another conundrum. Our path has never been simple nor straight forward. Many disasters we prepared for never happened. We have been blessed with some miracles. There has been and will always be extra uncertainty where Rose is concerned.

I was reminded of the very beginning of our journey today by a message of a parent that is on the line between febrile seizures and official epilepsy. They are not sure whether to hang back and hope for only a febrile seizure diagnosis or take the plunge into the dreaded diagnosis.

I told them to message an address and I would mail them a book. Now, I question the wisdom of that offer. Maybe they are ready for the first few chapters of Seizure Mama and Rose by Flower Roberts, but they might need to stop at the big E diagnosis.

I asked myself, would I have wanted to know the rest of the story twenty-eight years ago? There is some wisdom in the biblical term, a light at your feet. I do not think I could have handled the foretelling of all that would follow.

We took many challenges as they unfolded. We had faith that a treatment would come along to save Rose, or atleast stop the worst seizures. We needed that faith. It helped us get through terrible surprises that emerged.

So here we are, decades later, on the cusp between faith in drugs and the risk of a seizure that will most likely come at some point. Wanting her to be as free as possible.

Her dad and I are older now. We are tired. There has been enabling and spoiling that is difficult to correct. Rose is still hoping for independence. Everybody needs that to happen.

She may be allowed to drive in April. Then what? An instant job and apartment? Sudden interest in cooking and cleaning? This could all fall apart with one drop.

Do these anxious parents really want to see through our looking glass?  Part of me says yes. Rose is still alive. She is a college graduate. She has a great sense of humor. She has only broken one bone in all those seizures. All that is positive.

She is still at home in a room I have dubbed, The Rose Museum, because things go in and never come out. We suspect she needs physical objects associated with memories. No change has been made in there. I do not allow myself to enter.

If that looking glass pans over to see her weary parents and worried brother, they may wish they had not seen the effects it has taken on her caregivers. We call it, The Toll.

I question my role as a advocate for parents when we have not reached the finish line. Maybe I need to be a model for acceptance. I am not sure I am capable of that.

I told myself that folks needed company on their journey, not a leader. I can commiserate. I can empathize.  I can quietly listen. I have no wisdom for them to learn from. I still feel as uncertain and scared as I did in the beginning.

There I said it!

I am sorry if that is not what you wanted or needed. That is where I am, decades into this.

Seizure Mama

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Rose has months to go before she will be cleared for driving. She feels a bit trapped due to her dependence on others to drive her places.

Now that packages are arriving for Christmas, I have given Rose the task of driving to the mailbox to get them.

Our driveway is a winding, gravel, single track through the woods. This is good practice. She drives to the gate and must do a three-point road turn to head back home. These trips are her tiny taste of freedom.

It’s a win:win. She likes the job and I don’t have to stop what I am doing to retrieve boxes.

Mama Flow

We are continuing to transition down on Xcopri, which is Rose’s latest medication failure. She reached a level toxic to her.

Another change we are making is to spread out her dosage of Keppra ER from once per day to twice. She has done the Keppra change while we wait for the new Xcopri pills to get processed at the pharmacy.

We did not expect the spreading out of the same dosage to cause symptoms, but she has felt off for several days.

This proves the wisdom of the rule, only one change at a time. If we had changed two drugs at once, we would not be sure of the cause of her symptoms. We may have blamed her malaise on the Xcopri change.
It’s best to be careful and scientific with all changes in medication.

Rose continues to be seizure-free and has more energy. This is great since we have trips and visits planned in the coming weeks.

As we all travel and socialize over the holidays, I would like to advise scheduled  periodic rest breaks, double checking times and doses of medications and NO red dye in foods.
We have had epilepsy as part of our Christmases for 30 years now. Better to be safe than sorry.

Happy Holidays

Seizure Mama

Rose’s dad and I have been parenting two children for almost 35 years. We have mostly agreed on the proper way to parent Rose’s older brother. We do not see eye-to-eye when parenting Rose.

Rose’s dad is very protective of her. Not just because of her epilepsy, but because she is female. I want Rose to be a strong woman regardless of her condition. I do not want her babied and enabled. She needs to carry her own weight, seizures and all. Our family has to pause and discuss this over and over.

This past weekend we went on a trip. When it came time to clean up and pack, Rose retreated to her room. I had to insist that she help in preparations for our leaving instead of “staying out of the way” while we did all the work.

I am tired of feeling like the bad guy because I refuse to let her be slack and not do her share. Who will pull her weight when her dad and I are too old or sick to do it. I do not intend to leave a spoiled slacker to the care of her brother. We have created this problem and we need to fix it.

If Rose can do cooking and cleaning then she should do these chores. She needs to be as independent as possible. She needs to get in the habit of taking care of herself and her surroundings.

Her dad and I are not getting any younger. I am frustrated by our different expectations of her responsibilities, especially since I am the person who is with her most of the time.

She is a Daddy’s Girl. He is much kinder than I am. I am usually too tired to be sweet.Thirty two years of almost constant parenting has left me weary.

I hope this new drug combo keeps improving Rose’s seizure control and energy level. It will be a relief when she can drive again.

Bad, Tired Seizure Mama

I know any change in medication is scary, but sometimes the unknown is better than the certain which includes seizures and side effects.

Rose is more active, more talkative and has dropped 40 pounds with no new activities other than spending more time out of bed.

She has gone down two steps of Xcopri and gone up two steps of Onfi.

No seizures.

I almost ended that sentence with “yet.” We have some habits to break.

Be strong. You are all ready brave as hell.

SEIZURE MAMA/ FLOWER ROBERTS

Rose will go down on Xcopri and add Onfi back in with Keppra.
Yes folks, this seems backwards, but anywhere is better than where she is now, lethargic, shaky and confused.
She moves from bed to couch to bed.
Today,  we both lay on my bed and listened to the Wicked soundtrack.

We had to delay this latest change… again…due to generic drug instead of brand name Onfi.
What’s a few days out of 32 years.

We play the long game…Rose and I.

I will let you know how it goes.
I never wanted to blog her story in real-time, but here we are.

Seizure Mama and Rose

The mystery of epilepsy and celiac disease 

We went up on Xcopri. Now, Rose’s legs give out. She fell up some steps last week. She has no energy.

Messages through the portal have been answered by the devoted nurse. Nothing is working. We now have both seizures and side effects. Rose cannot be left alone.

We have requested to return to EMU…again to titrate down more quickly and move on to a new drug. She also needs an at-home sleep study.

I just cannot be upbeat anymore. She graduated from college in December 2022 and has not been stable and energetic enough to look for work.

Too bad Rose can’t work for Miss Kitty at the Long Branch Saloon..That is where she spends her afternoons.

Seizure Mama as Debbie Downer