Epilepsy is F*in’ Hard: Part 1

A few months back, I wrote an entry about my daughter having a seizure. Of course it was a scary event but I cannot tell you how naive we were. Our lives have been turned upside down since that day and

I actually started that above paragraph on December 7th, 2019, and had to stop writing because my daughter said to me that she wasn’t feeling well. I have learned to listen to her even if I think she is crying wolf. She was not. That was the start of 16 days in the hospital, 15 of which were in the Level IV Epilepsy Monitoring Unit here at Children’s Memorial Hermann.

When my daughter first had a seizure, her doctor was quick to dismiss it as a one-time thing. When my daughter had her second seizure 13 days later, she was hospitalized. We spent 3 days at a children’s hospital in Houston and were put on Keppra and told to follow up. We had a 3 month honeymoon period and then our daughter’s seizures returned. We maxed out Keppra. They added in Onfi. Insurance refused to cover Onfi. She started clustering and Status Epilepticus became a real concern.

Sitting in my daughter’s hospital room, I became angry because other than “she has Epilepsy” we didn’t know fuck-all about this situation we found ourselves in.

I joined a Facebook group for parents who have epileptic children and I quickly realized that the odds were not stacked in our favor. If I was going to walk this path with my girl, it was obvious that I would have to first clear the path for her. *Rolls up sleeves* Not a problem, I am her mother, this is what I must do for her. BUT if I am going to do this I am going to at least document it so that way when another parent has to walk this same path they can use this as a starting point. As always at UnSocially Acceptable- my goal is to help with my story. No one should feel alone in this world- especially when you are worried about your child’s life. One of the hardest parts to swallow about an Epilepsy diagnosis, once diagnosed with Epilepsy, that may be the only bit of information you get.

I posted in the Facebook group asking parents what they wish they had known about Epilepsy and as one parent pointed out, I fell into a Rabbit Hole. So this is going to be the first entry in a blog series, Epilepsy is F*in’ Hard. I don’t want this entry to be very long that people find it cumbersome. So I will work on other entries and try to group them by topic, for things such as medicine, CBD, Epilepsy-related products, Epilepsy-related resources, and other miscellaneous Rabbit Hole topics.

To start, the overwhelming response was that no child is the same as the next. You KNOW your child (which is true, I have accurately predicted my daughter’s seizures every time). Follow your intuition, your “momtuition” is almost never wrong and even if it is, this is the one time it is wonderful to be wrong.

Stemming off of that thought, it is okay to call your Neurologist or Epileptologist after hours, there is no need to justify your concerns about your child to anyone else- if you are worried about your child- your concerns are valid. End of story.

Ask questions, doctors are people too. People no matter the amount of education or years of practice in an area can make mistakes. That is why the term “practice” is used, medicine is still a developing field and things change daily. They are human, you are human, human error exists. ASK QUESTIONS.

Educate yourself on all things Epilepsy because you can’t ask questions if you don’t have a baseline on the topic. I started with this book and it really helped: Navigating Life with Epilepsy by David C. Spencer, MD, FAAN. This book will really help you understand terminology and the different types of seizures, medications, treatments, and so much more. This is my bible.

SUDEP is a fear we all have. There will be no shortage of companies tying to capitalize on your real fear of SUDEP, sorting out the bullshit from the needed is hard. I plan to write an entry of common products and companies to trust.

Medication: this is a touchy subject. These medications are literally changing the chemistry of your child’s brain. There are side effects and some of them are major. You have the right to question the medication. You have the right to ask your child’s doctor if this medication is the best available option. You are your child’s advocate.

Not to sound bleak but there is a real possibility that a medication will fail your child. This is frustrating. I am sorry. Keppra failed my daughter. BTW, I choose to say it that the medication failed my daughter rather than my daughter failed the medication because I don’t ever want my daughter to think that Epilepsy is her fault.

Cannabidiol or CBD is helpful for a lot of a families. My family uses Green Compass Global and it was approved by her Neuro team and her Epileptologist. We use a full spectrum CBD in concert with her Antiepileptics. This is the company that I own a franchise with and the only company I trust (read previous blogs where I talk about this company). There are no shortage of opinions of CBD in the Epilepsy world and there are some great products but again, I trust my company. The only FDA approved prescription for CBD is Epidiolex. Many families have seen great changes and help with just over the counter CBD but that is a discussion for you and your doctors.

I will likely do another blog entry on CBD and epilepsy as those who read this blog know how strongly I believe in cannabis.

Genetic testing and updating genetic testing is important, it can really help narrow the field and help your child’s doctors decided on a treatment plan. Some insurance will cover it and some insurance won’t but I, personally, think genetic testing is worth it. Keep in mind, getting the results takes a long time. It is not like television labs that can return the results to the detective before the next commercial break.

There will be a lot of waiting. Waiting on the genetic testing. Waiting for appointments. Waiting for insurance to cover or approve something. Waiting on the new medication to pass or fail your child. Waiting to titrate up to the next dosage and wondering how “protected” your child is. Waiting on the next seizure…

Parents, PTSD is real.

I tried to explain this to my friends and family and they just don’t get it (but they will). Epilepsy is hard. I was so ignorant to the struggles one goes through when Epilepsy enters their lives. For something so common, HOW DOES THE WORLD NOT KNOW ABOUT EPILEPSY?

I can tell you that I am not okay... and that is okay. Each time I hear my child say my name, it no longer sparks joy in my heart because, more often than not, my name is the last thing she says before she has a Tonic-Clonic Seizure. I am the person she calls out to for help. I have 4 seconds to get to her from the time she says my name to the time the seizure changes from focal to generalized. Now… the sound of my own name sparks fear and worry- my heart drops every time she says my name. The guilt I feel and the emotions I go through every day breaks me. I am not the person I was 5 months ago… I am not the person I was 2 months ago. I feel angry. I feel like Epilepsy robbed me of the joy of being a mother. I struggle to find balance between taking care of my child/managing her safety and actually being a parent to her. I cry a lot. I am distracted. I feel broken.

But NONE OF THIS is my daughter’s fault and what I feel is a drop in the bucket to what is going on with my sweet girl who doesn’t understand what is happening to her. She is so lonely and depressed and it breaks my heart. Her life has changed so much and so fast. Like many children who have Epilepsy, my daughter is cognitively delayed. Which, sparks more anger in me, because I find myself wondering “why her?” a lot. And, when you start down that path of thought- you will find a lot of emotions.

I will never have a good night’s rest for the remainder of my life. My child will never be cured of Epilepsy- she will only ever be “Seizure Free” and that timeline starts over every time she has a seizure. She once went 3 months…

Parents this is very tough road and not many people will understand what you are going through. Your friends and family will not understand that your child NEEDS their medication at the same time every day or that you have to randomly cancel plans because you have this feeling in your gut that won’t go away… It is important to remember that like myself, the world just doesn’t know because it hasn’t happened to them but if you find it in your heart to be vulnerable about this- people may listen and more people may see that this is something we need to discuss and know more about. At the very minimum, Seizure First Aid is something that must be taught.

I am documenting my daughter’s struggle with Epilepsy not to capitalize on it but because I immediately realized that the world is just not prepared for Epilepsy. My daughter has to live in a world that is not meant for her- a world that is not safe for her. I am going to do everything in my power to let the world know she exists and that there are many others like her that exist too.

God willing, there may be a day when she calls out my name and someone else is closer to her than I am… maybe they will be brave enough to help her.

Supermom

I have something Dark within me.

I try my best to ignore the Darkness. I tell the Darkness it has no place in my life and I remind myself of all the light I have within me. Most days that is enough to keep the Darkness from enveloping my soul.

I have battled this Darkness for 20 years and right now my resolve is wavering.

A few years ago, I made a promise to myself that I would no longer fight this battle in silence and I started writing about it and posting it to my social media. To this day, I have kept that promise.

You see, I feel that when I publicly address my depression, I give my depression no room to hide. I force my depression out into the light where it has to answer for itself. I take away it’s power over me.

So, unlike most everyone else with a mental illness, I battle mine out loud.

One by-product of battling out loud is that I am frequently called things like “brave” or “Supermom” for choosing to speak when so many remain quiet. However, I really don’t like it. I don’t feel brave or like Supermom and I am doing this for my own selfish reasons.

I am not brave.

I am scared that the Darkness is right about me.

I am scared that I belong in the Darkness.

That I deserve the Darkness.

I am coming up on the 1 year anniversary of my life turning to shit, starting with my health, then a few hard financial blows, then my daughter developing a seizure disorder, followed up by some more hard financial blows. Currently, I am writing this from my office wrapped up in a big blanket, hot tea to the left of me as I am sick with pneumonia. What next?!

But as I sit here, and try to divine what to say, I struggle.

I am drawn to the Darkness.

I feel the pull of the void, but I won’t answer.

The Darkness grows restless inside me.

This “Supermom” feels like she is locked in a room of Kryptonite.

This false warrior is not brave at all.

My composure and my delicate grasp on my depression are falling apart. I feel like I am broken in a 100 different ways but I haven’t shattered yet… but the slightest bit of pressure will cause a collapse…

I have openly talked about my use of cannabis/CBD to treat my auto-immune disease as well as my anxiety. I definitely believe in the healing powers of cannabis. However, in this case, I waiver. I am not sure if I can get myself out of this on my own (like I have done in the past) and I don’t think there will be enough CBD to help either.

While at the doctor for my pneumonia check up, my doctor brought up that I had gained weight and that my smile didn’t touch my eyes. I told her about my life stressors and she brought up going back on Wellbutrin, an antidepressant I am very familiar with.

I accepted the prescription but I have not filled it.

Filling it would be me admitting to myself that I am not okay…

Like I am now…

I am not okay.

I have always said that I am my own worst enemy and admitting that I am not alright to you is one thing, admitting that to myself is entirely different.

I need to give myself the Grace I would give others but I am not there yet.

Friend, I see you.

First, thank you all for reading my blog. I wanted to create a space where I can openly talk about the “hard” things in life and I am working very hard to create that space.

I was inspired to write this entry by one friend in particular and when I decided to write this post- I guess it made me more aware of other friends, and even myself that have also fallen victim to these thoughts.

I hope you see that I am coming from a place of love and want nothing but the best.

Dear Friend,

I know you feel invisible but I wanted you to know that I see you. I see the hard work you put in each and every day because you are me- we are the same.

Each morning, you rise from bed, exhausted. I bet you are wondering if you might steal a quick moment for rest some time in your very busy day before your feet hit the ground.

I bet by the time you pour that first cup of coffee you have abandoned your plan for a moment’s rest in lieu of just going to bed earlier.

We both know that’s not going to happen.

You get the kids ready, it’s difficult because one can’t find their shoes and the other still wont get out of bed. They will just have to buy lunch today- you need to remember to add money to their accounts.

You’re stressed – because you have a meeting with your boss today, who is very much single and childless and therefore not sympathetic. Maybe they will give that promotion you deserve to Jenkins because she’s hungry-af.

Your husband, who has been sleeping gets up, get’s ready for work, grabs breakfast and coffee to go, kisses you on the cheek, hollers goodbye to the kids and is out the door.

Must be nice.

You drop the kid’s off at school, only to realize that child #2 forgot their lunch. You circle back only to run right into Ms. Schwarz, who makes you feel like shit for not every being able to volunteer as classroom mom.

You get to work, late. Jenkin’s eager-ass is already in the meeting and she had time to get donuts, and not just any donut- she stopped and got some bougie donuts that are so insta-worthy you could die.

Fucking. Jenkins.

Friend, I see you.

You finish the meeting, go about your work day which is a non-plus. You then sit in traffic on the way home to pick up the kids. Dinner is going to be a challenge because your husband said he would stop on the way home but now he has to work late and you didn’t have time to grocery shop this weekend.

Nonetheless you manage to find something that the kids will all eat.

Bath time.

Did the oldest have a project due?

Is homework done?

Wait, did I just hear my work email go off on my phone?

Your husband gets home. He’s had a hard day and isn’t very talkative- he complains that the house is messy and goes off to play Xbox with his friends who are waiting on him to join them.

It’s now 9pm and you go take a shower and silently cry.

You cry because you are so tired.

You cry because you are afraid you are a bad mother.

You cry because your husband doesn’t help.

You cry because you work your ass off at work, are entirely capable, and that promotion that should be yours went to Jenkins.

You cry because you feel like a failure.

You cry because you think you are alone in this, that no one else is as bad at this as you are.

Friend, I see you.

I AM YOU.

You are not a failure.

YOU are not a failure

YOU ARE NOT A FAILURE!

Friend, I see you .

I see the caring, wonderful woman that you are.

I see a person who puts the needs of their family above their own.

I see a person who works so hard to do such a good job at work to be able to be that second stream of income for their family.

I see you push your dreams aside for the development of your husband’s and children’s dreams.

Friend, I believe in you and I want you to know that you are not a failure.

I wish you could see your position in the world the way that I see it.

I wish that you could forgive yourself and let go of that fucking mommy guilt.

You are doing the best you that you can and your “best” is good enough.

You are good enough.

Please, please, please know that.

Friend, what I want you to understand is that it is okay to have a messy house, it is okay to not volunteer for the class mom bullshit, it is okay to let Jenkins get that promotion (you and I both know she will fuck it up anyway).

The failure you feel, is self-imposed. I know it is hard to hear, it was hard for me too. Remove the pressure you put on yourself. Quit focusing on the moments in the day where your feel like a failure and look at the moments when you were so clearly crushing it.

Examples: You helped your daughter with her with homework- did you know that she has struggled to learn that topic until you sat down with her? That is a win.

Or what about your ability to MacGyver the shit out of dinner- did you know that your kitchen skills are inspiring your son to be a chef?

Mommy guilt is a self-imposed prison.

Friend, I see you…

Can you see me?