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Raising a Child With Epilepsy And 4 Tips For Dealing With The Stress

Finding Gratitude in a Pile of Shiitake-Mushrooms

Joy Comes Easy When Things Go Right. Your friend sends you a gift just to let you know she is thinking of you, seeing your child light up when you walk through the door, finding a 20 dollar bill on the ground, you realize the pumpkin spice latte is back on the Starbucks menu. When things go right, you don’t have to find joy and happiness anywhere, it just appears and it’s wonderful.

But when things go wrong, joy is nowhere to be found.  You find yourself raising a child with epilepsy, your child loses skills that took years to develop, she wakes up every morning screaming for over 45 minutes, the drugs you have to give her leave horrible side effects, and you blame yourself for not having a better solution. When things go wrong, and you lose all control, you feel defeated, sad, angry, annoyed and frustrated. When you put all your ducks in a row, and the ducks go ape sh!t the very last thing you feel, is joyful.

The First Day of School

Remy’s first day of school was on Thursday. The Sunday before the first day, Remy started a seizure cluster. By Wednesday, she had over 40 seizures. She was exhausted, sick and miserable.

Everyone else in the house was feeling the pain as well. We were all beyond tired, emotionally drained, stressed and just plain sad. Just like any other cluster, Zach and I took shifts in taking care of Remy while the other one took care of everything else the household needed. Since we cant make seizures stop, even with loads of seizure drugs, we just had to endure the pain of watching her suffer. I find that to be the hardest part of raising a child with epilepsy. Enduring the pain. After a few days of this, I started to feel broken down too.

Not only was this cluster exceptionally bad, with seizures lasting an average of  2 or 3 minutes long, it was also her first week of school, and if she didn’t get better, she was going to miss it.

Tuesday was the worst day. In between seizures, she laid in bed crying and holding her head while having intense migraines. Nothing was calming her down, and the side effects of the drugs didn’t help either.  I knew that with the level of pain she was displaying, the seizures were only going to get worse.

The Worst Seizure Lasted 7 MinutesShe started the seizure by screaming in terror and grabbing onto me as if I could save her from the demons that appeared to be chasing her in her head. Since the seizure activates this paranoia and terror response, there was nothing I could do to reassure her that everything was ok. The seizure quickly turned into a tonic-clonic or grand mal because she became stiff, shaking and not able to breathe on her own.  After three minutes of giving her oxygen and watching the timer, I knew I needed to end the seizure. I gave her the only tool in my tool belt, rectal valium. If I didn’t do this, her seizure could have spun so out of control, that no one would be able to stop it without hospital staff and medical intervention.  Luckily the diastat did its job because after 7 minutes, the seizures stopped and Remy fell asleep.

With my heart pounding and adrenaline racing, I laid in bed next to Remy trying to catch my breath as she slept off the horrible seizure. When the adrenaline wore off, all I could feel was devastation and defeat.

My daughter is broken.

She is going to miss her first official day at school and who knows how much longer these seizures are going to last.

The Making of an Anxiety Attack

Those thoughts were just the first of many to follow that took me from feeling just a little stressed and worried, to feeling panic and agony from raising a child with epilepsy.

I laid there with the deep-seated terror that sits right beneath the surface of my thoughts. “What if one-day we can’t stop a seizure? How much school is Remy going to miss this year? What will this seizure cluster do to her development? How could God let this happen to this sweet child? What did either one of us do to deserve this kind of torture? What if Remy never grows out of seizures? What if she gets a seizure and hits her head on the ground and gets a concussion? What if Remy drowns in a pool? What if people make fun of her because she is different? What if I’m not cut out for raising a child with epilepsy? If Zach and I die, who is going to take care of her? What if a seizure takes her life?

The week prior was so full of excitement and anticipation of Remy starting school. I imagined making a cute little chalkboard sign and taking school pictures while Remy wore her adorable first day of school dress. I imagined seeing her get on the bus and seeing her friend Maddi that she has missed for the last month. I imagined waking her up for school and telling her about her big day and seeing the huge smile on her face. But now that Remy was going through this horrible seizure cluster, All that hope had gone away leaving me feeling alone and completely unraveled. Instead of just being concerned about this one seizure or one cluster,

I Worried About the Rest of Remy’s Life

The worry came flooding in my mind so fast; I couldn’t control the speed or level of graphic images that were playing out in my head. The fear was building momentum, and I found myself being sucked into a tornado of negativity that made me emotionally paralyzed. While all those thoughts are reasonable concerns, worrying about them was serving no useful purpose except for filling me with anxiety. I knew it was time to shift my focus to something more constructive so that I didn’t get completely swept up in agony.

Here is How I Turned it all Around

  1. List the Facts

I had to lay out the facts. Purely the facts without inserting emotion or my interpretation on what those facts meant.

  • Remy was having seizures
  • Remy was going to miss her first day of school
  • The cluster wasn’t going to last forever
  • She would get to go to school when the cluster ended.

That was helpful because when I took the emotion out of the situation, it made it bearable. Instead of going through the list of 8000 reasons why this sucked, my list turned into four things. That was a much easier pill to swallow and a little easier to bare.

  1. Have Compassion For Yourself

The second helpful tool I used, was to be compassionate, to myself.

I needed to give myself a break. Part of my grief came from feeling totally helpless and weak. Since we have gotten through hundreds of clusters before, I felt like I should be stronger emotionally and not let this type of situation get to me.

I needed to give myself permission to be sad and admit that this situation does really suck.

I love my daughter, and clusters are freaking hard. For her and me. How could this type of week not affect me? It is not only ok to feel sad, but its important honor my feelings.

When I acknowledged my feelings, the pain lifted. It also allowed me to be in a state of surrender and acceptance which are essential in finding inner peace.

  1. Practice Having Gratitude

When I shifted my focus from grief to gratitude, I was able to find joy and a sense of well-being which is what I prefer any day.

  • Remy was still alive
  • I had my health to be able to care for her
  • None of the seizures landed her in the hospital
  • All of the seizures in this cluster happened in a safe environment, and she wasn’t injured
  • Even though she will have missed her first day of school, she had an excellent school to go to when she got better.
  • I knew that “This too shall pass.”

My entire emotional state and energy shifted. I was now overwhelmed with love and hope that wasn’t present before. I felt a renewed sense of drive. By leaning into my feelings, I acknowledged that although seizures suck, I am strong and brave enough to survive them. If Remy can do it, so can I.

By shifting my perspective, the sadness, anger, misery, and worry were able to pass through me much quicker than if I stayed in a state of resistance.

  1. Appreciate How Far You Have Come.

Three years prior, when seizures first started, those negative feelings would stay with me for months, and now they only last for a few minutes. That’s progress.

In Life, we cannot avoid pain, hurt or disappointment. Pain is inevitable. What we can do though, is grow through our pain and give ourselves time to feel what we feel. Sometimes strength comes naturally to us, but other times, strength comes from having a significant amount of intention. When you stay in a state of resistance for too long, blessings aren’t able to show themselves, and you get an obscured sense of reality, which makes you suffer. If you can look at the progress you have made, and see what you have already survived through, you realize that just like any other time or situation in your life, this too shall pass.

Sunshine After the Storm

Remy had one more full day of seizures after that, and then they were all done, yay! She did miss the first week of school, so she had her own first day without even realizing she had missed out on anything.

We don’t always get to control what we want, but when we bring acceptance and surrender to every situation, we can see the beauty in the life that we have.

I wish that Remy didn’t go through what she goes through, But since I am raising a child with epilepsy, I am grateful to be stronger because of it. That is a blessing that’s worth something.

Helpful Strategies that I Used

  • List the facts of the situation and only the facts.
  • Give yourself compassion and allow yourself to grieve without worrying about the ‘what ifs’
  • Make a gratitude list.
  • Appreciate how far you have come.

I would love to hear what makes you thankful when you find yourself in a pile of shiitake mushrooms. Leave a comment below and share your thoughts.

Live well,
Jody Warshawsky

  • Zach Warshawsky

    Jody, I am very grateful for you and grateful for our little girl Remy and all the joy she brings to our lives! Thank you for sharing our story here! Very proud of you for doing this and excited at the opportunity you’ve taken to help others from our journey with Remy!

    • Jody Williams Warshawsky

      Thank you so much Zach. I am grateful for you too.

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