Eddie and the Ender Dragon: How children deal when a parent has epilepsy

posted in: TDEF Blog | 4

July 12, 2020

Eddie and his LEGO® Minecraft™ Ender Dragon

One thing that has happened in my life that I was told would not be possible is becoming a mother. Having my sons Edward and Anthony has been the greatest accomplishment in my life.

Even though I have not had a seizure in years, the side effects of my medication are clearly visible to my family. Anxiety, depression, PTSD, cognitive impairment, insomnia, are just a few examples of the complications that come along with epilepsy. At times I can deal with my challenges, at times I can easily become angry and overwhelmed from the side effects of my meds. My sons have never seen me have a seizure, but they can clearly see that I face many challenges that the average person does not.

I realize as a parent and advocate that I cannot shield my children from this; they realize their mother has a challenge and must take steps to remain healthy and be able to function. This past year, I have gone to therapy to deal with a trauma I should have addressed years ago. Even though I have not told my sons the trauma I am facing now, they have clearly seen the changes in me as I have gone through my weekly sessions. As much as parents who are battling chronic illnesses do not want their children to be affected by it, the truth is we cannot avoid it. Instead of shielding our children from our challenges, we must learn to embrace our challenges and show our children how we face them in a positive way.

One evening I was working in my office and my son Eddie brought in his toy Lego ender dragon from Minecraft. Minecraft is one of the boys’ favorite games to play. I cannot play with them because the game gives me migraines. There are a lot of things that the boys want me to take part in and due to epilepsy, I am limited to what I can do. Eddie was describing the Ender Dragon to me and said, “Mama, she breathes purple fire and can protect you from your epilepsy.” When I asked him how he replied, “Epilepsy is purple, Mama, and she can protect you with the purple fire.”

Hearing my son say this touched my heart knowing in his way, he is looking out for me. I am proud as a parent that my children are finding ways to acknowledge and face what they see me go through. Rather than hide my condition, I accept the fact that it is here and not going away. While it is difficult to deal with epilepsy when having children, when your children become of an appropriate age, teach them about helping others battling chronic illnesses like you and give back to those in need. Love yourself, love your community, and together, we will defeat epilepsy.

Natalie Boehm

President, The Defeating Epilepsy Foundation

4 Responses

  1. Teress Sczesniak

    Beautiful story….Natalie I’m so proud of you. You have succeeded in so many area’s of your life…wife, mom, writer, President of The Defeating Epilepsy Foundation. You make me proud and you are a beautiful example to Eddie & Anthony. I love all you have become and so much more to come! Love. Aunt Teresa

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