What Epilepsy Means to Me: Heather, Jacob’s Mom

Heather Kriegshauser wrote to me recently wanting to tell the story of Jacob.  I jumped at the chance to interview her and after exchanging a few brief emails I didn’t hear anything more from her.  Many of the people I am interviewing have been busy or dealing with seizures or were affected by Superstorm Sandy so I understand if plans change.   I certainly don’t want to put extra stress on anyone doing these interviews so I try not to nag.

But, hey, it’s me.

I’ve sent a few gentle reminders (I promise I was nice) about the interviews to people, completely understanding if they no longer had time (really).  Heather wrote back apologizing (there’s no need for apologies) and explained her son, Jacob, had been having breakthrough seizures.  Heather told me, “Ironically, epilepsy caused me to forget that it was Epilepsy Awareness Month!” 

That’s what it’s like with epilepsy.  Every day, every month, every year is about Epilepsy Awareness for those of us affected by epilepsy. 

I’m very grateful Heather contacted me and so grateful she wants to tell the story about her Jacob.  This family has endured more than their fair share of life’s challenges yet their love and laughter come through loud and clear in their story.

Robert’s Sister:  When was your loved one first diagnosed?  Tell us about the process of getting the diagnosis. 

Jacob - What an irresistible smile!

 

My son, Jacob, was diagnosed in 2010. He had his first seizure a few days after his 4^th birthday. In our area, there is only one pediatric neurologist, so it took a long time to get to see him. In the interim, Jacob began having seizures several times a week, sometimes several in a day. It was about 3 months from the first seizure to the actual diagnosis.

 

Robert’s Sister:  How did you feel when Jacob was first diagnosed with epilepsy?

 

My husband and I really had mixed emotions. Our daughter had been diagnosed with cancer when she was 3, and endured 2 ½ years of chemotherapy. At the time of Jacob’s first seizure, Grace had been off of chemo for a little over a year and was (and still is) doing beautifully. Our immediate fear was that Jacob might be following in his sister’s footsteps. So when the MRI was clear and the EEG pointed to epilepsy, we were relieved that it wasn’t cancer. Yet, we knew that this would be a long road for our little boy, and we felt a deep sadness for the journey to come.

 

Robert’s Sister:  Did your family treat Jacob differently after the diagnosis?  If so, how?

 

We definitely treated him differently. We became more protective and fearful. Our focus shifted from post-cancer respite to preventing seizures. Jacob was getting a lot more attention from the entire family, which was an ironic twist from often being overshadowed during his sister’s cancer treatment. As a mother, I did everything in my power to keep him as close to me as possible during Grace’s chemo. But it is just so unfortunately impossible to give equal attention to siblings when you are dealing with medical issues – something that Grace is experiencing now in this twist of fate. In some ways, I think that the extra attention given to Jacob now really helps him to feel special and important. In other ways, I think he feels micro-managed.

 

Robert’s Sister:  Did the kids at school treat Jacob differently because he had epilepsy? 

 

Jacob was not in school yet, so no. His peers were really too little to understand what was happening. Currently, he does have trouble socially as he was also diagnosed with PDD-NOS (autism spectrum disorder). We homeschool both of our kids, but they also attend a part-time cottage program through the school district in which they get to attend enrichment classes like art, music, and PE with other homeschooled children. Jacob has been very fortunate to have several kind and compassionate friends through our community and the cottage program. Still, he is teased a lot for being “different,” and the fatigue caused by seizures and medication is definitely an extra hurdle to his social interactions.

 

Robert’s Sister:  What treatments has Jacob tried?   What has worked?  What hasn’t worked? 

 

He has tried Depakote, Lamictal, Topamax, Trileptal and Keppra. The longest he’s gone seizure-free was 6 months, but then began having breakthrough seizures. Trileptal has worked the best for him with the least amount of side effects. However, he is now maxed out on Trileptal and the seizures have broken through. His neuro recently added a low dose of Keppra and he has so far been seizure free. The side effects were negative at first (aggression, sadness), but he seems to be tolerating it fairly well now. We pray it stays that way.

 

Robert’s Sister:  Do you think the medications affect how Jacob feels?

 

Absolutely.  They are tiring, they cause significant mood swings, and sometimes they cause a shakiness that is very frustrating for him and gives him trouble with writing.

 

Robert’s Sister:  Have you done any advocacy work (individually or with an organization)?  What made you want to be involved?

 

I have not, but I have so much appreciation and gratitude for the ones who have. Perhaps in the future . . .

 

Robert’s Sister:   How has epilepsy affected your life?

 

Honestly, it is really scary to watch your child have seizures and to be so helpless to do anything to stop them. It deeply hurts to see fear and pain in the eyes of your child. I’d do anything to take all of that from him. But treatment is so often a shot in the dark. And it can be a lonely feeling because so many people cannot relate to the situation. The balance between advocating for your child and accepting that you really have no control over the prognosis creates an inner turmoil that is tough to reckon with. BUT, epilepsy has also given me the opportunity to grow in so many ways. I have become more patient, tolerant, and compassionate. I have become stronger spiritually, and I have learned to see the gifts that accompany hardships.

 

Robert’s Sister:  What is your favorite memory of Jacob? 

 

Jacob is hilarious. His little 6-year-old sense of humor keeps us laughing, a lot. His favorite thing to do is make silly faces. He has this one face we call “the Big Eyes,” and the whole family cracks up every time he does it.

 

Robert’s Sister:  Do you ever wish Jacob didn’t have epilepsy?

 

Yes, I do. I wish he didn’t have to go through the pain, the fatigue, the fear, or the emotional roller coaster. And yet, in some ways I know that to take away the epilepsy would be taking away a part of who he is. I have no idea why his brain short circuits the way that it does, but I do know that his challenges, his idiosyncrasies and his gifts make him uniquely him – uniquely gifted and special.

 

Robert’s Sister:  What do you want people to know about epilepsy?

 

I want people to know just how much strength our loved ones with epilepsy have. Imagine what that must be like to be going about your day, and suddenly you are halted. You lose time. You lose control of your body. Sometimes you have warning, sometimes you don’t. Either way, I would imagine that you’d build up a fear of having a seizure – fear of trying new things or being around new people because you might just lose control at a time or place that feels unfamiliar, unsafe. Many people around you would react with compassion and empathy, but sadly, others would not and they might treat you differently or turn away from you because of their own fear and ignorance.

 

Epilepsy is misunderstood and all too often underscored. Treatment is challenging, sometimes painful and usually ambiguous. It takes a lot of strength to be constantly adapting and the resilience of those with epilepsy is truly amazing.

 

Robert’s Sister:  Is there anything else you want to say?

 

We are just so proud of Jacob and all that he overcomes from day to day. He teaches everyone around him how to see the world differently and he keeps us all smiling and laughing.

 

Note to Jacob if you ever read this interview: You are such a gift to us and we love you with everything we’ve got. Thanks for teaching us how to shine.

 

Robert’s Sister:  Please tell us how we can contact any organizations you support or if you have a website or business. 

 

I don’t have any of these, but my email address is savingmygrace@gmail.com.

 

Robert’s Sister:  Thank you, Heather, for sharing Jacob with us!  I think he's helped us all shine a little bit more now.  

 

Each day in November we will have a new story about someone affected by epilepsy telling us “What Epilepsy Means to Me.”  Check back tomorrow for our next story!  If you’re interested in telling your own story about epilepsy, please contact me at robertssister@att.net.