When you are the one living with Epilepsy, but your child is healthy…how do you cope?

“Children make you want to start life over.” Muhammad Ali

For me, that wasn’t possible in 2005 when our daughter, Hayden, was born. I was already more than two years into this crazy journey called Epilepsy, and my husband, the person you could call my ‘main’ caregiver, and I had made the conscious decision to have a child.

We were incredibly and undeniably blessed. She was happy, healthy…and simply gorgeous, if I may gloat. From the beginning, she was a perfect eater and sleeper;  her personality and looks were both a fine mix between me and Andrew. For those first couple of years, I honestly didn’t really even notice that I was the one with the illness and she was the healthy one. Or at least I convinced myself not to notice.

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Now that she’s 4, in school five days-a-week, gymnastics, swimming, little miss social with her various playdates, and as active as a monkey who’s consumed three cups of coffee, I’m beginning to feel that sense of guilt. Is my illness bringing her down?

This can’t just be felt by Moms and Dads with Epilepsy. I have to be sure that there are others who have been struck with all kinds of diseases who tend to feel this way. I can’t drive, so I feel miserable when I can’t take her to her friend’s house for a quick playdate. If I’m having a ‘bad day’ with a few episodes, I might have to lie down for a few hours, and my mood is everything but pleasant, so I think she is suffering. The side effects from the anti-seizure drugs sometimes make me moody, tired, short and not exactly a happy Mom to be around.

Still, she is my very best friend (toddler fits and all), and I am incredibly proud that she is as resiliant as she is. This is the child that has seen her mother endure five brain surgeries. Not many children at 3-years-old can watch her parent have a grand mal seizure and then talk her grandmother through (on the cell phone) what is happening, blow-by-blow. She has learned what ‘boo-boos in the brain are and why Mommy has them’. I’ve had family and friends advise me not to expose her to the difficult health issues in my life, ‘it might scar her and scare her’. But to me, shielding her from this part of my life…our life, wasn’t an option.

After all, we made the decision to bring her into our life and there certainly was no way to magically change my health situation, so the best approach for us…make her a part of it.

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December 18, 2011 at 3:18 pm

{ 5 comments… read them below or add one }

Jeff Nelson January 3, 2010 at 12:33 pm

Good Lord, don’t feel guilty! I highly doubt epilepsy is bringing anything in your daughter’s life down regardless of how it may feel. Although you were able to bring her into life, I truely believe parents are given the children that are a perfect fit for them. I agree that toddlers shouldn’t be exposed to complex health situations they can not yet comprehend. However, I’m sure you have found great ways to give her the information she needs as she needs it. As time goes on, despite any guilt you may feel for missing a playdate here or there, she will definately come to understand your situation to a higher degree. If anything, I think she would grow with a better awareness and compassion for those who are disabled, and achieve a greater ability to tackle some of the harder issues that life tends to throw at even those who ‘are’ able to do what we are not. Being as you have been through so much, I think that as your daughter gets older, she will be way ahead of her time in wisdom and mental maturity. The greatest teacher’s never come from easy places. I like how you call having E a journey. It definitly is! I’m always learning more about who I am. But, don’t ever feel guilty! The best thing a parent can give their child is love, and it looks like your daughter will have all she needs.

Louise A. January 5, 2010 at 8:38 am

Every mother has something that may land their kids on the psychiatry couch later in life!!! She is going to come away with the experience of living with her mom as a special person who has gifts others do not have and she has her own personality which is very separate from you which is developing, no matter what you say or do! You have to believe that all children have something to deal with in life that makes them different from others. There is no such thing as a perfect childhood, except for what Jeff N just said, and that is being loved.

Monica LM January 8, 2010 at 2:10 pm

I am going trough exactly the same thing. We also made the decision to bring our beautiful, healthy children into this world but having to pass this responsibility to our children has always been in my thoughts. The time has come when we’ve had to seriously talk to our son about his role/responsibilities in case mami gets a seizure. It was so hard to do and the guilt is horrible. I pray that I don’t scar them or have them resent me in the future for all I’m putting my family through.

Tracey Alderson January 13, 2010 at 2:29 pm

I Can Understand; Here’s My Story:

This topic is so complex, where do I begin. I could start by telling you this only happens to other people, but that would be an outright lie. Statistics show there is an estimated 1 in 100 people, over 320,000 Canadians living with Epilepsy. And 1 in 10 of us will experience some type of seizure in our lifetime. Epilepsy is a seizure disorder; simply put it refers to a non-contagious medical condition whereby a person has seizures that, may or may not be able to be controlled by medication, & that may or may not have a known cause for the condition. The severity of ones condition can vary dramatically due to the fact there are over 40 types of seizures.

At 4 years of age I witnessed my very first seizure. Or at least it’s the first one so vivid in my memory I can picture it as if it happened yesterday. My stepfather had Epilepsy. He battled with various types of seizures, including tonic clonic (grand mal) seizures, up until committing suicide when I was 12. I’ll never know exactly how my stepdad felt, trying to function normally in a world that still to this day struggles to understand & accept this disorder. But because I too now have Epilepsy it has given me a lot more insight & understanding into what my stepdad may have endured. It’s been over 14 years since my first seizure. I started having seizures when I was 29 years old and little did I know at that time just how devastating of a battle I was in for. Imagine waking up thinking it’s going to be just another day. I went from getting ready for work one morning to running in a sudden panic into the bedroom where my husband, Steve, was sleeping. I remember hitting him to wake him and my last conscious thought being, “why am I hitting him so hard”. EVEN THOUGH STEVE HAD HIS CPR & FIRST AID TRAINING HE STILL FELT OUT OF CONTROL THAT MORNING. STEVE HAD NEVER SEEN A SEIZURE BEFORE AND I HAD NO PRIOR HISTORY OF ANY ILLNESS.

I remember my first few seizures feeling pretty horrific. No one knew yet what was causing my body to act this way. Medication wasn’t controlling the seizures. And it took several months before specialists pinpointed the origin of the seizures. Accounting it to a small leision, deep, in the right front side of the brain. I was now diagnosed with Epilepsy (a seizure disorder). And due to several circumstances surrounding my seizures, I would likely never gain total control of my seizures. But I continued to battle, experimenting with different medications, trying to find a compromise. Something that my body could tolerate with minimal side effects & still help me obtain some quality of life. I remember thinking, at the time, there must be some mistake. I knew what a seizure was, I saw my stepdad take lots of them. But somehow when it’s you, it takes a while to fully absorb what’s happening. I’ve had a lot of mixed emotions over the years. Accepting doesn’t exactly happen overnight.

In the first few years I would drop at any time of day, taking a partial complex seizure followed by a tonic clonic (grand mal) seizure. I felt so inferior & scared most of the time. I struggled with depression, and there were very few people I trusted, but at the same time, I hated being alone. I lost my job, my licence for awhile, some friends, but most of all I was losing myself. The struggles within continued. I wanted so desperately to be able to function normally again; and my body wasn’t letting me. The added strain I was putting on my family when I wasn’t feeling well was enormous. I had no control & I began to feel I was failing as a mom, a wife, & an overall human being. The anger & frustration I felt was heightened by the unpredictability; I never knew when a storm was coming. My seizures would strike at any time with little or no warning.

Since about 1999, my seizures have been nocturnal. It was this change that allowed me to gradually take back some of my independence & self confidence which I had lost. Thankfully, as the years are passing, my seizures seem to be easing a little in intensity; but I will never underestimate the power they hold. If I were to describe Epilepsy as a type of person I would say “it’s a very powerful manipulator & a controller, it keeps you where it wants you to be”.

As unpleasant as it is, more & more people (of all ages) develop seizure disorders every year. And the best defence against seizures, is the knowledge of knowing how to deal with one should it happen. So for reliable, up-to-date information please be sure to contact your local Epilepsy Organization.

**I understand your feelings of guilt, but you can’t blame yourself. My family has been through a lot too. It’s taken pain, tears, and a lot of worry over the years but we keep pulling through. (It seems if you’re not stressed over health issues, then it’s finances, or when the kids were younger – there was always something else). Now our 3 kids are grown, and we even managed to survive the teen years. Which in our house was almost worse than my Epilepsy at times. Thankfully we are a close family once again. Now we have a daughter-in-law too, and we’re grandparents twice at 41 & 44. And I’m really hoping to enjoy lots of time with my kids kids. Espescially since I feel like I missed out on so much when my own kids were younger. This feels like my second chance!

Thanks for Listening & Take Care,

Tracey Alderson,
Administrator, Epilepsy Awareness 2009
For personal questions or comments, please send emails “in confidence” directly to me at epilepsyhppresident@hotmail.com

Alysse January 15, 2010 at 6:35 am

Thank you for sharing your story…seems we all have such interesting backgrounds!! Please, keep checking the blog and let’s keep in touch! All the best, Alysse

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