One of the things I love is coming to my blog and seeing which of my posts are popular. Most of them are our Epilepsy posts. When I began blogging, I didn’t intend to write about that aspect of our lives but I wanted others to not feel so alone in this journey that we’ve lived with now for generations.
I’m lucky. I have generations of family who’ve had Epilepsy, who I can relate with. Not everyone has that. Most of the families I’m in contact with daily don’t have anyone they know that has Epilepsy and they often have no knowledge of Epilepsy itself.
Now it’s not lucky that we’ve had to deal with seizures for generations on generations. This is a mean disorder that holds no kindness to it’s victims. But I have history to compare to, especially for myself and my children. I know what I’ve lived with. I know what they’ve lived with and how it affects each of us.
I have 3 children with Epilepsy. I’ve been to every appointment with them on this. I’ve asked questions, had medications changed and adjusted, address dietary issues, made thorough notes about each type of seizure we all have. I’ve taken on this part of parenting willingly because if I didn’t, who was going to? But more than that, God equipped me to do this. He knew when He chose me I could do it, even when I questioned.
I’ve been through the ups and downs of this disorder as a Mother. I’ve explained as much as I can to my children when they ask why this happens to them or why they need medications, or why they need an MRI or an EEG, why we have to stay at the hospital this week. This is our life. This is what we do. Epilepsy isn’t a choice but it is our life.
When you’re feeling down about Epilepsy, remember to look up, to pray, to allow yourself peace and grace as a parent. Don’t beat yourself up. There’s nothing we can do to change the fact we have this disorder, nothing we can do to change it. We accept it and move on to help our children deal with their days better.
It’s been a while since I posted about Epilepsy. It’s something I try to ignore some days but it’s always there. When I least expect it, it will rear it’s ugly head and remind me it’s still here lurking in the sidelines. And then I remember there are others like us who also deal with this. I pray our blog helps you to deal with the day to day and know you are not alone.
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My oldest, thankfully, does not have Epilepsy, though he does have struggles of his own. He’s allergic to penicyllin and mold. He struggles educationally. He has sensory issues.
My second born, my daughter, was the first of my children to have Epilepsy. She was 3 months old when she had her first seizure, 2 weeks following her vaccine series. She continued to have tonic clonic, absence and complex partial seizures until she was 5. At five she stopped having seizures and began having migraines instead. At 14, she’s been seizure free for 9 years though she still has migraines occasionally.
My third child, my second daughter, began having seizures at 4 months, 2 weeks after having her vaccine series as well. She also has tonic clonic, absence and complex partial episodes. She is now 9 and has not outgrown her seizures. As the years pass, our hope becomes less that she will outgrow them. She has yearly EEG’s which show nothing and she’s on Lamictal currently after having allergies to everything we tried in the past. She is mildly delayed due to an allergic reaction to Trileptal when she was an infant.
My fourth child, my youngest son, has a different condition. He official diagnoses is Involuntary Breath Holding Spells that trigger Epileptic Seizure. Involuntary Breath Holding is a common childhood disorder which becomes dangerous when seizures that follow last longer than the average 30 seconds to 2 minutes. For my son, the seizures last anywhere from 10-20 minutes. 20 minutes is the longest we’ve allowed them to go without stopping them with emergency diastat medication.
Epilepsy brings many challenges in life. I went from being the person that seizes, to being the person who watches their child seize. Our family is rare in that we have 5 known directly descending generations with Epilepsy beginning with my great-grandfather down to my children. My children are the first generation since my grandfather’s generation to have multiple siblings with Epilepsy.
Being a person who has seizures is hard. Being a Mother of children who have seizures is harder. I do not know what our days will bring as Epilepsy is not a predictable disorder. Even though my oldest is not currently having seizures, it does not mean she never will again. It’s a disorder we are always watching for, looking for even the smallest of events that may be a heads up for a larger event.
I don’t wish our life on anyone and yet I know our life could be worse. I’ve been lucky in that we’ve never had more than one of my children (or myself) seize on the same day. I call us blessed because I know this could be worse. I see it in the Neurologist office and in my Epilepsy groups online every day.
I began blogging in 2009 and I wasn’t sure what this blog would be about. It didn’t take long for me to find my purpose here though. Sharing our life and our story about Epilepsy, our day to day challenges, things we go through in an effort to helps others who, like us, struggle to understand and live with this disorder.
When I began blogging there were not many Epilepsy Mom bloggers. I can understand why. This isn’t an easy thing to share. When our families are seizing, then we’d just rather it go away and we’d rather pretend we’re normal and it doesn’t exist. But the truth is, it does exist. It doesn’t go away. It’s always there, even when it’s not active.
There’s always the fear. The fear that the day will end with a seizure or the morning will begin with one. The fear that a seizure will happen in their sleep and you’ll wake to find them not breathing the next morning. The fear that you’ll have a day full of too much excitement that leads to a week of seizures that are unstoppable. The fear of Status Epilepticus and SUDEP. The fear never goes away.
And you never forget. You never forget how your child or your loved one looks laying lifeless and out of control. You never forget the feeling of helplessness you as a parent feels. You never forget the confusion a seizure creates. And you definitely never forget the thankfulness you feel when your child or your loved on wakes up and comes around from the seizure’s effects.
Epilepsy life is hard. It’s not a life any of us would choose but it’s one that we are forced to live every day. We deal with the not knowing, finding hope and strength in whatever we can to get through it. The Epilepsy community is a tight nit one because we each understand the challenges and triumphs of living with Epilepsy.
Epilepsy is our life and you can read more about it and how we deal with our day to day through the many other Epilepsy posts we have shared on our blog. I promise there will be many more posts to come as we continue to share and work towards helping others understand what living with Epilepsy is like. I hope our blog encourages you to share your own Epilepsy story with others. Advocacy and Education for Epilepsy is one of the best things we can do for ourselves and our families.
May each of you be blessed,
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