living with epilepsy
I’ve contemplated what to write here for 15 minutes. Sometimes, you just don’t have anything to say. Silence is one of my favorite things. Sitting and listening to nothing but the breeze brings about a sense of peace and balance.
This was a busy month for us. First Mom’s birthday, then Valentine’s and then Emmalee’s birthday. It makes for a fun week.
This month also brought our first review for the Homeschool Review Crew. The curriculum we receive through them is always a blessing.
Several other reviews happened this month as well. I’m happy we are again in a place where I can provide those for our readers. We enjoy our reviews.
Emma has started diving into her own business of bracelets. You’ll see more about those soon. They will eventually be for sale. This has been a long time goal of hers. Art has her heart, and jewelry design does as well.
This month, I realized I had lost my camera charger somewhere on our travels. I was able to get a new one and look forward to working on imagery again. I mean, what was the purpose of my time in college if I’m not going to put it to use right?!
I started a book this month. You’ll see more to come on that soon as well. It’s a hard thing for me to announce and I’m almost fearful of it’s release but it’s been long in coming.
The kids are good. Our family is good. Life is good.
Until next time…
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.
This post is part of the Epilepsy Blog Relay™ which will run from . Follow along and add comments to posts that inspire you!
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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Then there are days when we have meltdowns, Mom and Dad included. There are days when we feel like we can’t do this anymore or are we sure we even want to do this??? Wouldn’t it be easier just to put your kid on a bus and let the Public School handle all of these issues and challenges we face daily?
Giving up would be the easiest route. Letting someone else take control while we sit back and enjoy the few peaceful hours that we don’t have to handle all these things. Only then the phone rings asking us to come in because our child has had a meltdown and punched Johnny. Or Emmalee has a migraine and needs to come home (yes this has actually happened to us). So in the end, we’re still having to handle all the things we started with.
Challenges happen every day in life. Some challenges are huge and some much smaller. Some seem huge when they aren’t at all. But all challenges teach us some important lesson in life though we may not realize it until much later.
Each challenge presents a different result and needs a different way to be handled so I cannot tell you exactly how to handle the challenges presented to you personally but I can tell you what I do to overcome the many challenges I face in my days.
Pray. Prayer always starts how I handle my day to day challenges. Sometimes it’s a quick prayer: “Father, please make this happen.” “Father, please allow things to go smoothly today.” Sometimes it’s a more in depth prayer that lasts through out my day. But no matter, prayer is always the best way to deal with my challenges.
Then I evaluate what’s going on. The baby is crying and whining all day. Does he need a nap? Diaper changed? Sensory overload? Should we cuddle or is touch too much for him as well? (Sometimes he cannot stand to be held and other times he craves it and doesn’t realize that’s just what he needs.)
Why is Laycie extra whiny today? Does she need an extra snack because she’s growing? Did she even eat with her medication this morning? Perhaps she needs some down time. Maybe the task is too hard for her to complete yet.
All these things are challenges that I must determine and answer. Sometimes the answer is easy. Sometimes it takes a lot of effort to figure out. Deduction and evaluation of my children is one way I handle our daily challenges and let me tell you, no one knows your children better than you do!
Then there are challenges of cleaning, teaching, keeping up with the Jones. Well, first thing I did was throw out the competition with the neighbors, exes and other homeschool families. This is my family and we have to compete with no one. We do things on our time, in the way that best fits us and that’s perfectly fine. Sure I occasionally find myself falling back to the old way of society says but then I stop and remind myself that society is not important. God and His plan for my family is most important to me.
Cleaning: this is managed by setting schedules which sometimes do fall to the wayside. There are many great apps and programs to help you stay on track. That one Lady has been a lifesaver to me at times and I’m fixing to get back to that myself. You have to find what works best for you, be it motivation programs, or things that list the job task to task.
Teaching: When life is in chaos, this becomes another challenge. I’ve suggested some ways to deal with teaching when you are facing these challenges in my previous posts for this blog hop. Make things easy on yourself. Teach curriculum that allows you to educate more than one child at a time. Use materials that simplify instead of over exert you. Teach your child educational independence too, so they can do the work on their own and learn with minimal input from you. Educators outside of Elementary to High School age don’t hold our hands. We’re expected to do it all on our own with little input from them. It’s okay to let your child do the same if they are able. It’s actually a skill they’ll use throughout their lifetime.
Organize: I have a hard time with this myself but when everything is in it’s place, it really does help our lives run smoother. Keep your curriculum in the same place every day so it’s easier for you to access. This will make you want to teach and make learning easier for your children. Same with the rest of the house. When your children can find their clothing, they can get out the door for appointments faster. When your kitchen is organized, cooking is more efficient. You also have more time for family time and bonding with each other.
When challenges become too much, take time to reevaluate your home and life. Take time off from school to relax and just be together as a family. Go camping, or just to the park. Change the pace. Take a look at what small things you can do to make things flow better for your home and life and then make those changes.
Challenges face all of us. They aren’t the end of the world, though sometimes they surely feel that way. Challenges just require us taking time to figure them out in order to overcome them. Once we do, things fall into place again until the next challenge comes along and then you start the process all over again.
Remember with Christ you can do anything!
P.S. This is the final post in the 5 Days of Homeschooling with Epilepsy and Other Issues series. We hope you have been blessed by our thoughts on these topics and have enjoyed this glimpse into our life. Please take a look at our other posts it the series and may God bless you in your journey as He has us in our own.
Homeschooling for us varies throughout the year. Because our schedule is usually crazy with appointments at different times of the day, we have had to learn to adapt things to fit around this. We homeschool year round, which means when the public school kids are at home, we’re usually still having school.
We’re also pretty eclectic educationally which fits right in with the Homeschool Review Crew since we never know ahead which vendors we will be selected to review and which we won’t. We’ve been blessed to be selected for many wonderful items over the years while being a part of the crew and these items have easily been adapted to fit our homeschooling because of our personal style.
We also tend to use materials that allow us to work together as a family instead of individually which can take a ton of time. Things like Apologia for science, unit studies by Amanda Bennett, Apologia for Biblical Studies and Story of the World for history have helped us to have a well-rounded educational experience while allowing us to adapt to the challenges our health issues present.
Unit studies have been a huge blessing because it allows us to often work through subjects of interest instead of following a more formal plan. Many field trips end out our studies to give that hands-on experience my children crave. This is just a fun bonus for all of us.
As you’ve probably guessed, we don’t follow a strict schedule. I feel that learning is most important, not meeting a timeline that my children may not necessarily be ready for. I enjoy watching their little faces when they truly learn something that speaks loudly to their hearts. This is the method we’ve used for years and greatly enjoy following.
This is just a small glimpse into our homeschooling life. We hope you’ve enjoyed it and look forward to sharing more with you! Next up is Homeschooling On The Down Days.
the Homeschool Review Crew!