Epilepsy Blog Relay November Post: Creativity & Epilepsy: Poem

This post is part of the Epilepsy Blog Relay™ which will run from November 1 to November 30, 2017. Follow along!

I wish that the seizures would just stop and go away,

They always wreak their havoc whenever she's trying to play.

They make their grand debut in any manner that they please,

Resulting in a watch and wait scenario that causes all to freeze.

When the random jolts and movements have finally come to an end,

We sit and stare and process all that occured trying to comprehend.

Why do they keep occuring? How is this even right? 

It doesn't matter what we do, we seem to keep on losing this futile fight.

As parents we do what we think is best and throw everything we've got,

Medications, surgeries, alternative attempts, anything to give our kids a shot.

Some relief might be temporary but it never lasts long enough,

Thankfully our kids are resilient, brave, and extremely tough.

One day there might come a time when these events will no longer occur,

Unfortunately waiting any more time for this to happen is not something we parents prefer.

In the meantime we will keep on trying to do our very best

to put up with these episodes and continue on our epilepsy halting quest.

NEXT UP: Be sure to check out the next post tomorrow by David Monnerat at www.epilepsydad.com. For the full schedule of bloggers visit Living Well With Epilepsy Blog Relay.

TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.

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Creativity and Epilepsy: Educating Children Who Witness Seizures

This post is part of the Epilepsy Blog Relay™ which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

Seeing a seizure no matter how many times they occur and no matter the age of the bystander, can be extremely traumatic depending on the type of seizure a person may be experiencing.  It is a delicate situation to tend to the person who is experiencing the epileptic event as well as comfort those who are witnessing everything unfold, especially when there are children involved.  As a parent, when you have a child with epilepsy who has young siblings you have to be very creative in how you handle all things related to seizures.  This includes conversations regarding seizures as well as when/if it comes to watching the episodes themselves.  

Being that Sonya began having seizures within one month of her life, they were less noticeable to others, however, Sonya is 5 years, 3.5 years, and 21 months younger than her older siblings, which means they were extremely young the first time they were exposed to seeing a seizure.  At the beginning they honestly did not notice one was occurring, but eventually as the seizures got longer and more intense, her siblings became more aware.  As parents, Sam and I did not want to scare our older children, but it was important they be aware of what a seizure looked like so if necessary they could inform us if they saw it occurring first.  For example, Sonya's car seat faced our then 5-year-olds and so while driving she would occasionally tell us "Sonzee is having a seizure".  There have been false reports, however, more often than not, the reporting is accurate and a huge help in beginning to comfort Sonya, both verbally, and for her sister who sits right beside her, physically.

There have been times when the seizures are just too overwhelming for us to want our older children to be around, regardless of how helpful they can be, and so we have to be creative in how we distract them.  Sonya went through a time when she required oxygen during the end of her seizures and for some time following the episode.  When she would begin her seizure typically another person (unless we were alone) would go and grab her oxygen and begin too hook it up to her.  For the majority of the time we were able to distract our older children by having them go and play in another room or go have a dance party, but once or twice our oldest would stop in her tracks and look at us placing the oxygen cannula on Sonya and ask if she was going to be alright.  We could tell she was scared and so we explained that Sonya was having a seizure and it was alright, but that sometimes extra air is needed to help people breathe.

Children in general can "make light" of many situations, and this includes seizures.  They can see someone making funny, weird, awkward, dramatic, and fast movements with their bodies and can think this is something to imitate.  At a young age it was extremely important for us to emphasize to our children that seizures are never anything to be made fun of and what is occurring to a person who having one is not pleasant, is not funny, is not weird, is not comfortable, and is by no means a joke.  It is also extremely important to balance sharing this information with young children in a manner that does not scare them, but does emphasize this is a high magnitude situation that should never involve laughing.

While Sam nor I are perfect in the ways we have chosen to be creative with our older children in regards to educating them on seizures, here are some ways we found helpful with our older children and their exposure to epilepsy.  We are not expressing that every parent should follow these ideas nor is every parent going to want their child to see a seizure, however in a lot of family situations it is simply impossible to prevent a child from witnessing a seizure, so it is always better to be as prepared as possible.

1. Talk and explain to a child who is watching the seizure what is happening to the person experiencing a seizure-reassure them that even though it looks extremely scary the person is going to be alright
2. Answer questions that a child may ask regarding watching the seizure
3. In general keep the lines of communication open between the child watching the seizure and the adult supervising
4. Be aware of the child who is watching a person have a seizure-are they are uncomfortable? are they scared? do they need to be distracted?
5. If another adult is present have them take other children in another room in a calm manner asking them to show them where an item is, or to go read a book, or have a dance party
6. Have older children help time a seizure or feel like they are helping you or the person having a seizure
7. The priority is on the person seizing, however, if seizures are routine and the person is stable, make sure to remain calm (always good regardless) and try not to scare the other children who are around

NEXT UP: Be sure to check out the next post tomorrow by Sarah Collard at livingwellwithepilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

Don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.

Mommy bloggers, Join me @ Top Mommy Blogs

Creativity and Epilepsy

This post is part of Epilepsy Blog Relay™ which will run from March 1 through March 31.  Follow along and add comments to posts that inspire you!

It wasn't until approximately a month after Sonya was officially diagnosed with epilepsy that I started to blog about the experience.  I created Sonya's Story while sitting at my oldest daughter's dance class while texting my best friend, about two hours after she was diagnosed with CDKL5.  At the beginning of this journey the only way I was able to get my thoughts straight was to put them in writing, and honestly, some days, it is still the only way.  However, two years into this journey and many lessons later, I have learned there are at least three creative ways to help you live with a child or family member who is diagnosed with epilepsy.

Make jokes.  I have found that laughter and making a (morbid) joke here and there (or all the time) are necessary to make it through the day or sometimes the hours.  There is a lot of heartache that comes along with having a child who suffers from genetically caused epilepsy and serious discussions and situations can be made (significantly) lighter with a quick joke.  I will admit that not everyone appreciates my humor in regards to Sonya, but I have made it through some very dark times because of it.

Find an outlet.  Whether it is playing a sport, writing, photography, arts and crafts, or juggling, find something that helps you get through the days.  Having to care for a child or family member with epilepsy is extremely taxing on a person.  It takes a lot to help manage the care of a person 24/7, ensuring medications are prepared and taken at scheduled times, making sure the environment is safe because there are not always warnings that a seizure is coming, these are only snipets of the responsibilities of a caregiver to a person who has epilepsy.  It is vital for the purpose of sanity to ensure that a proper outlet is in place to help make this experience a little easier for you.

Personal story cards.  When Sonya was two and a half months old I used a template from the CDKL5 website to create her very first business cards.  I handed them out to help raise awareness and to give insight on what exactly CDKL5 is.  After the creation of Sonya's Story as a non-profit, I revamped the cards and still continue to hand them out weekly.  I find these cards invaluable and use them in a variety of situations.

These are the most common situations I have found myself handing out the cards:
1. When a stranger is staring and it is clear that they are curious but unsure of whether I want to talk about Sonya's differences

2. When a person makes a rude or snide comment, and it is obvious they are unaware of the entire situation

3. When someone asks about Sonya.

4. I admit I have not done the following, but it is on my bucket list.  Take one of these cards and place it with a lovely note on the windshielf of a car inproperly AND illegally parked in a handicapped spot or on the yellow lines.
**(I am unsure if this will make a difference to these types of people, however, it will keep me out of jail)




Take advantage of respite.  If your child's epilepsy diagnosis is secondary, and he/she qualifies for respite services, I cannot emphasize enough how important it is to take advantage.  If you can have a friend or family member trained in providing these services, this will eliminate an additional stress.  It is so important to take time to spend with your spouse, other children, and on your own.  It is how you can help yourself to be as healthy as possible in order to give your child or family member the best care possible.

There are so many other creative ways to help you live with a child or family member who has epilepsy.  I hope you will find some of these (if not all) to be useful to your situation.


Next up:  Be sure to check out the next post tomorrow at livingwellwithepilepsy.com.  For the full schedule of bloggers visit livingwellwithepilepsy.com.  And don't miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.

Mommy bloggers, Join me @ Top Mommy Blogs