A day in the life

>> Tuesday, April 13, 2010

I once wrote about the ugliness that is administering rectal Diastat. How much fun was that? Today, I think I will elaborate about actually living under the spectre of Epilepsy.

I say under because in a lot of ways, and in a lot of places, Epilepsy is looked down on. People with Epilepsy are thought of as second class citizens and treated as outcasts. Many people harbor the misguided idea that because a person has Epilepsy then they MUST be deficient in capacity or odd in some way. While Bug has other problems, his Epilepsy does not make him lacking in intelligence. Even his OWN Neuro thought his lack of speech was related to his seizures. This is, most likely, NOT the case. He may have a brain stem issue that may be causing the speech problem and the seizures, but in no way can the Epilepsy be considered the CAUSE only a symptom.

When a child is diagnosed as having Epilepsy, it is advised that quite a few daily tasks be modified to prevent the person from injury. There is a list of SHOULD NOT's that I think you might find interesting:

A child with Epilepsy SHOULD NOT

  • Go swimming alone. ALWAYS make sure that someone who is aware of your Epilepsy goes swimming with you. ALWAYS wear a life jacket.

  • Ride a bike - With a helmet you ask? Nope, it is SUGGESTED that children do not ride a bike at all. Imagine riding your bike on the side of the road and then finding yourself in the middle of the road because of a seizure? Again, ALWAYS have someone with you.

  • Bathe without someone nearby - Yep, the bathtub and shower are dangerous places to have a seizure. Been there, seen that first hand.

  • Jump on a bed or trampoline - The hell you say? Yep, bad idea even with someone around. The fall from a trampoline or bed, above ground or not, can break legs, arms and necks if the person is unable to control their fall in any way.

  • Play on playground equipment - this should be limited to shorter equipment and a person must ALWAYS be present.


That is a small list. I won't even mention Skateboarding, skiing or any other sport where momentum is a factor to fun. Helmets should always be worn when any physical activity is being done and, get this: The rule is that if your feet leave the ground, you should avoid doing it.

Sucks all the fun out of childhood doesn't it? If you let it, it does. But if you are parent of a child with Epilepsy, you make EVERY day count.

It can take years of having seizures to begin to recognize the signals of an impending event. Even then, there are not always indicators that a seizure is about to occur. This is why these precautions are so important.

Do WE follow all of them? Yep. We do. Bug is never alone for very long. We do let him jump on a trampoline, small one or one with a net around it but even then, I am a nervous wreck. I do NOT tell the people, with whom he is playing, to be careful or mindful of him simply because of the possibility of a seizure. I mention to them that he can not communicate and we are not sure if he can understand at all, that's it. I don't want them to be frightened of seeing a seizure, because I have seen Mothers take their children home after I explain about his Epilepsy. Am I imagining it? I wish.

Everyday, in every way, his play and his actions are evaluated for safety. Can you now imagine watching your child even climbing the stairs and having to be concerned? Most people can't. Most people shouldn't.

If you have witnessed a seizure, you know how concerning it is, if you haven't...it can not be described. I could try, but it is one of those things you have to experience.

When Bug was having seizures more during the day, any trip out could turn into a learning experience for the people that happened to be there.

A few years ago, we took the kids to the IHOP. They love going there. Bug was playing with the people next to us. They were laughing and smiling and trying to get him to talk. I explained that he didn't and they commented on his beauty. They smiled back and forth, he played peek a boo and we all ate. At the end of the meal, Bug locked up and went into full Tonic Clonic Seizure. They didn't see it, they just saw Glenn taking him out to the car. I gathered Tay and paid the bill. The nice people were left to wonder why we left so suddenly. I saw them watching us leave with puzzled looks on their faces. I waved and they waved back. Bug was in seizure for 3 minutes. Our day was done. We took him home and he slept for 4 hours. It is what it is and people with Epilepsy live everyday like this.

The key is to make people more comfortable with Epilepsy so that daily activities aren't a guessing game. So we aren't afraid of how people will respond if he has an event. Bug is lucky, in a sense, he is so pretty that people are comfortable around him. They are concerned for his well-being because he is easy to fall in love with on first sight. I think they are more willing to accept his Epilepsy and his Autism because of it. People really are more interested in perception than substance. They perceive his beauty as no threat, his epilepsy is therefore, easier to accept. In more than few people, he has helped them see what Epilepsy is NOT and he has helped them embrace it as a medical diagnosis and not something to be feared. And he has done this without words. Simply by being himself. And himself is lovely.

2 comments:

mcarey71 April 19, 2010 at 12:01 PM  

Annette,
Reading this makes me so sad. Sad for Bug, sad for you. I can't imagine how hard it is to deal with his Epilepsy and know that there isn't anything you can do to stop the seizures. But then on top of it to have to deal with others preconceived ideas and fears. You are amazingly strong to deal with all of this on a daily basis. Somehow though, I get the feeling you're reaction to that would be.."Of course I deal with it, what else am I supposed to do?!" I'm so glad Bug is YOUR child...I'm sure that makes a huge difference in HIS life! :-)

Nett April 19, 2010 at 2:09 PM  

Oh hey Mon, I didn't want to make you sad. Hugs to you. We are a happy lot, I piss and moan about Doctors and lack of satisfaction and all but really we love where we are in life overall. We have a great family dynamic and we play whenever we can. I was trying to let people see the things they take for granted are very special to a child with Epilepsy. I love that you think of him and I can't wait for you to meet him! Thanks for all your support! Big kisses!

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What a Seizure looks like (Graphic Content Included)

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Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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