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How do you do it? We (our family) doesn't have a choice.

Reminders of some disclaimers for #MyGlitch blog:

  1. The #MyGlitch blog became another avenue extended off #MyGlitch FB page which we began in March 2021. It is also a mental health outlet for myself. We were living in a new state, and I knew no one, at home by myself and had to medically retire in February in 2019, so we began this. (but in KY I had colleauges that would come visit or help out) I will continue to do things also on #MyGlitch FB page, alert you of blog posts and also just short posts of advocacy

  2. As I promised I will not go back and correct spelling or grammatical errors in any of my blog entries and or on #MyGlitch FB page. The reason is this is showing that my brain could of had a "Glitch" and simply thought I said/typed something but in reality, I thought it while the "Glitch happened and I went on not even knowing this happens.

  3. The goal of this blog is to be able to show others our family #MyGlitch journey, while also advocating for others that live with their own form of #Epilepsy (because each one is VERY different). It is also to educate while spreading #EpilepsyAwareness.

  4. Also, this page is my very own and everything I speak of is not of absolutes(and at times may only make sense in my brain LOL), and if I offend anyone (I apologize and please do not ever be afraid to reach out to me) I NEVER use names unless that person says I can.

  5. Thank you to those who reach out with questions and wanting to learn more. I truly enjoy building relationships from many different states.

  6. Lastly; a special SHOUT OUT who share my blog entries to help my family share our story while spreading #EpilepsyAwareness

OK, back to the heading TOPIC which seems to be what I have been asked a lot lately. So I wanted to touch on it just a bit.

First off when someone asks me "how do I do it?" I always correct them and say it is my entire family that lives with #MyGlitch...we do it together.

Sure I may endure the actual physical and mental pain along with the many various tests, consuming many medications, I can't drive anywhere(so stuck at home and dependent on others for a lot), the feeling of guilt if I miss something for our family because I had too many #MyGlitches that day and or have a #MyGlitch at an event, or didn't sleep much at all during the night(so I need to during the day for my body to have hopefully less #MyGlitches that day), not realizing I told my sons or hubby the same thing multiple times and get frustrated telling them they are wrong and I am right, the loss of a very memorable moment in our lives, the fear of not waking up one day an missing so much....I could go on but you get the picture. It is VERY draining physically and mentally.

Why do I say "we", because think of all the things I just listed off above. For instance; how would your son/daughter/husband/wife feel if you missed a special moment or just one day can no longer remember it, and they have to tell you over and over again what that was. My sons when they couldn't drive, just can't say hey mom can you run me here real quick to meet a friend or pick something up, running the store during the day running errands as easy as the grocery store. (all of this falls on Brent now or if I can find a ride) Sure I know you are thinking why just take public transportation, well where we live now they believe or not don't have it, and also taking a cab by myself would not be safe. Some cities/states do offer medical drive shares) They fear of my safety all of the time....because there is NO DAY OFF of not making sure I am ok in their eyes. Think of it as a parent of a young child learning to ride a bike the first time and you don't want them to get hurt, and an older child driving all by themselves, a child going off to college on their own, a child concerned of their parent in a nursing home if they are treated correctly. Me possibly falling down while alone, or walking outside and not even know I have. (now #MyGlitch used to not be this type, but has progressed over the years and I don't have the auras like I used to, where I got a warning of a possible #MyGlitch coming on and I would just sit or lay down) Just like I worry about missing or forgetting things about them, now that they are older, at times they are afraid to tell me something that possibly happened that could make me stress or worry more about them, because that to them could bring on more #MyGlitches that day.......again I could go on about more but I think you get the picture.

Also, this goes for our extended family as well. If Brent for instance can't take me to a Mayo Clinic appointment (my folks take me), when they were little and he would take me, they would drive/fly to wherever we lived at the time and take care of them. This also goes for all of our extended family helping out at one point or anoter, in some way.

We Fight #MyGlitch As A Family Positives

First off I believe it has brought us even closer as a family, and appreciate even more every moment we have together. My GOOD days we would take full advantage of and now Brent and I do that..as empty nesters(I still can't phathom we are lol).

Yes, it did make our sons probably mature faster vs possibly some other kids their age, but it also made them even better people. They are always very respectful to others(and us/family members as well)and say thank you because to them it is a treat.

They have empathy for anyone, even a stranger they might offer help if they feel he/she needs it. A simple example a student sitting by themselves, they would offer for them to sit with them. They are not embarrased as some kids might get over things or simply do not care what others say about them or even me.

They are overly driven in what their life goals are & and no one or anything will stop them.......some times I feel to the extreme. (That I blame on myself, because as Brent puts it, I pushed through some days I shouldn't of, so they think well if mom can do what she does and is in pain daily, I can do this.)

So you see in some ways I believe #MyGlitch has been a blessing to our family. Even if there are days, I will say there are hard beyond measure for me and I just cry it out or I know it is hard on them and we know we just need to give each other space, and when they were young Brent would help them understand what was going on. Plus now, since the boys are in college, the boys just have to tell me mom...stop sending me this, you already did...oh well...I forgot and moms just want to help their kids right anyways...I just might do it too many times in one day LOL. (So they have patience with me)

Just remember someone can always have it worse off.

Those families we lean and admire and pray for them. So please pray for all those living with something out of their control..such as a family member with a type of cancer, an invisible illness, a lost family member, lost jobs, lost homes from the hurricanes down here and more.

We Fight #MyGlitch As A Family

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Lisa Baker Dockus
Lisa Baker Dockus
2022年10月25日

Love reading your blogs and the fact that you put it all out there! You are helping probably a lot more people than you will ever know. Love you!

いいね!
Marissa DeVaul Parmer
Marissa DeVaul Parmer
2022年10月26日
返信先

Thank you Aunt Lisa! I appreciate you taking time to read them. It definitely took me a while to be able to share it to everyone, the honest truth of everything because obviously “I look normal”, unless you see me have a seizure. There are times as I said I still break down, as it isn’t always easy. This blog applies to you and Uncle Doug as you helped me be able to see grandma & PapPap, just shows again how extended family is just as important. It is truly a family affair when a family member as a Chronic illness. Love you all!!❤️💜❤️

いいね!

diana
2022年10月25日

Excellent post! I’m sharing it pronto! Love you all💜

いいね!
Marissa DeVaul Parmer
Marissa DeVaul Parmer
2022年10月26日
返信先

Thank you Diana for the continued support & sharing entries to Spread Epilepsy Awareness. Also, hopefully for those that have Epilepsy read these and not feel so alone. This blog also applied to you all, as you all treated Bryce during fall break, when Brent couldn’t miss work events. He truly enjoyed seeing his cousins. Just another example it takes a village having a family with a chronic illness such as Epilepsy. 💜❤️

いいね!
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