Support For the Journey!

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

A few years ago, I made a decision with the support of my family that I was going to start a blog where I was going to share from my view as a mother and caregiver my family’s journey with Epilepsy through my eyes, in my own words…holding nothing back!

I took a hiatus from writing  so when I was asked to be apart of this blog relay it brought some apprehension, how do you go back to something you quietly walked away from?

Since coming back home from a doctor appointment today, I have tried hard to find the “right words to say!” I put the opening header needed and the closer that was needed and I walked away going over in my head what was written  and all I could see was the words Epilepsy Awareness…what is awareness?  raising people’s knowledge,  their perception of a situation or a fact in this particular situation it has to do with Epilepsy.

How can I do that? I took a hiatus because for so long I just couldn’t find the words to say… to describe life for my family… to talk about my son’s journey! Have you ever lived through a time in life where it just had to be lived  out at that present time and then later you could reflect upon it well sometimes life with Epilepsy  is just that . It is more than words can describe it is a journey that has to be lived daily and to its fullest and as it comes!

Helping the world know that this journey with Epilepsy isn’t always easy that this journey doesn’t always have words to describe it!

Recently I had  a discussion with my son who said ” Mom no one knows life has been different for me since I was diagnosed with Epilepsy”  In which I returned ” That is very true, we will never know how it has felt for you, but one thing I do know is that WE have been with you every step of the way and the moment life changed FOR YOU, LIFE CHANGED FOR US!” he looked at me and said ” But no one knows how it feels to have a seizure, how it feels to not be able to do something, how it feels to be stuck in a doctors office all day; how you have to take all the medications, how you have to remember all these questions they ask. How you have to be strong even when you don’t feel like it and all these other things, and how people are always asking you are you okay!”  I sat and nodded and said “Okay and looked and said “hmm, that’s a lot for you to deal with!”  I then went on to respond ” Very true we do not know how it feels to have a seizure, but we know how it feels to watch you have a one and be helpless! We do know how it feels to not be able to able to do something, but we know the feeling because of choice…and we never regret any of them! Yes all of us know the feeling of being stuck at every single doctor appointment, monitoring event and so much more because you have never been alone. No we don’t take all the medications you do but we do go and pick them up. Yes we all know how it feels to remember the questions the that are asked because we all know your medical history and are there to help in case of emergency. We may not have to be strong in your particular situation but we have to continually remind and encourage you to be! Now when it comes to people asking us if we are okay no we don’t know that question because they usually forget to ask that one because they are more worried about if you are okay than if we are!” At this he looked wide eyed at me!

After that conversation with my son I recall many conversations with my very dear friend who just recently passed of cancer who always said of my other children ” I’m worried that so many will focus on P’nut in his journey that they will forget his sibling’s journey with him in this life!”

Sometimes it is easy to forget that people are walking your journey with you! Just like my son did, we may not always be seen on the front line but we stand closely by!  We are the parents, the caregivers,the husbands, the wives,  the brothers, the sisters, the family members, the friends that come to be the support that is needed day in and day out! We are those that care daily for those who live with Epilepsy that without us the journey may not be so bearable but along the way we are often forgotten.

Yes there is 50 million people worldwide who have Epilepsy and more who are diagnosed daily but these people also have family, siblings and friends who come alongside them to be a different kind of warrior in this Epilepsy journey that they cannot be forgotten, because they are the ones that when the person starts to feel weak and wants to give up whispers to them keep trying or don’t give up! They are the ones that walk behind the person with Epilepsy and cheer them on and becomes a warrior of a different kind! We cannot forget the parents as we raise awareness that give their all to the children out here who advocate beside the millions who live Epilepsy who dedicate their lives and voices to this wonderful cause!

Next up: Be sure to check out Katie Jameson Miss Utah Pre-Teen for more on Epilepsy Awareness!

3 thoughts on “Support For the Journey!

  1. Awesome!!! Brought back deep memories of Squirt and his journey and the journey with him. The helpless times and not being able to do anything but be there. You hit the enormous sacrifice and the being forgotten on the head.

    People do expect you to be and react normally in a very abnormal situation at abnormal times.

    Yes, tears do come to my eyes because never did I want my child or a grandchild to have to experience this either.

    My prayers are for you and the siblings who can’t just check out or shelter but are there on the frontline, that God gives you strength for each day no matter what it brings.

    More should share their story, not for pity but to strengthen others.

    Right on dear child right on!!

  2. I am so glad you wrote this. Thank you.

    And let P’nut know, there are people who do understand what it’s like to have a seizure. They may not be your family, but we are a family of strangers. Seizures suck and we all know it. If you have had a seizure, you are a member of a secret society. 😉

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