BE LOVE.BE LIGHT. BE UNITY.

belovebelightbeunityWhen we started this journey in 2011 my  son was a kid…a small child and we lived in that time trying our best as parents to get him through a new diagnosis and yet savoring and preserving the most of his innocent childhood seizing each moment that life with Epilepsy would allow! Especially at that time uncontrolled seizures! Now fast forward five years and that boy is no longer a child he is a teen and every day morphing into a young man trying to find his way and as parents our role has changed from trying to preserve his childhood to making sure he has his foundation and he is ready for the world that is ahead of him. Recently this Summer after a series of testing my son was diagnosed with a few more things other than his Epilepsy but they were caused by how long he has lived with Epilepsy and also by the time he went  without being diagnosed ; this disorder will forever affect his brain and his ability to process things throughout his day. Since this diagnosis we have had to learn as a family how to do things differently to not only help him in the present but to prepare him for his future!

His future, most parents start preparing their teens for a future with joy and they have no hesitations and no big worries, but I can’t honestly say as a parent of a teen with Epilepsy that my thoughts may be so easy going.I’m sure if you ask others they may agree When your child has seizures not only are you worrying about a time where seizures may be increased, but you are worrying about overall health and care and those who can be a good support base for your child when you are not right there! My son has many times when he not only can find dark times of sadness, where he is  trying to find his way in the day when his  thoughts are cloudy with negativity, times when he can’t remember to do simple tasks that come so naturally to many of us! Times when important memories don’t come easily and my honest worries are will there be someone kind enough to take his hand and help him through those days he can’t walk on his own! Someone who won’t prey on his weaknesses, or laugh at his vulnerability but walk by his side seeing the amazing person he is! Taking his hand and being there his support and his light in the days that are dark, his love when he is not confident in himself?

In raising my children I have been big on teaching them to BE LOVE…to BE LIGHT to everyone that comes across their paths in this world because their job is not only to remind them that they matter but also to remember You never know what battle someone may be fighting that your encounter in that moment of the day could bring them hope! They live by the no matter what your day is Always BE LOVE , ALWAYS BE LIGHT…. So my hope is that there will be many along his journey that have the same morals and values that he has and that also they live by the BE LOVE. BE LIGHT…and no matter what your day is always BE LOVE, ALWAYS BE LIGHT mentality!

In a community we are asking for a light to shine on Epilepsy and more awareness to be raised and more understanding and now all the more I understand why! We can’t afford anymore to have so many out here feeling like they are walking a journey of being misunderstood and not cared for. It is hard enough to deal with seizures when you have family helping you but when you are walking this journey by yourself it is long and dark and no one deserves to fight alone, when you have encouragement you feel you can do anything…and on days the battle gets tough you have a team cheering you on reminding you never to give up!

I implore you Epilepsy community continue to raise your voices don’t be quieted , don’t let your lights be dimmed out raise them every day and especially this month of November  as we raise awareness BE LOVE. BE LIGHT. BE UNITY! 

We Cannot hold a torch to light another’s path without

brightening our own” ~Ben Sweetland

Coming Back…The Purpose Of The Journey

purpose-of-journeyIt’s been 7 Months since my last post… I remember a few years back in November during a family gathering I passionately told my older sister I wanted to share my family’s Epilepsy journey so that they could understand our daily life…what things were actually like for us on a daily basis! She immediately encouraged me and  recommended that I set up a a blog and that night after everyone left I went to work.  when I first started this journey of blogging, and writing about my family’s journey with Epilepsy the writing came so easy! I was able to write straight from the heart tapping in to every emotion felt from the initial testing to the actual diagnosis and the first year in and the days afterwards. As I got into social media I immediately found a community of others who had Epilepsy or cared for someone who had Epilepsy and a friendship grew and soon days were filled encouraging and uplifting each other through long days and hard times,and soon home struggles became more and blogging became less and less.

Somewhere in the community of people I had come to the idea that my writing needed to become a fairy tale of all things happy and I lost my way, my very purpose of writing the very reason of my journey! I silenced myself and kept my family’s journey just that my family’s! Only to constantly say to myself this wasn’t the purpose of all this, we haven’t gone through all this, learned all this to not share with or encourage others!

Over the years since I have actually sat and intimately written; life has taught my family and I many things we have walked a long path and just recently  over these past months since my last entry (and even over this past year) my family has been on a very real journey with Epilepsy…and I have had to sit and ask myself the same question my sister asked those years ago when I first wanted to start this blogging journey:  “What do you want from this?” “I want others to know that they are not alone (we are not alone) on this journey! I want people to understand what it’s like for a family who lives with Epilepsy!”

It’s been 7 months since my last entry and a lot has happened but one thing that has is I had to be quieted and reminded of what I came here to social media for in the first place. I wish I could say in these months that it’s been a fairy tale but it hasn’t and that’s because I had to understand that in the journey of life nothing is! There are days filled with joys and sadness, days filled with ups and downs, days where goals are met and days where we  are doing good just to be up and moving! My purpose was to share the “real journey” with you through the mother’s eyes to shed light on life with Epilepsy to make people aware and encourage other parents and caregivers that you are not alone! That you have to take each day as it comes because that is really all you can do!

So as we celebrate November Epilepsy Awareness Month, what better way to do so then to COME BACK ! Come back to where I belong with my community of advocates, with my Epilepsy bloggers…To the purpose of my journey to write life as I see it day by day and hope that it not only encourages others but it helps them feel and become part of a community!

 

Thank YOU, my Epilepsy Community !

imageFriendship is born at the moment when one person says to another What you too, Thought I was the only one! ~ Clive Staples Lewis

This is an open -letter of thank you! That is well overdue, it has been on my heart for the longest and in my mind from the day my journey started with YOU!

Dear Wonderful and Amazing YOU,

I stood at this crossroad, like a fork in the road; on both sides of me there were people I knew coming and going, waving as they quickly passed by! A few times I reached out they touched my hand but kept going along because they had their own journey to travel! Where I once traveled the same road, for some reason in an instance my journey, the road I had to travel became different overnight.

Those that I would normally chat with about everything under the sun, our chats soon became short and very surface. Those that would quickly touch my hand as they past by, their touch soon became just a wave. And soon all these things became a blur as I stood at the crossroad! At first I was very sad, I was heartbroken because I felt alone and I was confused! Once again I was at a place where tears fell constantly, but there was an afternoon where I wiped my tears and looked around there was something new!

That something was YOU! I told you the journey I was on, I explained the obstacles I would come across, I explained to you my brokenness, I showed you my baggage. I let you observe my wear and tear, I listed my needs; I poured out my story like oil and you listened intently! You nodded and you smiled and as you turned, I thought it was to walk away…but you turned and showed me you were exactly like me, like a mirrored image of me the same! We both smiled and walked along together and soon we joined arms as we walked and talked, chatted and laughed.

Walking the journey together became very natural and we soon forgot we had just met, we soon forgot that we had previously been strangers! Those things seemed so obsolete because we felt as though we had been together our whole lives, and what started out as a common friendship soon became a bonded family! Even along the way when life tossed things at us we embraced and walked them together!

Understand that had YOU not come along my path I would not be who I am today! Thank you for showing your true image and not being ashamed of YOUR journey. I have not known you my whole life but the time I have, you have left footprints on my life that can never be erased! When my walk on this journey is done and maybe people will tell of who I am and what I’ve done in life there you will be in my story because I wouldn’t have made it with out YOU!

My Love Always,
ANGIE

This letter is to each and every one of YOU and YOU know exactly who YOU are! Thank you for walking the journey with me.
Thank you to everyone who was not ashamed of their life with Epilepsy who gladly came to walk with me and my family embracing us and loving us! We started with a small family and now realize we are surrounded by 65million and their love ones who are our family and strong community!