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

I Don’t Know…But I Do Know!

You’re right I can’t begin to understand what it’s like to have a seizure. I can not begin to relate to the emotions that you go through before one hits and those you experience after! You’re exactly right I have never felt the pain that comes into your head or body after a seizure has had its way.  I have never felt the disappointment of having to cancel plans because a seizure has exhausted every ounce of energy you had. You are right, you are correct, no one knows and can truly understand; unless they themselves have had or have seizures.

Do you want to know what I do know?

I know what it feels like to watch a love one have a seizure. I know the way our heart feels  one moment it’s beating at a normal pace then suddenly it turns to a quick beat and then it’s racing.

I know that, at that moment you have so many thoughts going through your mind, keeping track of time; how long have they been in this seizure?  noting what happened before, what’s going on during; gotta stay calm, Oh Lord keep them safe, what are they thinking ? don’t panic! It’s going to be alright! Is this seizure gonna change their/ our life? how long will they need to bounce back? What if this doesn’t stop? I love them so much, please let it go away, dear Lord why? Why not me? Do they know what’s going on? I feel so helpless, I can’t do anything but wait! You’re mind is pacing.

I know a stomach pain that can feel like it’s twisted in knots as I am waiting for this moment to end. I know there are times where I feel so sick  that throwing up would feel like a relief.

I know the lump that’s at the back of your throat as worry, fear, anguish, strength and calm meet.

I know the strain that comes into your eyes as you try not to blink in case you miss an important moment, knowing the importance of keeping your eye on your love one. I know the sting that can pierce your eyes as you try to keep the tears back. I know how quickly your eyes can fill with  tears like a river overflowing!

I know the tilt of your head slightly backwards as you try to keep the tears from falling, I know the turn of your head as you try to make these tears unnoticeable to the love one experiencing the seizure.

I know the shakiness in the voice and body as you try to re-gather yourself to explain to your love one what just happened, as you explain it’s ok and you are right there with them.

I  do know the sadness that comes over when plans have to be canceled, and you see the look of disappointment in your love ones eyes.

So when you say I don’t know what you go through, you’re absolutely right; No I don’t know, I don’t.

But…I can tell you what I do know and that’s if I could I would take your seizures upon myself so you wouldn’t have to. I do know that for every second you lose to a seizure, those are  minutes of heartache for me! I don’t know the emotions you feel, but I do know the whirlwind  I’ve just experienced! I don’t know your pain but I do know the aching I have when standing by unable to do anything. I know I can’t replace your daily medication, but I know I can give you a dose of laughter and smiles! I know I don’t possess the power of your rescue medications but I do know that:

“No three words have greater power than I LOVE YOU” ~ unknown source

and those are three words I’m more than happy to say!outline purple heart