When 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