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!

 

We are One!

Un Pour Tous,  Tous Pour Un!  All for one, and one for all!

This motto is one that is associated with the Three Musketeers; in the novel these words are cleverly  used to describe the loyalty between three companions. Their dedication to each other and their cause! Words that explain the fact that no matter what came their way, they were together through thick and thin!

After our son’s diagnosis with Epilepsy those words were heard day and night as he battled to find a sense of himself, to understand the changes not only in his life, but also in his brain! While; we, as his parents wondered why him , and how we were going to get past obstacles! Words heard as his siblings rallied to help him through each day, putting their own needs aside! These words echoed as we lost friendships and relationships changed!  These words we cling to as air, for survival! “ALL FOR ONE, AND ONE FOR ALL!

There are 50+ million people worldwide; it does not matter if they are rich or poor, their nationality makes no difference. It does not ask whether they are a mother, a father, a brother, a sister, an aunt, an uncle, a cousin, a niece , a nephew, a grandmother, a grand father, a wife, a husband, a son , a daughter…a friend, a lover, a co-worker, an employee, or  a neighbor! These 50+ million have something in common they have been diagnosed with Epilepsy.

50+ million people who are searching for answers, trying to understand, fighting to survive, seeking acceptance, making adjustments, overcoming obstacles and living in the day they are given!

50+million people who individually have a strength that endures the hardest day, a will that could move the largest mountain and above all the mindset that they cannot lose and the determination to never give up or back down.

Yes it is important to have individual strength, to have strength and unity as a family core!

But the most powerful the most meaningful of these is the true understanding  in knowing there is; something so much more, than what we can see in front of us, than what we can hear, than what we can touch…  and that is  that we went from one voice  to 50+million who are all in unison saying  “All for one, and one for all!”  That We went from standing alone to being surrounded by 50+ million who all stand on one platform created out of the words  “all for one, and one for all!

That our touch reaches out with our determination  not to stop with in our own lives but when we as  individuals work tirelessly day in and day out to raise awareness, to advocate, to support, to love, to lift, to listen and to help others see that they are not alone in this journey!

It took three years for my family and I to learn these valuable lessons, and now we know that although there must be individual strength and family unity that the biggest power comes from 50+ million people who are willing to no longer be individuals or strangers but become family and  believe in those words “All For One, and One For All” and  stand united as an Epilepsy community with one voice and say;

We are one, our cause is one, and we must help each other if we are to succeed!  ~ Fredrick Douglass 1847

 

Someone Like You, Cared!

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” ~ Dr. Seuss

Two and a half years ago when my son started his journey of testing to see what was going on he started out with one neurologist. After his diagnosis with Epilepsy; this neurologist received his chart with all the information. During the first week home as we began adjusting this neurologist called to chat with me and to see how things were going; as we chatted it was explained that my son’s condition was more complicated than they were comfortable dealing with, that this would be better if dealt with from the best!

Many shook their head at this knowledge but I respected this doctor, and thanked them for caring enough to admit this and see that we were placed in the right doctor’s hands to get the care needed. That first appointment with the new neurologist we all were nervous we didn’t know what to expect; we knew he was known to be the best at what he did and well-respected!

As soon as the doctor walked in we knew him, he was the same attending doctor who had diagnosed our son with Epilepsy, the same one who came and walked me through his tests, let me cry and explained to me plainly so I could understand. He was the same doctor who then after went into the room sat down with P’nut and explained what was going on so that he could understand… and then sat there as we took it in! This doctor when I asked him “Where do we go from here?” Looked me straight in the eyes and said this young man deserves to go to the top! You go home you learn everything you can about Epilepsy, you learn to care properly for him, you continue to journal so we can work hand in hand to give him the best care.” and as I shook my head he went on to say ” You help Andre’ Jr. become exceptional in the life he’s been given!” I took those words not only pondered them in my heart and mind, but grabbed hold of them and let them empower me to be the best for my son and not just that it became our goal and focus in life.

Through these past years this neurologist has worked wholeheartedly to be the best doctor for my son, he has not only taken the time to listen and chat with him but all of us! whenever he saw him he would embrace him with a hug and remind him of his strength! This doctor touched P’nut’s life so much and inspired him, to the point where P’nut started a project to give back to others who have Epilepsy. In this project his doctor encouraged him and adored him for all he was doing. Speaking to others of the work “his young patient” was doing!

Sadly today after P’nut’s check up we learned that his doctor was leaving to work on a big project that he had been asked to head up; as we left out we felt the heavy hearts of not only losing an excellent doctor , someone we trusted our son’s life to, but we’ve lost an encourager, a listener and a person who empowered us to be, not only individually but as a family the best we could be “in this life”!

Like the quote above said  when you are dealing with a condition, disease, illness; whatever it may be that you must be under constant care/supervision of a doctor unless that doctor cares a whole awful lot, and truly cares no amount of medicine, visits nothing is going to make it better, It just isn’t! If you so happen to be blessed with a doctor who cares completely it makes a difference there may not be a cure for what you are going through, but their genuineness is medicine for the soul! The walk can become a little easier knowing that your doctor is with you all the way, fighting alongside you!

Dr. L (as we called him) may not have been able to cure our son but he placed us on a path to healing mentally and spiritually and as a family! He empowered us and encouraged us not to let Epilepsy stop us but use it as a stepping ground to take our son right to the top! Because Dr. L. Cared an awful lot; life got better, our way of living became better!

As we departed his office his last words to P’nut “a couple of years from now you will be bigger and  I’m expecting great things from you!”

Dr. L thank you for walking this journey with us, and taking care of our P’nut. We will truly miss you! We know you are going to help make great strides and “We’re expecting great things from you!”

A Time to Dance!

girl and rainI remember growing up, hearing a song by the Beatles called “Turn, Turn,Turn” I loved it! I always thought that no matter how bad things got eventually they would get better, that’s what the song said! As I got older I remember hearing a scripture reading of Ecclesiastes 3 in church; this chapter said everything the song did and it floored me (of course it was explained to me the song was based on this scripture.) There was one verse that would stay in my mind  and that was “A time to mourn and a time to dance!”

As huge times of sadness entered my life from death of loved ones, major life problems etc. this verse became ingrained in my heart. I knew God’s promise of no matter how much I cried, grieved etc. I would get to a point in life where I would be able to dance with joy! I began to live in this promise, to hold onto it! This verse to me said that there would be a time to mourn and then that time would be done; and when it was, a time to dance would take its place!

Now for the past couple of years since my son’s Epilepsy diagnosis; people have prayed for him asking for complete healing of this condition, prayers so strong they made you feel chill bumps! I came to see this time as our “mourning” waiting for the healing which would bring a time of “dancing”.

The other day a quote came my way:

Life is not about waiting for the storm to pass, it is about learning to dance in the rain! – Vivian Greene

It was at that moment the old dance teacher in me was revived and I  had to say to myself wow what perspective! Dance is an art form, it is in this that the human movement is seen as the medium! This human movement is used as the  medium to convey  senses, understanding, and communicating of ideas, feelings, and experiences. It is believed that dancing helps develop communication abilities, problem solving and critical thinking skills.

So when I saw this quote and thought about my son’s Epilepsy; which the doctors referred to as “electrical storms”… I realized sometimes in life there will be storms that we won’t be able to stop and those that  may never cease! In that case it’s not about waiting for them to pass but it’s learning a new form and way of understanding, a new way of communicating your ideas, feelings and experiences. It is in this new form that we will develop the ability to communicate in the storm, a new way to problem solve in the storm  and we will see our critical thinking skills change to guide us in the midst of the storms…that is where we will begin to dance!

What I realize is that I would love for there to be a time of “mourning” that ends and the beginning of the time of “dancing”, but what I also now know is that; no, life isn’t about waiting for the storm to pass; Life is indeed about learning to do things differently! To free yourself from what was and freely move in excitement and expectation  to what will be!

We may be surprised because sometimes the storm seems so bad from inside the house but when we step out we learn the rain was the lightest most refreshing thing that touched us! After all, there first must be a storm to receive the rainbow.

So maybe we all need to learn to no longer wait for the storms to pass, but learn to move through them, to dance, be free and to live!

Reflections!

reflection1There’s a quote that I ran across  by Mahatma Gandhi

You must be the change you wish to see in the world

Even funnier yet that after reading the quote I was approached by my older children; complaining that their younger brother was not playing nicely. I jumped at the moment to use this quote and of course I did, they both said ok we get it and took off! Shortly they were back in front of me and I asked my normal question when I know there’s something wrong; “What’s the problem?” They both chimed “we were the change and our change didn’t change him at all!”

In that moment I sent them back off to play and get along, but days and now weeks after this happened It amazes me; that their response is no different than any other child’s and to be totally honest no different than an adult’s  response! Sometimes we see change as something that happens right then and there, most of the time when we use the word it’s to reference to a change you see quickly on the spot. When we don’t see the change immediately we can sometimes give up, I know I’ve been guilty of that. So I had been trying to find a better way to explain that quote to my kids; I kept thinking what is the best way to deal with this and as I thought I remembered :

A few years ago when I was teaching dance and my group and I were getting ready for one of our performances, I wanted to use dance scarves as one of our props. I searched everywhere for the perfect ones and could not find them so I set out to make them myself. I went to Jo-ann Fabrics got the material and tools etc. The material was very sheer and delicate and the only way for me to get the design I wanted on them; was I had to use this light box and I had to have a stencil that not only had the shape but also the colors I wanted to use. From there I had to turn the light box on,stick the stencil on a center part of it and then place it somewhere it couldn’t be tampered with. This process they said could take weeks even months. The process was that slowly but surely the light in the light box was going to take the images on the stencil and slowly reflect onto my material, until the material soaked it up and the image would then be embedded in the cloth! The Lady at the store told me it would take patience, and that the reflection must be constant and consistent!

Why at a time like this I would remember such a thing. Even more why am I telling this to you? I am simply saying that sometimes like that cloth I was using, a situation is way to delicate to want instant change ;   instant change for that cloth meant it would damage the cloth and lead to it unraveling, and so that goes for our lives! Sometimes the things we want and need to see change in, are the things we need to be willing to place ourselves under a light and be the stencil for or the guidelines for. That we must be willing to be patient, constant and consistent; so that those around us can slowly soak up our pattern to the point that they slowly reflect what we are and what we want to see!

So parents if we want to see certain morals and characteristics in our children; we must not only talk to them about it but we must be willing to be the image for them to reflect!

wives, husbands if we want to see love, respect etc. in our spouses we must be willing to be the image that they can reflect!

As for me I’m not only trying to be the image as a wife, and a parent, but in my life I also have to be willing to be the image of awareness for EPILEPSY! Yes it is something I Would love to see a change over night, but I also know it is too delicate of a cause, situation to want that instant change; for fear that instant change would unravel what others have worked years to build! So I, like many other advocates have to be willing to place our lives, our struggles, our compassion, our love, our hope, our faith, determination, fight and so much more under the light to slowly but surely be reflected and embedded into the world around us!

So tomorrow as we welcome Epilepsy Awareness Month around the world; those walking the journey, those advocating don’t give up, don’t lose sight be patient, constant and consistent your image will lead to the reflection that changes the world!

Happy Epilepsy Awareness Month!

My Kind of Stable!

“What happens to us Mommy? Do who we are, to other people change, because our lives changed? Did Epilepsy change us that much?” This was the question that rattled my ears, my brain and my heart Saturday: as we drove home from our afternoon appointment! I looked into the rearview mirror at my 10yr. old son and his face stared at me earnestly while tears filled his eyes!

I knew why he posed this question it is one that has gone through my mind millions of times,but yet have not touched my lips; they have stayed as far back in my mind as possible. They have been placed there to keep the hurt from becoming an unwanted reality!

I slowly but surely answer: “What happens to us? well we go on to be the strong and loving people we were destined to be! We go on to be united and strengthened as individuals and a family! We continue to live each day as it comes, and to enjoy every moment we can with love, and lots of laughter complete with many memories! As far as who we are to others, sweetie only that person or those people can decide! Did Epilepsy change us ? the answer is Yes and No!”

Now to you who may be reading this blog can I ask you this question? What is stability? What do you consider to be stable in your life? What are the qualifications for someone to be seen as stable in your life?

The definition of Stable:

Firmness in position; continual without change;permenant. Resistant to change, especially sudden change or deterioration.

These words were how I classified stability in my life, and I likewise saw myself to others… But over the past years I’ve wondered have I done myself and those close to me more harm with thinking this way? Have I set myself and now my family up for a heartbreak?

What happens to us? I think it’s a question many Moms and Dads ask themselves individually, a question many parents ask each other. Many families together wonder. Something that Individuals, couples, love ones etc. ask when something hits their lives. Something that drastically changes their lives from what they once knew it!

What happens to us when we can’t make it to every celebration? What happens to us when I just can’t pick up and go? What happens to us when at the last minute plans change, and I must cancel? What happens to us when schedules are no longer flexible? What happens when I just can’t talk on the phone for hours? What happens when I can’t entertain the way I use to? What happens when I can’t go out with the girls/guys on a normal basis? What happens when the reality of life hits?

Does who I am become a who I was to you? Does our relationship change? Will you see me differently and view my life through eyes of sadness?

Or will you be there to help me “Seize the Moments” I can? Will you be there even when I can’t? Will you understand when at the last moment plans change? Will you schedule me in, even when I can’t be as flexible as you? Will you hear me even when I can’t talk? Will you let me be part of your life even when I can’t be the life of the party? Will you hang with me even when I can’t hang out? Will you stand with me, when life jolts me and throws me? When reality settles and hits me all over will you stand with me through it all?

I see things such as rocks, mountains, many things in nature as stable because they’ve been around for a time! Look at caves they have been around from the beginning of time they are very stable, and hold mysteries untold…. But the truth about caves are they started out as rocks and over time the elements around them have edged and formed and molded them into the beautiful symbols of stability they are today; and when you look inside their is a treasure to be found inside of them!

In the same way to be effective parents, significant others, love ones, extended family and friends; a community of support we too must learn to be as stable as the rock but also letting the change of time and life mold us into caves! A true symbol of stability that others may need! The treasure that will be stored inside is not only that of memories but of love that will be carved into the rock that will endure this lifetime and stand through everything!

So my question to you are you willing to be my kind of STABLE?

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