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!

E.L.I.T.E.

When you are open to change, when you are willing to be led, when you are willing to be used, when you are willing to accept that which no longer is and embrace what has become, when you know that things are out of your hands and in the hands of someone bigger than you that is Humility! ~Angela Floyd

I could’ve kept going over and over in my mind what plans we had made for P’nut , what he was suppose to do and be. The legacy he was suppose to leave but…
There are times when you just can’t go back to what you used to do, and more times when you can’t go back to who you were! This was one of those times, uncharted waters for me and my family, but if I wanted P’nut to make it a step had to be made!

We had been given his limitations, his boundaries. We had been told all the effects Epilepsy had on social and academic life. We had been told of all the drawbacks… So hmmm, were we basically to treat him like he was normal but not expect much of him? Where do you go with that? When everything is stacked up against you? When the odds are said to not be on your side?

I was going to have to be willing to change my way of thinking, I was going to have to be willing to act a new way! If there needed to be change, if I wanted change it started with me! It had to start with me! There was no way I could expect my son to accept his Epilepsy if I hadn’t fully! Epilepsy was going to be with him the rest of his life, he was not growing out of it! For him there was no cure etc. all the “drawbacks” and limitations and changes they needed to be accepted fully, with no ifs ands or buts about it! These were now going to have to be seen as building blocks, not stumbling and we were going to have to build life around these! Find a way to deal with these on a positive rather than negative! For him to accept and see that everything was going to be alright, we had to show him how!

It was at this time that I was given the concept of E.L.I.T.E. which means:
E.pilepsy
L.ife
I.s
T.eaching me to be
E.xceptonal

You see I could no longer expect him to meet requirements and expectations if I wasn’t ready to meet some myself! If I wanted my son to have a chance, if I wanted him to beat the odds… Well I was going have to take the journey with him, and I was going to have to be way more than vocal I was going to have to back it up with action! I knew there were times where he was going to be able to walk, jog and run beside me in the journey, but I also knew there were going to be times where he was going to need me to pick him up carry him to that goal! If I wasn’t willing to train myself and make myself stronger for the journey and this life I was going to be no good for him! This was not something I could put off on anyone else either, I couldn’t wait for someone to show me, I couldn’t wait for someone to teach me… I had to educate myself on everything about Epilepsy so the reading began and the note taking commenced! I was willing to change! I Was open to learn! And Epilepsy was my subject!

When it came to life I had to learn how to see it different, that there was no perfection in it! What man saw as perfect and the guidelines it set on perfection in this life were flawed! That life was not what man created but God and in that all are created equal and all created wonderful! That life and all it’s beauty was not held to one set of rules, but was actually based on each persons uniqueness and ability. Through each individual eye life will have a different take, look and outcome!

I was learning that the past was just that the past and couldn’t be relived! That the present is just that, and needed to be lived in fully for that was the time given! I was learning to live in the moment and that was going to be something he needed to embrace, the here and now! The future was to be left to live in at that time and not before it!

I was having to move out of my comfort zone and be taught by others! I had to be willing to meet and speak with others who knew and lived with Epilepsy and be willing to learn and take from their experiences, so I could be not only a better Mother to P’nut but a better caregiver! The teacher of the house had to be teachable!

I had to stop being the normal mom, making the kids accept me for who and what I was and strive to be so much more for them! I was no longer ok with what I was, they would sometimes say Mommy you’re the best, the best was no longer good enough!

You see life is not about being firm and unmovable; there will be seasons where that is fine and it’s what’s needed, but many more seasons where to survive you have to be willing to change with the circumstances! I thought that I had given my son life by having him, I thought that I was the one who had lessons to teach…but I was wrong!

I have learned Epilepsy just doesn’t affect the person who has been diagnosed with it but it affects all those who love them. You see in my two year journey with Epilepsy ,Life it is Teaching Me to be Exceptional and in turn I turn around and teach my husband and together we turn and teach our son and other children; and then united as a family we teach each other and learn together how to be Exceptional!

E.L.I.T.E. is a circle that continues, it is a ever growing process that you never perfect, because as you complete one level of living it is time to learn a new level and each time there is such an awesome goal you reach a life that is completely fulfilled in every way!

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Breaking Dawn

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The diagnosis had become my death… I was lifeless those months after we were told P’nut had Epilepsy! I tried day after day, night after night to process, to understand how our life; his life had changed with one simple word! It was like a zombie phase or something,  while I was struggling to live on the inside, I had to fake life on the outside! Smiling through the pain, making others laugh when I had nothing to laugh about, helping this person and that person in their spiritual growth, praying for others, worrying about others, making things come together here and there. I was pouring into others to the point that I had depleted anything that I could’ve used to revive myself!

I remember in that time people who had approached me (well intentioned I’m sure) giving advice on praying for P’nut: I was told to anoint him and pray healing scriptures over him, to have faith as little as a mustard seed, to fast and pray, to pray releasing of the enemy’s hold on his brain. To pray harder and to believe what I was praying, to do this do that! All the while people would tell P’nut God was going to heal him just be patient…trust me I was praying, I was praying what seemed like nonstop I kinda felt like I was bugging God! To make it worse with all “this advice on the right way to pray” I was second guessing my prayer life, I was second guessing my faith, and so much more! Here I was a pastor’s daughter example to all, the one in my home witnessing to the awesomeness of God and his willingness to do the impossible! I saw my husband praying constantly, worshipping and praying nonstop …both of us earnestly praying for our son’s healing and God wasn’t delivering! My faith and walk were on display for all and nothing, no response ! It left me confused and wondering and more depleted then ever!

During those days I was  constantly sitting and thinking waiting for something, waiting for anything! Then one day during the fall ( I can’t say the exact day or date, but I know it was fall because the colors of nature were vivid and the air was crisp) I was braiding Alex’s hair and a movie came on, at first it was just her and I but P’nut & Austyn joined us. At the time of watching the movie I had no idea what it was called, but it followed a family who had a daughter who was sick with Leukemia. It showed the journey from diagnosis, sickness… You saw the emotion and struggle of this household it was real! To say the least at the end of the movie not a dry eye was in that room!

That night as everyone slept I struggled, I was wrestling with God and I was determined to win! As I was wrestling a part of the movie flashed before my eyes, I broke down and cried! As I cried I apologized to God for pushing my agenda and will for my son’s life, I apologized to God for not once asking him over those months what was his will and purpose for all this? As I did this I surrendered everything!

Have you ever cried so hard that you have been drained mentally and physically? If you have you know what I’m talking about, and you’ll know all the more that this was that kind of night! I remember pleading with God to help me and to help my family. After that I fell asleep!

the darkness, the death was being removed…

The part of the movie that flashed before me was the fact that everyone was so busy trying to give this girl life, that they didn’t let her live what life she had! They were so busy trying to give her something that they really didn’t have control of, that they took away what control they did have! They were so busy trying to create what they couldn’t that they killed what they had!

That morning a light shone through my bedroom window it was bright and comforting!
As I looked out the window I saw the rays of the sun BREAKING through the darkness. It was DAWN!

I hadn’t seen the sun rise in such an amazing way it was breathtaking and as the Sun gradually made it’s way into the peak of the sky…I heard something come from the kids room I hadn’t heard in a long time, laughter and more laughter! As we went to see what was going on the kids were playing, talking and laughing and who was in the center of all this? P’nut…his eyes hadn’t looked so bright and as their Dad and I stood at the door he smiled and they all smiled and said good morning!

At that moment I took in the deepest breath and released it, I was alive! When they asked what we were going to do that day, I responded with “we are going to seize the moment…and live!”
(Which is when and why our family started using that phrase in all we do.)

You see I know and speak first hand of what change, unexpected change can do to you, I know firsthand how a diagnosis can impact your life even your inner being so hard! I have personally experienced the pain not knowing and not having control can cause! I know personally the anguish a parent can have with knowing they can not help their child the way they want!

I also know what comes after you accept the change! I know the impact the diagnosis left will become your limp the evidence that God was there! I know after the pain you receive the best blessing! After the anguish comes the peace that there is someone so much greater than yourself and he has it all under control!

I am a living testimony…
“that weeping may endure for the night, but joy comes in the morning light” Psalm 30:5

And after all is said and done you too shall breathe deep and live!

***After that day P’nut went 2 months without any seizures, but even after they started again we lived! The movie I referenced was My Sister’s Keeper**