Another Single Moment

On this very date three years ago what we didn’t know was that; that one moment that we witnessed…was actually a seizure, and more than that; what we didn’t realize was that one single moment was getting ready to change our lives forever!

….to be continued…

Had it not been three months later I would’ve thought we were stuck in time reliving the same single moment over and over again; a sick joke being played but it wasn’t! It wasn’t January 19,2011 but the date was April 18,2011…excitement and celebration was in the air once again and the kids and I had just come from grocery shopping. As I was making breakfast they had went to the lower level of the house and began singing and running around the pool table. As they sat down to eat my oldest son screamed and the sound was filled with pain and it stung the air. As I turned to see what was going on his eyes were locked and rolling his head twitching all these movements were concentrated to the left of his body! After a few minutes it stopped but as he try to explain what was going on his speech was so slurred and I couldn’t comprehend what he said; eventually he began trying to eat but he didn’t know how everything fell from his mouth and the same thing happened as before!

As I dialed his pediatrician’s office she quickly advised me to get him to the emergency department! As we got him in the car and settled he got sick on the way and he was scared. Once at the hospital he was checked in and the testing began and it was hours and I remember the anxiety I felt was so high as I paced waiting. Each time I was asked to leave the room for test after test; the feeling of being helpless, not knowing enhanced my anxiety!

Finally a technician came in to run the EEG and when he was done he called me back in the room… he told me he wasn’t suppose to say but he saw both slow and fast brainwaves on the results, he went on to tell me to journal every single thing because that would in the end what would help diagnose what was causing these episodes! He also reminded me to know that God was with my family every step of the way!

After all the tests and their results were looked over a doctor came in and announced that my son had a seizure and that he wanted him to see a neurologist as soon as possible!

A seizure, a seizure I hadn’t heard that word since his first febrile seizure at 1 1/2 and I was not and didn’t want to hear it now, but it was said! What caused it they had no clue and their advice to follow-up with the neurologist they referred.

Another day of celebration turned into a day of not knowing what the future held for our son, for our family…but yet and still on that day a journey to find answers began!

That moment, that we witnessed three months before; that moment we witnessed just hours earlier …was actually a seizure, and more than that; what we didn’t realize was that one single moment was going to lead to another single moment and this time it wasn’t a question of if it was going to change our lives; because at the moment the word seizure was spoken. That single moment hours ago well it had changed our lives forever!

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!

Times are Changing

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From day one my kids have all been those that had to stick to a schedule, one day off a complete chaos for weeks until they calmly slipped back into their schedule! My husband and I had plans for our children, hopes and dreams strategically made for each one of them! Our set house life an the way we went about things was to raise our kids to be the best at everything and to achieve these goals we had for them! For this very fact and reason I became a creature of habit ( in my earlier years I just went with the flow.). In this habit I started to go about things in a mundane way!
This was our life and at that time from the parental point of view my husband and I thought it was good! Those years when P’nut first started to show signs something was going on with him it threw our lives for a loop and things began to go off balance a little but we made it through that time somewhat!

Shortly after P’nut’s diagnosis and things had started to calm down, my husband and I decided it was time to get the house back in order, we felt it was best!

You see we tried to place our home back under that routine, back under the hopes and dream we had created! One day during classes P’nut broke into tears… He couldn’t remember what he had been taught, he felt incapable of fulfilling the path we had put him on, and he wanted to give up! He was mad at himself for letting his Dad and I down and spent his whole afternoon in tears!

That night as I sat going over the day I knew tomorrow couldn’t be the same for anyone but especially P’nut. I knew the schedule, routine, hopes and dreams we had spent 8yrs. Building and perfecting were going to have to be tossed out and we were going to have to start from scratch. I also knew even then that it may take a few tries to find the right fit for us!

I started asking myself these questions:

1. What was the problem/challenge?

2. What was the need?

3. What were possible solutions?

4. What was the focus?

5. What could be the initiative?

6. What was the goal?

7. What would be the impact?

As I set and pondered these questions….I was getting ready to learn the biggest lesson of my life!
Something was about to be formed, something was being made from the broken pieces and that was…
E.L.I.T.E.

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**