Well I had to take this last month to process the things that have happened since my trip to Baltimore…..As I went to the American Epilepsy Society Annual Meeting I was prepared to soak up all I could on epilepsy research.  This was exciting to be able hear from the experts in the field of neurology.  As I sat in meeting after meeting my mind was on OVERLOAD from processing so much information.  I had the wonderful pleasure of meeting so many wonderful people from doctors to nurses to other nonprofit organizations.  The experience was truly PRICELESS!

Little did I know that I would be able to hear from doctors that had done research on children that were exposed to valproate in utero.  As I sat in this room full of neurologists hearing from these doctors present their findings my heart could not stop racing… mind was trying to soak up every word that was being said.  At the end of the presentation of research, there was a question and answer time for the doctors to ask the researchers about their findings so you know me I stood up and began to share briefly about our story…. As I shared it put a face to all the charts and graphs that had been presented.  What a wonderful opportunity to remind the doctors that those numbers, charts and graphs are people!  The neurologists and nurses were so welcoming with their kind words.  When I had the opportunity to meet face to face with the two doctors that presented their findings my heart was so full of joy and thankfulness.  These doctors had spent their time and energy giving it their all for this research.  It had been a long haul for them as they had done years of research to get to the point to where they could present their findings….As I sat across from them and they shared more about their research, I wondered if they realized how important their jobs are. They shared of the times that they wished they could have had more funding to continue these studies….I saw their passion as they spoke of their work and their genuine desire to find answers….

The doctors asked about Samuel and his progress.  I shared of where we had been and the road we were on…..They were encouraging, yet you could see the sadness in their eyes as they knew of the journey that we were on.  As I sat there talking, all I could say was thank you for all your hard work.  I gave them a copy of my slide show presentation from when I went to DC to speak before the Institute of Medicine Committee on the Public Health Dimensions of the Epilepsies.  I told them to pull out these photos when the days are hard and discouraging as a reminder of why you do what you do.  They have proven that our story needs to be heard, not that is easy to hear but it needs to be heard!   I feel so blessed to have had the opportunity to sit down with them and share our journey as well as their journey.  Our lives are forever changed by these great researchers.  They gave of themselves, to keep fighting the fight even though it was at times exhausting and discouraging.  They sacrificed time away from their families to give to research, which has given to my family the answers that we needed…..

All this to say that I have reflected on what I am suppose to be learning and sharing with others…. I am learning that I have to forgive myself because at times I could not breathe…. as I thought of how my seizure medicine that helped me to be a seizure free adult has now harmed my precious little boy.  For the first time in years I can breathe….I want to share a song with you…Here are the lyrics:

by: Mary J. Blige

It’s gonna be a long, long journey
It’s gonna be an uphill climb
Its gonna be a tough fight
There’s gonna be some lonely nights
But I’m ready to carry on
I’m so glad the worst is over
Cause it almost took me down
I can start living now
I feel like I can do anything
And finally I’m not afraid to breathe
Anything you say to me
And everything you do
You can’t deny the truth
Cause I’m the living proof
So many don’t survive cause
They just don’t make it through
But, look at me
I’m the living proof
Oh yes I am!
Thinking back life’s been painful

Yes it was
Took a while to learn how to smile
So now I’m gonna talk to my people about the storm
So glad the worst is over

I can start flying now
My best days are right in front of me
Yet I’m almost there
Cause now I’m FREE
I know where I am going
Cause I know where I’ve been
I gotta feel strong and show it
I will stay strong keep growing
That’s the way that I win
Nothing about my life’s been easy. NO-
Nothings gonna keep me down
Because I know a lot more today
That I knew yesterday
So I’m ready to carry on

The little boy, who some people see as broken is changing this world!  As a mother, I never wanted my son to be the face for epilepsy or any other disorder…. I never wanted people to see him or myself as having something wrong.  Yet, I cannot change what others think of us.  I am not an epileptic.  I do not have thin skin or low self-esteem because I do not want to be called epileptic.  I am someone who lives with epilepsy and it doesn’t define me.  Samuel’s language disorder will not define him either!  This will be a long journey and has not been easy but this will NOT keep us down……I know where we are going and we are going to share about our storm……Our best days are in front of us……I can breathe….I can fight this tough fight…..We can start living………I can finally breathe and share my son with the world and we will be the living proof that we can do anything……..

One thought on “LIVING PROOF……..

  1. mrslinkgetter says:

    Brandy, this is so well said and mirrors what I believe as well! I never wanted my son to be a “poster child” for epilepsy. I do not want to stand in that position myself. We are people who just happen to have this condition. At the same time, we must speak up about what the condition does to impact our lives. Staying silent does nothing to assist the doctors, the public, and one another. We are not “poster people” we are individuals who just happen to have a brutal condition. THose pictures that you gave the doctors are ideal! We are not charts, numbers, statistics, and theories. We are people whose lives hang in the balance waiting for help. THank you for what you are doing. Ginny Miller

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