Epilepsy as a nuisance

December 13, 2010

I am once again wide awake as the rest of the house slumbers. I used to absolutely hate when I would wake up like this but now I find the quiet somewhat soothing.  It gives me time to reflect on my life and even shed a few tears quietly for “the boy” as I so often referred to Joshua.

I did that because he was so ornery and full of life just like a typical boy.  He had a way of pushing your buttons to the point your blood pressure would rise and then he would sit back and laugh.  I of course could never stay upset with him.

I have been reflecting a lot over the last couple of days as to how my life has been altered to the very core since we lost Joshua.  Once your typical suburban household (Mom, Dad, 3 kids, dog and cat) who attended church, had dinner together, attended soccer games, choir functions and had some lovely vacations, we are now faced with an incredible loss we need to overcome.

Only a few weeks ago we were planning our lives around our three kids and now we suddenly realize we will go from empty nesters in 6 1//2 years to 3 ½ years.  That change suddenly makes me feel so very old.  I realize how young Joshua kept us with his loving spirit and easy smile.  How he made sure I never took myself too seriously and made me fail at all attempts of organization and scheduling. These are very good lessons for a semi perfectionist like myself and I am better for them.

The biggest thing is it completely changes the way I see my future.   Has Joshua’s loss shown me where I need to be and what I need to do?  We had always thought of his epilepsy as a nuisance.  A chronic illness he took lots of meds for and saw some doctors on a regular basis.  We did some research  early on and with every change or new word from the doctors but we never realized how serious this is and we certainly were not aware of conditions of death from  SUDEP or Hypoxia.  As we read more over the last weeks we realize this is a problem that is under the radar and by some reports kills as many people per year as Breast Cancer.  Joshua fits perfectly into the category.  Normally healthy boy between the ages of 12-14.

This whole process and everyone's generous contributions to Epilepsy Research makes me wonder if there is more to my part in this.  Has it become my place to educate so others may possibly avoid the same loss we have suffered or to raise awareness and funding to obliterate this illness altogether?

Joshua’s former Neurologist had recently been asked to serve at Walter Reed Military Hospital which he graciously accepted.  It seems our soldiers from the warzone who suffered brain injuries are often now suffering from seizures.

This problem is growing and  we have but a  few medications to combat.  Some with potentially lethal side affects.

I wish to God I had known this before and could have possibly done more. It remains the “what if” although I know in my heart that God needed him home.

While I am in unfamiliar territory…my future, I will follow where the Lord leads me and do the best of my abilities.

Sherri