Tuesday, January 7, 2014

the day we've been waiting for

It's here - finally!
Ben has been seizure free for 2 years!
We've been waiting for this day since June of 2009.  Ben was only 2 years old when he had his first seizure.  It seems like that was so long ago.  And we have certainly lived a lot of life in the 4 1/2 years since the countdown began. 
I know the doctor warned us about celebrating prematurely.  He said that he can not consider Ben in remission quite yet because the Doose diagnosis changed everything.
But life is worth celebrating
We've been waiting for this moment too long to let it slip by without recognition. 
So we celebrated!

The significance of the day was definitely lost on Ben.  For that I am actually grateful.  I'm thrilled that this burden has become a faint memory for him.  I'm not sure it'll ever be that way for us. 

In June of 2009, I had no idea that we would have to wait this long for a celebration. 

And in early January of 2012 - I had no idea that the end was so close. 

The future is still a mystery. 

But we believe that it is the end of epilepsy for Ben.
We are trusting God that the seizures will not return. 
We have a HEALTHY child that will wean from his final med at some point (hopefully soon!) and remain seizure free - that's our hope.  We also pray for wisdom in parenting him and for continued progress academically.
But it's time to let go.
It's time to move on. 
It feels like this beast has been hovering over us for so long and I'm ready to start 2014 without it constantly being at the forefront of our minds. 
I battle with the fear of seizures returning daily.  If Ben is not with me and the phone rings, my mind instantly hears, "Ben just had a seizure".  It's my first thought.  If I hear him make a strange noise while sleeping, my heart falls to my stomach.  This nightmare has wrapped it's long, cold fingers through our hearts and minds and it's time to let it go.
In 2014, I want to focus on "The Lord says, 'Forget what happened before, and do not think about the past.  Look at the new thing I am going to do.  It is already happening. Don’t you see it?  I will make a road in the desert and rivers in the dry land.'"  (Isaiah 43:18-19)
As we left the celebration, Ben wanted to launch a balloon in the strong winds.  It didn't take long for that balloon to sail high into the sky.  It was a perfect way to describe how we are feeling. 
Let it go. 
Focus on the new things that God is doing in Ben's life. 
So long, seizures!

 Thank you for loving and supporting us throughout this ordeal.  We certainly never felt like we were carrying this burden alone.  We continuously thank God for restoring Ben's health and for giving us what seems like a second chance with him.
"About Benjamin, He said,
'Let the beloved of the Lord rest secure in Him
for He shields you all day long. 
And the one the Lord loves, rests on His shoulders.'" 
Deuteronomy 33:12


  1. Awesome news. We hope to get there in a few months.

  2. God is SO good!! I love the scripture from Isaiah. So appropriate for 2014!!!

  3. I just recently started reading your blog and wanted to say congratulations! My daughter began having seizures in July 2011 at age 5. We were lucky to find a med combo that worked for her and celebrated our 2 year seizure free anniversary last month. I completely understand your fear of the seizures returning and the feeling you get when the phone rings. We started our wean process 2 weeks ago and it will hopefully continue through April. Best of luck to your family as you move forward on your journey!

  4. just checking on you guys, great news, praise God!

  5. I LOVE LOVE LOVE this post! I'm so glad the pain is a distant memory to Benny, and I pray peace for you and Leeon! Blessings in 2014!
    Amy Fulfer :)

  6. I'm so happy for Ben. Congratulations!!!! How is Ben doing? Long time no updates.