Originally published on July 24, 2011

I guess you can tell by the title that I have been thinking about some heavy things this weekend.  First, there was the tragedy in Norway.  Then, a school mate of mine (a year younger) died of a stroke.  A stroke!  Lastly, I witnessed a man at the gym step off of a treadmill and collapse on Friday.  I am still struggling with what I saw.  He was completely unresponsive.  I ran for gym staff to call 911.  The paramedics arrived, performed CPR and even shocked his heart.  When they finally decided to transport him to the hospital, there was still no improvement.  They were unable to get a consistent heart beat.  Perhaps the saddest part of this event was that his wife was standing right there watching the whole thing.  She was pacing and wailing and frantically trying to get in touch with her daughter by phone.  My heart wept for her.  I don’t know whether the gentleman survived or not, but it shook me up – even though he was a stranger to me.  I don’t know that I have ever witnessed anything like that except when it was my own child.  And in that situation, I had so much adrenaline going that I really don’t think I experienced it.  

One thing I found interesting is the sociology of a situation like that.  One of my students walked up and said, “I can’t stand it when something like this happens and people just stand around staring like jerks.”  And he went about his way.  I overheard someone else say, “I can’t believe people that can just continue their workouts.”  Same situation.  Two different people having two completely different opinions about what is compassionate or even appropriate.  

I’m not a big worry-wart, but I used to be. God in his great mercy took that away from me when He gave me Shelby.  He knew I could not survive her condition with that kind of fear.  SUDEP (Sudden Unexplained Death in Epilepsy) is more common than those struggling with a chronic seizure disorder would like to think about.  And now, with current technology and online Dravet Support groups, I  hear almost immediately about the deaths of Dravet patients and can keep a running yearly total in my head.  BUT, in order to have a functional family life, I have to find a way to pray – and let those things go.  I have to rest in God’s love, protection and timing.  Chuck and I have made many decisions in Shelby’s life to handle things differently than many of our Tiger parent friends (parents of a child with Dravet Syndrome).  I don’t pretend to know that our way is the best way.  And believe me, I have second guessed more decisions than I can count.  But for the well being of our entire family, we have chosen to avoid some of the more extreme versions of monitoring Shelby.  It may seem simplistic, but we take the best care of her we can, make decisions based on research and professional opinion, pray, and trust God to take care of the rest.  Trusting in God at this level involves accepting that God’s plan for our daughter may not be what we would choose.  It certainly hasn’t been up to this point.  But God does have a plan for her.  And having faith in that plan is the only thing that gives us peace.  

Jesus said:  “Peace I leave with you; My peace I give to you; not as the world gives do I give to you.  Do not let your heart be troubled, nor let it be fearful.”  John 14:27

Originally published July 14, 2011

I walked with a friend today who witnessed her child having a seizure for the first (and hopefully only) time.  It brought back alot of memories for me.  The panic, the fear, the ER visit, worried friends and family, and all the tests.  My heart went out to her.  She kept saying to me, “I don’t know how you do this”.  But experiencing one for the first time is an entirely different world than the world I live in.  It was a million times harder for her today than it is for me when Shelby has a seizure.  The main difference is familiarity.  I am quite accustomed to seeing seizures.  I still hate them and the havoc they wreck on Shelby and our family, but the extreme panic and fear are no longer there.  Unfortunately, after only one seizure, it is often times impossible to pinpoint the reason for the episode or predict whether or not it will happen again.  The anxiety can be excruciating.  We may not know what will happen tomorrow, but we can count on the promises of God.  “Jesus Christ the same yesterday, and today, and for ever.” Hebrews 13:8  

My first prayer for this little girl is that she would be well and that she would never experience another seizure.  But even for Shelby I have the hope and promise of wholeness.  “For I will restore you to health and I will heal you of your wounds,’ declares the Lord,” Jeremiah 30:17a  If not in this life, then in the next, her brain will work exactly like it should.  She will be able to dance in the presence of Jesus and sing and shout her praises.  And I will be there to witness it.  Oh glorious day!  

My second prayer for my sweet friends is rest.  Emotions are high.  Bodies running on adrenaline have trouble relaxing.  But God can comfort and bring tranquility where there was turmoil.  My prayer tonight for all my friends dealing with seizures is Psalm 4:8 “In peace I will both lie down and sleep, for you alone, O Lord, make me dwell in safety.”