Lauren Sparks

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 17, 2011

Yesterday was a lesson is helplessness and frustration.  I had planned to meet 3 friends from elementary school days at the museum with our kids to play and catch up.  2 of them were driving from Waco, so we decided to meet at the McDonald’s across from the museum first.  The girls and I set out at the designated time.  I got a text from one friend on the way that they were early and hanging out in the play area.  I got to the McD’s across the street from the museum and knew immediately that something was wrong.  There was no play area.  I called one of my friends and told her I was at the wrong place.  Being unfamiliar with the area, she gave me some markers as best she could, and told me she could see the museum grounds from where she was.  I set out again and drove blocks and blocks around the museum – seeing nothing.  I called my friend again.  She asked a restaurant employee for the address.  I put it in my GPS and headed out again.  The directions where taking me away from the cultural district – 3 miles away.  I knew this couldn’t be right, so I turned the car around again.  I stopped and googled “McDonald’s in Ft Worth” on my phone.  There was not one listed at the address I was given!  I was starting to feel like I was in the Twilight Zone.  My girlfriends had found this elusive place.  Why couldn’t I?  I called the museum to see if they could tell me where it was.  No luck.  I finally realized the problem.  My friends were at a McDonald’s across from the museum in Dallas.  I could not believe I had assumed the wrong city entirely.  So frustrated, I picked up lunch for the girls and I and headed across !-30 to the right place.  By the time we got there, we had been driving for 2 hours – approximately the same amount of time my friends drove from Waco!  I ended up spending more time in the car that day than I did with my friends before they needed to head home.  

There was a time during all this confusion that I felt helpless.  All my friends were in one place, and despite my best efforts, I could not seem to get there.  I have often felt this way as a mom.  All of my friends are at one place with their kids, but despite the best efforts of my husband, myself, therapists, doctors and educators, Shelby will never get to that place.  It is completely inevitable and unavoidable that we will all feel helpless at some time or another, and it feels intolerable because it catapults us back to our weakest, most vulnerable moments.  When Shelby had a seizure that lasted one hour and fifteen minutes, stopped breathing and was ventilated for 20 minutes – helpless.  When her implant because infected and had to be removed – helpless.  When the medications don’t even touch the seizures – helpless.  When she looses skills she had previously attained for no apparent reason – helpless.  I have learned that this monster of a feeling serves a pretty important purpose.  It challenges my childish wish to be the center of the universe.  It teaches me modesty and humility by reminding me that I am a mere mortal.  There may be many times I feel helpless, but I know I am never hopeless.  God is my ever present help in times of trouble.  When I am helpless, He is helpful.  When I am weak, He is strong.  And He has enough strength to sustain me no matter what the situation.  And God’s Holy Spirit is a much better guide than my friend’s directions or my GPS.  “Show me your ways, O Lord, teach me your paths; guide me in your truth and teach me, for you are God my Savior, and my hope is in you all day long.”  Psalm 25:4-5