Lauren Sparks

The Sparks Notes

One Night with Dravet Syndrome

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 Posted by Lauren Sparks on September 23, 2013 at 3:20 PM Delete 
I went to bed at 10 last night.  That is a little earlier than usual (not much though), but my husband was out of town on a business trip and I knew that I was parent on deck for 4 nights in a row.  Shelby has been having a lot of nocturnal seizures lately.  Many more than usual.  I had her scheduled to see her neurologist this morning to discuss the changes and any options we might have for changing medications, but he had his own family emergency and had to cancel the appointment.  I am still waiting to find out if we can get her in to see someone else quickly.  Her “new normal” pattern has been to show up in our room between 2 and 4 am, either get in the bed with me while Chuck goes to the guest room, or Chuck takes her with him to the guest room (we alternate).  Then she will proceed to have from 2-6 seizures before our 6am alarm to get ready for school.  Dravet must have a sixth sense that I am a single parent this week, because Shelby showed up in my room at 11pm.  I wish I could have seen into the future and gone to bed at 8:30 after tucking the kids in bed.  After getting her back to sleep with me, she began to have seizures.  She would stiffen, jerk and shake to an upright position, then take several minutes to relax enough to lay back down.  Then she would talk and ask to get up and play.  I would hold (a.k.a. cuddle) her down until she would dose back off.  Then it would start all over again.  14 times this happened last night.  I can’t begin to tell you the misery.  Frustrated with a talking child and a full bladder, I got up to go to the bathroom at one point and couldn’t believe it was only 2:15am.  It felt like I had been battling this monster for hours and I wasn’t sure how I could continue to do so for another 4.  I yelled at Shelby – for something that she has no control over.  It’s not pretty over here when I’m exhausted.  Dravet 1  Mommy 0.  I wish I could have read her mind.  Was she so resistant to sleeping because she KNEW that as soon as she dozed off, another seizure would come?  Or did her brain just feel “wired” and she thought it was time to be up?  I kept trying to get her to sleep, knowing that we both needed it and hoping that this time, no seizure would come and we woud both rest.  About 4:30, I felt like I was starving.  It was no where near breakfast time, but I had been up for hours.  I considered getting up for some Cheetos.  I thought better of it.  That wouldn’t help anyone.  Reason won out.  Dravet 1  Mommy 1.  I continued the fight for sleep.  I finally gave up my quest  about 5:45am.  I let her get out of bed and leave the room.  And I slept – uninterrupted – for 10 whole minutes before my alarm went off to start our day.  And even though the score reads 1 to 1, I assure you that there are no winners here.  

Throw Pillows and Job

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Posted by Lauren Sparks on September 9, 2013 at 6:10 PM  I can’t remember if I have already shared with you that I am reading through the Bible chronologically this year with my church family.  So you are either hearing it again, or for the first time.  Yesterday, I started reading Job.  This book is an interesting read for anyone who has ever wondered why bad things happen to good people.  I want to preface my next statement by saying that I, in no way, would compare myself to the righteous Job.  And I don’t think I would have handled his tragedies half as faithfully as he did.  In fact, I don’t possess a scientific mind at all, but I’m pretty sure that in his shoes I would have been able to figure out how to invent Prozac or Zanex or some similar pharmacology to cope.  But when Shelby was younger and her condition was even harder to manage than it is now, I was often asked how I could hold onto my faith throughout the bad days (and there were more bad than good then).  In Chapter 2 of Job, he tells his wife that we can’t accept the good from God and not the bad.  That is how I feel.  Hardships are part of living in this fallen world and who are we to decide who is deserving of them and who is not?  I just don’t believe that’s how it works.  I do remember getting mad at God once.  One time in the last 13 years do I remember thinking that something was His fault and He could have done something to stop it.  Shelby was having another seizure.  Nope, that’s not what I got mad about.  Shelby was using a walker back then because of difficulty getting around.  So when she started seizing, I hoisted her on the little seat and was pushing this walker down the bumpy side walk to home as fast as I could go while trying to balance her body so she wouldn’t fall over.  And right about the time I was sweating bullets and wondering if I was going to drop her, a bird pooped on her head.  Yep.  That was the last straw for me.  It seemed like more than our fair share at that moment.  But I believe that God simply forgave me for forgetting about all the other things he was doing to care for us.  I don’t think God minds at all when we are mad at Him.  As long as we are still talking to Him about it!

In our life with Dravet Syndrome, the issues aren’t always so dramatic as that one.  Do you want to know what is bothering me right now?  I can’t have throw pillows.  This is top of mind for me right now because I am redecorating my den, and I can’t have throw pillows and other decorative things that other people take for granted because Shelby won’t leave them alone.  She will constantly throw them on the floor (because although she does understand “no”, she doesn’t have the capacity to remember from hour to the next what the “no” was referring to).  I will constantly pick them up.  They will be an ongoing source of frustraton instead of a cute accent.  In the “Job” scheme of things, throw pillows are small.  But I am thankful that not all facets of this Syndrome are monstrous.  Some are devastating.  Some are merely annoying.  But if we put our faith in Jesus, we have a promise in 2 Corinthians 4:17.  “For our light and momentary troubles are acheiving for us an eternal glory that far outweighs them all.”  We will all go through seasons where our troubles are “throw pillows”.  Annoyances.  Minor difficulties in our otherwise good days.  And we will have times of “seizures and bird poop”.  Times when we feel like we’re drowning with no one to help.  Sometimes we won’t even feel like God is there.  But He is.  And He promises us that our troubles are “momentary”.  They won’t last forever.  “So fix your eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”  2 Cor. 4:18

Dramedy of Errors

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Originally published Sept 23, 2013

Chuck had to work today.  That is unusual for a Sunday, but he was in charge of 1st of the month inventory.  So the girls and I went to church without him and he agreed to pick up a few things we desperately needed from Sam’s before he came home.  He texted me while still in church to say that he didn’t have his wallet and would have to drive home and get it to go back to Sam’s.  Then he texted me from home.  “My wallet must be in the console of your car.”  Sure enough.  So after church we went back to pick him up and we all got a quick bite to eat before shopping.  Chuck decided to drop Allie and I at Target and take Shelby to Sam’s so we could get more done at once.

I need to preface the next part by saying that we have a car that is much smarter than we are.  It is a keyless entry and ignition.  As long as the key is in your purse or pocket, you don’t need it to open the doors, lock them or start the car.  Most of the time, I love the convenience of this.  Often, Chuck doesn’t even grab his key to the car when we are together, knowing that mine is in my purse.  This was the case on our outing today.  So when Chuck dropped me off at Target, he drove away without a key to the car he was driving.  He didn’t have a problem getting the mile away to the Sam’s club parking lot, but when he tried to start the car back up, it wouldn’t start.  So he is stranded a mile away from me in 100 degree heat with Shelby and no wheelchair in tow.  I am at Target with Allie, a basket full of home goods and the key.  Chuck tried calling road-side assistance.  There was nothing they could do.  He tried to reach a taxi service and struck out.  Finally, he explained his predicament to a manager that was in the Sam’s club (thankfully it happened there and not at another establishment) who loaned him her car to drive over to Target and pick us and all of our purchases up to bring back to my car.  And what do you know?  When me – with the key in my purse – got in the car, it started right up!

I have no moral, lesson, or bible verse.  Just had to get that out and hope our redonkulous afternoon gives you a giggle.  

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