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Peddling Uphill

November 12, 2015 by Lauren Leave a Comment


I am about to show you how out of the loop I am – in case I haven’t made it abundantly clear already. Have you seen these bikes?  All over the place?  It seems to be the only type of bike boys ride these days. These type bikes are intended for BMX. Racing on uneven surfaces and for tricks. Jumping dirt hills and feeling RAD. This bike is supposed to make it happen. But I don’t see kids performing tricks, I see them riding these bikes to school. And it looks hard. As someone who has taught indoor cycling for 10 years, all I can see in this picture is the small distance between the seat and the pedals. I have been trained to teach students where to place their seats and handle bars for the most efficient and safe pedal stroke – and this is not the height!  When you only have a slight bend in the knee at the bottom of your rotation, you pull in more muscles in the leg to help you push and reduce the wear and tear on your knees.  This morning, I saw 2 children riding up hill to school on these bikes.  They were sitting in the saddle with their knees practically bruising their chins with each pedal stroke.  It not only looked hard, but ridiculous.
Sometimes dealing with the ins and outs of Dravet Syndrome can feel like cycling up hill.  Even though we are heading some where, it’s really hard.  I’m so thankful that I am fitted with the proper equipment for the battle (Ephesians 6:11-17).  You see, walking daily with our Heavenly Father is a lot like having the right fit on your bike.  The climbs are hard, but because you have spent time on your knees and your feet are fitted with the Gospel of Peace, you are in the proper position to endure.  I honestly don’t know how others survive anything as trying as a catastrophic illness without the peace that comes from knowing Christ.  My heart goes out to the famiiies I see posting on social media about a difficult turn of events and asking their friends to send out “positive thoughts”.  Although a nice idea, what good can that do anyone?  That is like spinning your bicycle wheels and going nowhere.  But prayers?  My God can answer prayers.  Not always exactly as I would like, but he responds to the requests of His people.  And that simple fact has been more comfort to me than anything else in my life (family, friends, doctors or medicines) since the day Shelby had her first seizure.  Do you know that kind of comfort and peace?  Even if you aren’t struggling with an ill child, you can’t live on this earth without your fair share of troubles.  Do you know that no matter what happens in this world, God Almighty holds you in the palm of His hand? As you fear for your child’s life or think of your own mortality, what kind of assurances do you have of an afterlife?  If this brought up questions for you, please personal message me.  I don’t claim to have all the answers, but I know the God who does.  I can introduce Him to you and we can seek Him for the answers together.  Make today the last day you struggle up your hills alone. 

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One Night with Dravet Syndrome

November 12, 2015 by Lauren Leave a Comment

 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.  

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About Me

I love Jesus, my husband and caffeine. The order of these can change depending on how tired I am. When my two daughters, stepson, and 4 grandchildren get to be too much, I practice yoga. God graciously allows me to share our adventures, victories and flub-ups from my laptop. May He be glorified here.
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