When Sleep IS the Enemy

The pre-Dwarf life of Snow White must of been wonderful, you know the part where she was asleep, of course I say this tongue & cheek.  In fact, my life bears striking similarities to Snow White & the Seven Dwarfs.  Let me explain.  I am Doc-received my MD right from my home through lots of personal experience, Sleepy (chronically), Grumpy (most of the time because of Sleepy), Happy (it’s in my genes thanks to my Mama & Daddy), Sneezy (do it all the time), Bashful (at times), definitely not Dopey…but maybe I should be considering how life is currently going.  (Insert laughing face emoji, lol).  Kids with Dravet Syndrome have severe sleep issues.   So severe in fact, that Lee & myself have not slept well in 16 years.  There have been varying stages of sleep issues that Jack has been challenged with during his 16 years.  I was a nursing mama, Jack only ate from his nursing mama, refusing a bottle with mama’s milk, all feedings were left up to me, which was fine until 6 months of age when Jack’s seizures started.  Taking care of the boys so close in age was not that big of a deal, I guess it was because there were bigger fires to control.  Coleman was such a big help to me even at the age of 2.  If I was feeding Jack or tied up doing something, Coleman would fetch whatever I needed.  Whether it was the phone, a burp cloth, blanket, whatever.  He was & is a true blessing!

The seizures that struck Jack at 6 months old, interfered with our sleep tremendously.  When Jack slept (which babies do a lot of), whether it was a nap or nighttime sleep, he would wake up in clusters of seizures.  These clusters would last anywhere from 20 minutes to two hours, having literally 100’s of them in each cluster cycle multiple times a day & night.  Once the seizures calmed, he was exhausted & back to sleep only to repeat the process over & over & over again.  By this point, I was exhausted from being the mama of two babies.  I was the one to get up with the boys most of the time because Lee worked everyday in order to support us & the growing amount of medical bills we started to incur.  His days were typically 5am-7pm.  Someone had to be somewhat well rested!

Fast forward to the toddler years, I found out I was pregnant with Ava.  It was during this time that the ketogenic diet (the seizure treatment Jack was on with 100% success for 2 1/2 years without any seizures), that the diet stopped working & the seizures reached one of their worse peaks.  I was blessed with perfect pregnancies.  Only gained like 16 pounds with them all & they were all big with Coleman weighing nearly 10 pounds, never had morning sickness, I was just dog tired during my nine month terms.  So there’s that, no sleep & seizures all the time day & night & chasing after two boys while waiting on our princess.  That was my life.  Ava was just like Jack in that she only would take mama’s milk directly from mama’s milking station-there again no sleep!  She really was a great baby.  Ava did not wake up all the time eating like Coleman & Jack did, slept great, was happy, she adapted well to the chaos that was our life & still does adapt well.

Now why I say sleep is the enemy is because it is true.  I could not even begin to count how many times we have been woken up in an emergency type situation, rushing Jack to the ER or with him seizing in the middle of the night.  The amount of times I’ve changed bed linens during the night due to Jack losing bladder control during a seizure far outnumber the times most people even change their sheets in a year.  And if these things aren’t bad enough, it is always something if I am trying to sleep.  Let me give you some examples.  If I am trying to nap, the phone always rings.  I finally started taking the phone off the hook.  If I am trying to nap, the doorbell is going to ring & it is almost always some sort of solicitor or nutcase.  I absolutely dread Saturday’s because this is when they start prowling.  It’s like we have a sign visible to only those that are lunatics that says “Welcome, now accepting applications”!  Most recent was two known town junkies stopped by to see my husband.  Knowing Lee has never had any involvement with these men so I called him-Lee went & found them, they wanted to earn $20.  $20 is the magic number here at our house.  Had a neighbor man walk to the house twice in two weeks wanting to borrow $20.  Now, I was generous the first time, but not so much the second.  Once, I had an older man spin into the yard on two wheels dressed like pimp donning gold chains & even carrying a Tupperware glass of tea!  I closed the door in his face & did what any Southern gal would, called all the neighbors, took a picture of his car & posted it on Facebook to ask if anyone knew him.  He sped off like a bat out of hell, but I properly investigated him.  I still have no clue what this man wanted, but I at least know his name, license plate number, & who his mama is!  All of these moments all occur while I am laying down!  Now wouldn’t you think to yourself, why is it Lord that I am not supposed to be napping?  Every single time I lay down & am awakened, I say, “I don’t know why I even try!”

Current day status with Jack’s sleeping habits are some better for him.  His room is equipped with a baby monitor so I can hear every peep made & believe you me, I do!  From the creaking of his bed every time he turns over, to the severe talking and/or singing in his sleep, I hear.  Jack does not just use a few words, he talks in chapters all night long.  It is highly disruptive to us all because it is like he is having a loud conversation with someone & sings the whole song of whatever tune is spinning on his turntable.  Then when he wakes up, it is on!  He is back to his bull-in-a-china-shop phase, running through the house horse playing.  Think of the most annoying boy in your 5th grade class or think of Richard Simmons on steroids bouncing through the house, poking me in my stomach, being just plain silly-it can be slightly aggravating, but it is better than some alternatives that we have gone through, so I will gladly take it!

I am not kidding about the sleep interruptions.  Seriously people, people will not stop worrying us.  Folks still ring the doorbell even when the doors are all closed & the curtains are pulled.  That is a sure enough sign I would think that these people are still asleep!  Now this does not include family or friends so do not get offended if you are reading this!  I enjoy the company of people I know & like-really I do!  This blog is only meant to explain the bags under my eyes, my frequent yawnings, & to describe how something that is meant to be so peaceful & relaxing has turned into a curse-enjoy!

Author: dravetsyndromeblog

44 year old Mama of three kids, wife of a farmer, & business owner.

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