Jesus take the Wheel

Becoming a parent is a wonderful, exciting time.  Thankfully, most of us have healthy (physically & mentally) children.  Most of us Mama & Daddy’s do not even think about something being wrong with the baby, but when there is, your whole world is changed.  The feeling is indescribable.  For me, the feeling was like complete desperation & that desperation has not eased up.  That feeling gnaws at the very core of your soul, slowly eating away your spirit.  Taking care of a person with mental disabilities changes you, morphs you into a person unrecognizable, makes you mean & cold.  Now I assume I am not speaking for everyone & if you don’t fall into this category, bless you.  A friend said it best & I never thought of Jack in this way, but caring for him is much like caring for a newborn, a toddler, & an eye rolling, hormone-enraged teenager-all this for ONE person…Jesus take the Wheel!

Never being much of a morning person, I often wondered why the term ‘good morning’ was used & I’m still left wondering why!  Let me give you an example of the torture I endure every.single.morning of my life.  First off, Jack didn’t go to sleep until 2:30am & that was with double melatonin & a prescription sleep aid that was given at 10:45pm.  He even called the house at 2am to ask me to come to his room to tell me he couldn’t sleep, it may of been the music he was blasting us out of the house with that stirred him up-just a wild guess!  After settling down because I was mad, frustrated, & tired, I was able to sleep until 8:30am, a little over 5 hours of sleep, but that was not before being startled by his Amazon Alexa alarm going off-he set it to go off during his precious slumber.  Not to mention how he talks to Alexa.  He talks to her like Archie Bunker talked Edith!  I pure-tee hate that Alexa!  As previously discussed in one of my blogs, Jack talks in his sleep big time.  At 8:30 this morning, he screams ‘ouch’ in his sleep (never done that one before) & didn’t woke up until 11:00am.  He has now gotten into the routine of not wanting to take his morning meds.  I have to be extremely inventive; guess what drink is in this cup, guess where this drink came from, I’ll pay you (I’m running out of ideas & he is patience).

The next cycle is the music yet again.  Blaring music, singing songs (mostly Keith Urban), singing them as fast as he can, beating on tables, chasing me around the house literally to sing in my house, poking me in the stomach repeatedly.  This can go on for hours until that precious medication calms him down enough to secure him to his bed until around 10pm when the vicious cycle repeats.  Coleman walked in from school early this afternoon & Jack runs up to him & starts poking him in the stomach & tried to prevent Coleman from going to his room.  I had to intervene, Coleman has zero patience for him.  I was able to get Jack distracted with another Keith Urban tune.

Now the next thing is his desire to see Keith Urban in concert.  He is relentless in his efforts to get us to go.  We certainly would love nothing more than to be able to go & enjoy this with Jack, but the odds are against him.  See, Jack had to stop attending VBS, youth programs, church, birthday parties on account of seizure activity.  The excitement of going to these small, local events was too much.  Seizures always ensued.  He’s now bigger, harder to manage in a vehicle during a seizure event, & it is extremely difficult to get him to the car because he is so tall.  I am only thinking of trying to get him out of the arena in a decent fashion that is not going to kill Lee or myself.  There will be lots of walking & Jack simply can’t hang, but you can’t tell that hard head nothing.  So, all we can do is go & pray.  The concert is in the heat of the summer here in North Carolina in July.  Heat is also another seizure trigger for Jack, as is the time of the concert-evenings are trouble for him.

Around 2pm, Jack finally retreated to his bedroom for the afternoon where he is conducting his business of trying to call movie studios in Hollywood, CA to reach a Power Ranger actresses, calling Apple about some sort of iPad issue, & sadly, commissioning Alexa a.k.a. Edith to play every song known to man.  This child even setup his own Google phone number so he could call long distance since we don’t have that capability on our landline.  As I start my evening routine of making cobblers, dipping those fabulous chocolate covered strawberries, making fruit dip, interacting with Coleman or Ava, he starts.  When I show attention to something other than him, he becomes obnoxious & the cycle starts all over again.  He now wants me in his room starting at 11:30pm until the wee hours of the morning.  I am barricaded in his room for hours trying to keep him from roaming the house & disturbing the others too much.

There are mornings & evenings that I pretend to have an upset stomach so I can go to the bathroom & lock myself in to escape the loudness.  So for all you new Mama’s, enjoy your precious, healthy children-you have been given a gift.  Our gift was just shaped a little differently & behaves a little different, but a gift nonetheless.  We are still learning how to conform to this life, to the life of a medication resistant disorder.  There are so many pills to help so many illnesses, but not one magic pill to help these extremely difficult behaviors.  If you find yourself passing our home, passing The Berry Patch, or see us out & about, say a prayer for a sea of calmness to enter our home & please be praying with us for Jack to be seizure free before, during, & after the Keith Urban concert, & that Jack will turn that music down.  Thank you all for your support & concerns.

Until next time,

Amy

Author: dravetsyndromeblog

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

One thought on “Jesus take the Wheel”

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