My life…in song

I’ve always enjoyed music.  It speaks to me.  I can’t play music and I certainly cannot sing, but I’m an excellent listener!

We listen to KLOVE and Air1 in our house ( www.klove.com and http://www.air1.com)

Both are Christian hits stations, with Air1 being a little more “edgy.”  I truly believe God speaks to people through this music.  And during troubled times (and even good), so many songs seemed to be made for me.  I’m not emotional or sentimental really at all.  I don’t typically cry and hate the idea of crying.  But many a song has brought a tear to my eye.

The struggle with sick kids seemed impossible at times.  It wasn’t just me who wondered how I did it.  I had so many friends who’d tell me “I don’t know how you do it” so many times!  And often my answer was “I don’t know how I do it either.” 

I’ll get to this point eventually in the “Our Story” section, but this is what a typical day looked like in our house at the worse.

We’d wake up.  Kylee would complain about a tummy ache.  I’d fix breakfast.  At the height of the allergies, breakfast would be a bowl of brown rice or an unfortified rice cereal with unfortified rice milk and maybe some burgers for Weston (sort of pan boiled because if there was ANY brown on there that wasn’t consistent with the rest of the brown, he simply wouldn’t eat at all) and some strawberries.

I’d get Weston tube supplies ready and prepare his formula and get that all set.  We’d do some school and usually I had a screaming Trevor by 10am because he simply could not write.  Or concentrate.  Or think clearly.  Or remember things.  He might be throwing things, but at the very least, he’d be punching something in his room.  Meanwhile, Kylee would be crying because Trevor was scaring her.  While comforting Kylee, Weston would throw up.  That’s just what he was doing at this point.

I’d get up to get Trevor some hydroxyzine.  We finally found this medication helped a lot in his screaming.  And then head back to clean up puke.  This would bring me to lunch.  Except I forgot to make tortillas ahead of time since I planned on taco meat in tortillas.  Make lunch, go outside.  Struggle through school, clean up more throw up. 

Then Weston has to poop.  Somewhere in all of this sickness, it became painful for Weston to poo.  So I’d have to go in the bathroom with him and hold his hand while he made it through.  Sometime mid afternoon, someone would break out in a rash.  WTH?  Seriously?  Take pictures of rash, send to doctor.  Oh, now Kylee has a fever.  Ugh.  Email doctor again.  Give benadryl to rash kid (usually Trevor), give motrin to Kylee. 

Time to make dinner.  Very complicated with the slew of allergies, so it takes me a LONG time to make.  Trevor goes to neighbors’ to play and comes back a SCREAMING mess.  Just a mess.  Cannot control himself at all.  There was a fine line with him between control and his mind being completely GONE.

Dinner, bed.  Finally.  Somewhere around 11pm, we are woken up by Weston crying “bowl! bowl!”  He needs his bowl to throw up in.  Pukes, we clean it, back to bed.  3am he’s up again.  This time with liquid poop running down his legs.  We change his sheets, get him in the bathtub.  Except this woke up Trevor.  And he’s not happy.  4:30am, get everyone back in bed and back to sleep.

Some days were slightly better, some days were much much worse.  And in 2012, Plumb came out with “Need You Now.”  I remember MANY times this song coming on and I’d be singing it on the top of my lungs.  As if I could just sing it louder, God would hear me better.  Take a listen yourself

 

Life was so hard, just seemed so impossible.  Doctors weren’t helping.  We were too complicated.  Family didn’t understand just how bad it was.  When we talked to people, we just didn’t want to talk about it.  We wanted to be normal.  We were far from it and we knew it.  And Ian and I are fairly private people.  We really don’t like attention.  It’s uncomfortable for me.  And I certainly didn’t want to exploit my kids in anyway.  So when talking to family and some friends, we mostly just pretended to be ok.  We weren’t.  We were NOT OK.  And sometimes, when talking and pretending, I’d sing this in my head I’m Not Alright, I’m broken inside.  Just hoping that the person I was talking to would sort of hear it and hug me.

Many more songs defined times in my life.  I’ll be posting them throughout.  Because they say it better than I can!

Author: Nikki Sharp

Hello! We are a Christ following, homeschooling, fulltimev RVing family of 5. We escaped the horrors of a moldy home and are making a fresh start!

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