Stuck in a Rut…Thinking Moms Revolution

Stuck In A Rut

(I will preface my response to this Thinking Mom’s post by saying Jackson is worth all this hand work we’ve put in.  If him getting healthy requires 2 more years of this treatment and lifestyle, I’m in.  I will do anything for Jackson.  That being said…)
This Thinking Mom took the words right out of my mouth (read her post below).  These past 5 months have been anything but glamorous.  I wake up every morning to the same routine, in my own little recovery world.  My focus right now is Jackson.  Days are spent squirting medicine, crushing pills, making coconut yogurt concoctions, ordering/picking up supplements, scheduling appointments, going to doctor’s appointments, grocery shopping, cooking GFCF, researching new treatments, doing household chores and getting on the floor to play and sing songs with Jackson.  To any of my friends and family out there who haven’t heard from me in a while, hello, I’m still here, and sorry for not being able to hang out and chit chat.  Misha and I are lucky to steal a few hours for ourselves for a date night.
Many ask, “are you doing anything fun this summer break?  Any vacations?”  Hmmm….packing up all the medicine, cooler full of Jackson’s special GFCF food, portable crib, stroller, special blankets and all the little things that come in a day’s work with Jackson is a lot…too much.  Not to mention that Jackson cannot follow instructions and doesn’t understand danger, so traveling with him is a full time job and anything but relaxing.   At the moment, we’re housebound.
Later this month, I’ll be going back to work to get my classroom ready for the incoming First Graders.  I’m excited to again have something that is mine, an outlet where I can get out and do something I’m really good at…teach six year olds.  I’ll still be fully involved in Jackson’s daily routines, but me getting back into the “real world” will be good for everybody.
Please read the post below.  I’m tired of Autism/Lyme Disease (whatever it is) too:

I have to admit, trying to come up with a blog post this week has been really hard.  I generally like to keep things positive and hopeful, but I’m not feeling it this week.  The monotony of life has caught up with me.  Remember the movie Groundhog Day?  Lately, it feels like I wake up every morning to Sonny and Cher, “I Got You Babe” on my alarm clock radio.  What’s that saying–same sh*t, different day?  That about sums it up.

I’m tired of supplements.  I’m tired of thyroid medication.  I’m tired of insulin shots.  I’m tired of seizures.  I’m tired of having to teach little things over and over.  I’m tired of seeing my son struggle to communicate.  I’m tired of hearing about my friends typical kids hitting every milestone so effortlessly.  I’m tired of waiting for the day when my son has his big breakthrough. I’m tired of reading articles in medical journals until my eyes are blurry.  I’m tired of the doctors not giving me decent answers.  I’m tired of not being able to go out on a date with my husband.  I’m tired of not being able to spend money on a cute pair of shoes. I’m tired of having to be responsible 24/7.  I’m tired of feeling like an on-call nurse.  I’m tired of being tired.  I’m tired of Autism. (sigh)

I know some people are reading this and I must sound completely horrible. Some days I feel so ready and prepared to slay this beast armed with my latest arsenal of knowledge on a new treatment or supplement.  Other days, not so much.  My son slipped away into Autism virtually overnight.  Why was it so easy to descend into Autism, but so damn hard trying to get out?  Why can’t those asshats at Big Pharma just come out with an Autism vaccine already?  (Insert sarcasm here)

Not only am I tired of Autism these days, but I’m mad too.  I’m mad that my son can’t go out on a hot summer day and jump in the backyard pool and run and play all day like regular kids.  Why can’t he?  Blame it on the usual suspects, he has low muscle tone, reflecting light off the water can trigger a seizure, excessive heat can trigger a seizure, too much activity can cause his blood sugar to drop too low–the list goes on.  His sister loves to swim, and play on the swings, and climb trees and roll around in the grass.  She desperately wants her brother to join her.  In her exuberance to include him, she excitedly gives him too many directions at once and he gets frustrated, she then gets frustrated, and then we all get frustrated and meltdowns ensue.  It’s exhausting.  And I’m tired of it.

So I decided to throw myself a pity party and wallow away in my sorrow.  I tried to convince myself that recovering my son from autism was too hard.  Maybe I should just start accepting the fact that this is the hand we’ve been dealt with and our lives would be easier if we just accepted it and moved on.  This mountain is too big and I don’t have the energy anymore.  The thing is, feeling sorry for yourself doesn’t do the dishes, or do the laundry, or cook dinner, or give the medicine, or do the schoolwork.  And it certainly doesn’t recover your child.

You can just imagine what a joy I was to be around.  I was so miserable I didn’t even want to be around myself.  I ended up hopping on Facebook to catch up on all the PMs I had been avoiding.  Scrolling through my News Feed something caught my eye.  It was a mom on my Friends List who I’ve never met in real life, but have known for awhile now.  Like my son, her daughter has autism and is nonverbal.  This particular day was a very special one for her.  Her daughter was interacting and participating in a simple family activity, something that is so commonplace to most, but to her it was huge.  Her daughter was INTERACTING AND PARTICIPATING!  She was looking in her mother’s eyes and WANTING to play and ENGAGING her!  That status post on Facebook took my breath away.  No matter how tired I get or frustrated I am, hearing about a breakthrough from one of our kids literally is like oxygen to me.  It gives me hope, it gives me strength to continue the fight because I know our kids can improve.  That pity party for myself ended pretty quickly.  All I could think about was that precious girl sharing such a spectacular moment with her family.  It brought me to tears because I could feel all the emotions that her mom was feeling, especially all of the the LOVE!

I may get down in the dumps sometimes and want to give myself that pity party, but that’s okay.  Being the parent of a child with special needs is extremely difficult.  It’s setting out into unchartered territory with no map, no compass, no sense of direction, nothing.  It’s a learn-as-you-go rollercoaster with some huge ups and huge downs.  I’m starting to learn that it’s okay to feel down sometimes.  Autism is OVERWHELMING!  Some days you need that glass of wine and your own little pity party.  Some days you have to dig deep to keep going and push through that Groundhog Day.  Some days the rollercoaster gives you a break and you only have huge ups and no downs.  You have to remember those days and savor them because when my son has a good day, it’s a GOOD DAY!

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