"From the rising of the sun to the place where it sets, the name of the Lord is to be praised." Psalm 113:3

Friday, May 8, 2015

Firefly Friday...And Again...


I have so many, many feelings swirling through my brain as I sit down to type this.

I'm mad.  Upset.  Jealous.  Mama Bear-Angry.  Hurt.  Frustrated.  Irritated.  Exhausted.  Afraid.

I want to holler at the top of my lungs to anyone who will listen that This. Just. Isn't. Fair!!

And then smack myself for being a whiny, selfish lady.

So, let's just start here and see where we end up, OK?

My daughter is 12.  12.  She is finishing up sixth-grade.  She has a cell phone, has taken a Safe Sitter course, and can stay home by herself for short periods of time.  She can play soccer like nobody's business, and writes beautiful skits for her Community Bible Study class.

She is caring and warm and thoughtful and a champ at giving back massages.

But she STILL has Sensory Processing Disorder.

She STILL is medicated daily for the anxiety that can be so crippling that NONE of us can function to live our daily lives.

And she is STILL losing control.

And so am I.

For all of the occupational therapy, speech therapy, horse therapy, special diets, medication, counseling sessions, holistic healer-people, essential oils, vitamins, and on and on and on that we've tried, SPD continues to be part of our lives.

Every day.

And, true, as she has gotten older, and as her siblings have gotten older, and her parents have gotten better at figuring this all out, SPD has gotten slightly less intrusive in our lives--unless it's just that we've gotten so used to its presence that we have adjusted...


Then we have a day (who am I kidding--it's been like two weeks now) when it all comes screeching back into focus.

A scheduled playdate that never was... (even though I knew better than to set one up with this particular set of friends)

Bedtimes that got away from us because of late soccer practices (and she's so much better settled when she's playing soccer--but not so much when she's tired...)

A typing class that's "hard"  (defined as tough on those fine motor muscles, almost impossible to ace immediately, and forced time to sit and look at a computer screen)...

And math.  Let's not forget math.

And now we have a crabby, bossy, argumentative, and yes, even tantruming Firefly on our hands.


And my mad comes from the fact that:

1.  It's. Not. Fair.  To her, to her brother and sister, to us as her parents.  This sucks.  It sucks that we have to live this life day in and day out and walk on eggshells, like we have for 12 YEARS.  I hate it.

2.  I'm a whiner.  I know, completely get it, that there are SO MANY worse off than we are.  We are very blessed and so very lucky.  I told you I was a whiner.  And it makes me mad at myself.

3.  I know better.  I know this is a fact of life.  I know there is nothing wrong with my daughter that I need to "fix".  I know it is what it is.  So why am I surprised when we have a flare-up or a reaction that I should expect?

4.  I respond to her behavior with anger.  Because I'm angry at myself and at SPD, it looks like I'm angry with her.  I am a grown-up acting like a child.  And it pisses me off.

I'm upset.  I hate to see her struggle like this.  I know she isn't acting out of hate or disobedience.  But still, this is behavior she's going to have to get under control.  Especially as she's growing. But, ugh...it's so...

Exhausting.  For her and me and everyone else who has to be around us.  Did I mention it's been 12 years?  That's a long, long time.

It's so very tiring.

But you know what?

I am a follower of Christ.  I am a believer in God, and God told us that the road would not be easy.  He made sure we knew there would be adversity and rough times and hardship.

Hardship.  Now that's a word that sums it up pretty well.

And through the hardship, God promised He would walk with us, would carry us if we need it.  And God's hands are big enough to carry me, and my Firefly, and her brother and sister, and dad.  We can rest while He carries us, and we can renew our strength.

To fight some more tomorrow.


  1. I love this because I often feel the same way. I have a 3 year old with SPD and it is an exhausting and infuriating disability. I especially hate that other perceive her as spoiled brat and me as a pushover because SPD doesn't come with an obvious sign to outsiders. Know that you helped me from falling apart today. It's been a rough one.

  2. Wow, I am in tears. We are struggling with our 7 year old. She was diagnosed with SPD at 4. We did the usual, OT, etc. In the past 9 months her OCD and anxiety has snowballed so out of control that our usual bright, outgoing, rambunctious hurricane of a girl is having panic attacks at school and generally melting down when getting ready to go anywhere. Our holiday break was miserable for everyone, including our 3 year old who wonders why her sister cries all the time or is sreaming again. We just started the medication journey and haven't found anything helpful yet, but still in the pursuit of something to help with her struggle. I so appreciate your honesty with your feelings in this post. They are the same thoughts I have as I cry myself to sleep every night. I hate this life, this isn't fair, I suck as a mom, we are all miserable bc of her etc. Then I hate myself for it. I hate that other people are living through this, I hate you have lived with this for 12 years, but at the same time, I can't tell you how much this post means to me when nobody else in my life besides my husband has a clue. Nobody gets it.



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