"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 25, 2012

Firefly Friday. Stairs.

I realize it's been a long, long time since I've done a Firefly Friday post. I could say its because things have been going so well with Firefly that I haven't felt the need.

Or not.

I could say that I've said everything I feel like I need to say about our journey, our highs and lows, our roller coaster ride.

Or not.

I could say that I've just been too busy.

OK, that one might actually be true, but it's still not a good excuse.

I think the reason is actually two-fold. Or more, now that I'm really sitting down and forcing myself to think about it.

I've been getting some feedback from these posts, you see. People have been coming up to me around town at homeschool events and sharing their own stories. Things they have been going through. They thought they were all alone. They thought they were crazy. Or maybe just their kids were. They thought they were bad Mommies. Ummm, yeah. I so know that feeling. All of those feelings.

All of a sudden, I felt like I had to be the expert. I had to have the answers. I had been living with a child with Sensory Processing Disorder and had had the nerve to write about it. PUBLICALLY! Surely I must know what I was doing.

And, to those of you I have been talking to, I know you weren't looking for me to have all the answers. You just wanted to talk and have someone validate you. I know that feeling too. I just felt like I should have had something else to offer you.

So I'm going to go ahead and take that pressure off of myself right now.

I. Am. Not. An. Expert.

 Man oh man do I wish I was. Most of the time I have absolutely no idea how to successfully get through the day with my daughter. I continually feel like I should have more of a clue than I do. After all, we have been dealing with this SPD "cloud" for nine years. Nine years! How can I continue to be so dumb on the subject I have been hosting in my home for nine years?

Yeah, I know.

So that self-imposed pressure, coupled with my lack of knowledge, is one reason I haven't been able to get one of these posts written in a while.

Another is because I know what I have to write about next, and every time I even think about it I want to throw up.

And I really, really hate throwing up.

Now, let me set the stage here, so you might understand just why I feel so sick inside.  See, in case you are a new follower, we moved into a new home about two months ago.  It's beautiful, we love it, it's our dream home!

And it has stairs.

Twenty-three stairs, to be exact, as Bug has repeatedly told me.  Twenty-three stairs with a landing there in the middle.  Wooden stairs.  We didn't want carpeting on the stairs because it would be more slippery.  (And who am I kidding?  Much harder to clean, ha!)

The day we moved in we almost lost a mover as he dropped a dresser on himself as he was going up those stairs.

Our dog, Max, went up the stairs to check out the house and couldn't come down for about four hours, until he figured out how to do it!

Stairs are slightly uncommon in our neck of the woods.

So when we moved, we made sure to make a big deal out of the "stair safety rules".

No running on the stairs.

Always feet first.

Watch out for the animals.

Make sure to watch where you are going.

Most of these rules, mind you, were for the five year-old.  He is the one that should be the more impulsive, the less experienced, the less athletic.  He is only five, you know.

We did have a minor accident or two on those stairs in the first week or so.  Turtle tripped as she was running (see?  don't run on the stairs!) up to her room.  Bug hit a step too close to the edge and bonked his bottom.

And then.

I was downstairs, washing dishes.  The kitchen is just about at the bottom of that staircase, after the landing.

I heard lots of thumping.  Little thumps, one big thump, and then nothing.

No crying.

Just a scream.


And the sight that greeted me when I ran around to the stairs was Firefly's laundry hamper, lying on the landing.

And Firefly had zipped herself up in it.

And thrown herself down the stairs.


Do you understand the nausea now?

The emotions, thoughts, feelings that came rolling up from inside me when I saw that still hamper continue to make me feel ill.

What on earth was she doing?  Is she OK?  Will she be OK?  What is the matter with her?  Did she give herself (another) concussion?  Why wasn't I paying attention?

How. Does. She. Not. Know. Better???!

Our staircase is beautiful.  I found a picture of it in a magazine, gave it to my builder, and she had it made just the way the picture looked.

I love our stairs.

But it's hard for me to look at them now and not see question marks in my head.  Not feel some guilt, remorse, shame, confusion, anger.

Those stairs are a tangible reminder that my daughter has a disability.  Again, it is an invisible disability.

You cannot look at her and know she has it.

There are some days when we can almost forget.  We can almost leave her to her own devices upstairs while we are trying to do some chores downstairs.

And then, there are some days when we just can't.

She didn't know better.

Or, rather, she did, but it didn't matter to her.  She only had the overwhelming urge, at that time, the drive, to FEEL something.  She thought it would be a great idea to zip herself into her hamper.  Actually, she does this a lot.  She likes to be enclosed, and then when she rolls around on the floor inside the hamper, she gets a lot of sensory input.  It feels good to her.  It calms her.

And this time, to up the ante, to FEEL more, she thought she would take a ride down the stairs.

It was terrifying, sickening, shocking to me.  The what-could-have-been has woken me up out of a sound sleep more than once.

Which makes sense.

It was a wake-up call, of sorts.  It woke me up.  It reminded me to remember--ALL the time--what she is struggling with.  It reminded us as a family to not take safety, common sense, rules for granted.

They are not common sense to all of us, all the time.

It reminded us to thank God for all of the ways He has kept us safe.

And maybe, just maybe, it reminded Firefly to be wary on the stairs.  To step more softly, more cautiously through her days, through the minefield of challenges that she navigates all the time.

Sensory Processing Disorder is a tricky one, guys.

Thank goodness we still get to live with it.

- Posted using BlogPress from my iPad


  1. Thank you for sharing - and I'm sorry it took me this long to read your post. Life has been crazy with Gavin out of school. I appreciate reading your insights - especially coming from a mother of a child who has recently been diagnosed with SPD. It is overwhelming - and even though you have years of experience the thing is that your child is growing and changing and what they are experiencing now is changing how you deal with them. My heart goes out to you.

    I remember the first time Gavin did something that could have been life threatening. He could get out of the house at two. He was curious about the train tracks. I heard honking and although he didn't get out of the front door (and I thought the back door was closed) I just had that sickening mothers intuition. I rushed out and there he was on the road - with a long line of cars stopped. Thank goodness. It has been almost three years and I still have nightmares. He still doesn't understand why he can't go out the front door to ride his bicycle without mommy. He just doesn't get it. Even now, three years later I still panic when I hear a car honk out front - even though we now have a fence in the backyard and chain lock on the front.

    1. Genevieve, thank you so much for your kind words. It's really wonderful just to hear from someone else who understands--as much as we can understand--what these kiddos are going through. I truly understand the nightmares!

      Praying for your family (and your sanity with your son out of school for the summer!) Take care...



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