Friday, May 1, 2015

Special or Not?

Today was hard.  A day in which I scrolled through the contacts on my phone, looking for someone to cry to, but everyone I would have felt comfortable doing that with was either working or busy with their own crises, so I turned it off.

Where we're at is a lonely place sometimes.  Or a lot of times.  Something I struggle with probably sounds ridiculous, but it's this.  Do my kids (Pip, and possible Abel) have special needs, or not?  Both parties, parents of typical kids and parents of special needs kids seem to think they look too good to fall into the special needs camp.  Maybe they do?

We hear how great Pip looks all the time.  

"He just looks so healthy!"  
"I can't believe how great he looks!"  
"So, he's not walking.  He just needs some more time."

Maybe I should take how great he looks as a compliment.  A tribute to how well we're doing with a difficult situation?  But how it feels?  If feels like it shouldn't be hard.  Like my exhaustion isn't legitimate.  Like the the fact that he has FPIES, takes in very little orally, and probably has cerebral palsy is completely irrelevant.

He does look healthy and wonderful.  Thanks to lots of prayer, energy, elemental formula, and a piece of silicone that's surgically implanted in his abdomen.  And he does need more time before he walks.  He isn't ready.  He just started crawling, and that takes lots of thought and energy for him.  He needs time--and more therapy.

And Abel.  Abel had a CT this morning of his sinuses.  It's thought that he may have inherited my structural abnormalities.  He was terrified.  So terrified.  His little body was literally shaking as he was finally forced into laying down once it became obvious he couldn't be talked into it.  They had me lay down on top of him and look at me.  I kept saying "look at me, Abel.  Look at me in my eyes."  Only Abel has a hard time doing that in the best of times.  He was trying.  Oh, he was trying.  But his eyes were everywhere.  He was trying so hard that his jaw was moving with the effort, so I eventually had to hold his chin, too.  He looked like a caged animal.  When it was finally over, and he was told he was all done he dissolved into uncontrollable sobs. 

Then later, I watched him "color" side by side with a much younger three year old.  She stayed between the lines and grasped her crayon close to properly.  I've seen children Pip's age hold the crayon better than Abel can.

I waver between feeling like I've failed miserably for not being able to get this child to focus long enough to actually hear what I'm saying and follow through, and feeling like I've failed miserably because something in his brain seems to causing his world to be overwhelming ALL THE TIME, and why can't I do something to help him with that?  Then I get overwhelmed by him, and we both end up in a puddle of tears.  We'll likely find out next month if he's actually on the autism spectrum.

We're too normal to be special needs.  Too healthy.  We look too good.  I hear how well I'm holding up all the time.  But am I?  I feel like I'm floating in my own world.  Someone else must be here, too.  But I sure wish that that someone's world would intersect with mine.

1 comment:

  1. You know, you can always call me and cry no matter what I have going on in my house. You may hear screaming, falling apart, and I think you may just see my laundry pile through the phone. But, I am always here for you.