The In-Between

Sitting. Waiting. Pacing. Sitting. Waiting.

Here we are.

Tucker is having some minor surgery this morning.  It shouldn’t be a big deal-he has a nasty, non-working vein in his left leg (otherwise known as a varicose vein).  It could be an anomaly.  It could be something.  We’ll find out soon.  Sitting in the in-between.

He refers to it as his, ‘Old lady surgery.’  We have his Grandma to thank for that one…lol.

I sent my husband a message earlier in the week, ‘I get why he asks all these questions…but it’s driving me batty.’  This week I’ve felt a lot of time in the in-between.

How long will the surgery take? I don’t know.
Are they going to put on a mask and make me go to sleep? I don’t know.
Will I have to have a shot? I don’t know.
When will I be able to play football? I don’t know.
Will I be able to run by Monday? I don’t know.
Where did Dr. J go to college? I don’t know.
What type of food do they eat in Sri Lanka [where Dr. J is from]? I don’t know.

And finally…

If my body just absorbs the bad vein after the laser kills it, will I poop it out? No, definitely not.  My very rudimentary understanding of the human body allowed me to answer that question.

I know why he asks all of these questions.  He hates the unknown and herein lies the difference.  Lots of folks hate the unknown, but can still move on with their daily life.  He cannot.  He gets stuck.  We get stuck.  In the in-between.

Not knowing is paralyzing him.
Not knowing the answers is paralyzing to me.

His life has been my life.  I’ve always been a step ahead of him; knowing the answer, advocating, and being able to provide full explanations.  But not this time…this time I just don’t know.  I’m caught in-between.

In-between.  He’s frustrated that I don’t know the answers.  I’m frustrated that he’s asking questions I don’t know.

It’s likely a sign of things to come.

My goal has always been for him (and any of my children) to learn to advocate for himself, to learn to ask the questions he needs answered, to know what he needs to be successful.

He’s off his IEP and we’re moving to a 504 plan (which I’ll cover in more detail later). The focus of the 504 is on accommodation instead of modification.  It makes sense in this natural progression.  It’s the in-between.

Accommodation.  In-between modifying life and fully experiencing unadulterated life. It’s the moment you hope for – and dread – all at the same time. Modifying life is much more safe…but then I remind myself the advice I give to my graduating students.

‘The fence is the worst place to be. Make a decision. Even if you land on the wrong side you’re moving.’
‘Failure is good and necessary. Success is sweetest once you’ve failed.’
‘Rainbows occur between storm and shine.  Enjoy the view.’

It’s a heckuva lot easier to give that advice to others than to inherently know that it applies to your child…and you.

It’s 10:35.  His appointment was at 10:30.  Here comes the storm of questions.

Sitting. Waiting. Pacing. Sitting. Waiting.

Here we are.

10:51.

I’m not sure there is much worse than being off schedule with a spectrum kiddo.  Oh wait there is.  Being off schedule for something you don’t know much about.

We were instructed to bring one of the prescribed Valium. I’m beginning to wonder if it is for me or for him?

Sitting in the in-between.  I guess I’ll try to focus on that rainbow until the sunshine appears again.

rainbow

Update:  The procedure went well and Tucker is already back to football practice!