Wednesday, March 2, 2011

Off Switches and Open Doors

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Where is mine? Where is my off switch? I feel like I don't have one when it comes to life these days. Unless I am physically away from Simon (and even then) I feel like I don't ever really get to let down, turn off, stop.

It's a problem. A big one in general, but I'm feeling it more these early days of March. It started to amp up this past weekend. Even with Jaime around, ready and willing (but unwittingly un-awares) I wasn't able to delegate and let go of some of the M-F details that I take care of. I couldn't help myself or my internal clock that tells me it's time for meds, time for a feed, time for homeopathy, time for food play, etc.

And that's how the week began and has progressed since. I am on a terrible auto-pilot. It's to the point that I almost cried when it was my Tuesday 'break'. I had no idea what to do with my 2.5 hours and seriously contemplated staying home (once Simon and Reagan went out to the park) and getting a jump on tomorrow's blended food prep, laundry loads, and calling pre-schools to see if they might be a good fit.

An internal slap to the face and I got out the door to see a bad movie.

But I am feeling a little in trouble here. Very alone and beginning what feels like one of the hardest months thus far. It feels like I don't even have time to reach out, make plans, problem solve. I am at the grindstone and I have to pace myself not to hit bone before this month is over.

*grunt* Laura hard like stone, but wearing a little thin *grunt*

Simon has his IEP (individualized Education Plan) meeting scheduled for the 23rd of March. At that meeting we'll know what sort of services, if any, our school district will be providing once he turns three. Best case scenario is that they will offer him a 5 day a week class that will support his language delays and offer additional occupational therapy within that class time. It would be 2 hours and 45 minutes every day, staffed by trained and credentialed teachers, with no more than 6 students per class.
The very worst case scenario is that they offer us nothing. It's unlikely but not impossible. In between is a scenario where they offer him services in the form of weekly one on one speech and OT sessions but not a classroom- more shuttling for me but not 'nothing'.

However before we get to that, we have 4 assessments added on to our already jammed packed regular schedule PLUS three additional appointments for feeding therapy to try and capitalize on the steps the little man has been taking lately in regards to eating.

It's a lot. It's a lot of minutes in the day and miles in the car and therapists and clinicians and forms and exercises and developmental scales and shit like that. A lot.

I feel incredibly alone. Except for the one person that I absolutely love being around, who gives so much back....but is not the best conversationalist, Simon Lev, I am alone.
For the most part, throughout the day, it's just Simon and I.

When it comes to Simon, I have all the energy in the world, who needs and off switch?

Me. I really need to find it.  I'm struggling and I can't even take care of myself when I am given a moment.

There is so much happening these next couple of weeks (not to mention what's been happening for the last 2.5 years) I feel myself completely lost in it.

Yes, there's the IEP and what will come of that BUT there is also each assessment and what closed door we come up to with that.

Will his PT, OT, Psychological, Cognitive and/or Speech & Language assessment bring up an additional diagnosis? Will his delay in any of those areas turn out to be not just a delay from his long stay in the hospital and fighting for his life when he should have been learning to grasp, roll, speak, ask, etc......but in fact turn out to be a diagnostic code, a long term learning difference, a something instead of just a global delay that can be chalked up to an early childhood medical trauma?

We will walk up to each of those possibilities, Simon and Jaime and I and we will knock on those doors. I'd love for the knocking to go unanswered. That door will stay shut. That one too.

Until we have knocked on every door in our assessment plan and no new labels or codes get passed to us from those doors. Of course Simon will remain Simon throughout. He will say "I love you. I miss you." to each of the people that he meets (that he enjoys) and I will remain his mommy who puffs out her cheeks to be a pufferfish when he asks. 

Still, it's a lot to add to an already full plate. A lot of unknowns. A lot of surrendering and waiting. A lot of possibles. I'm feeling quite blanketed by all of it and not in a cozy way. It's heavy. It's March. The 4th, the 10th, the 15th, the 16th, the 23rd. Blech. Throw in a cardioloy visit on the 28th, plus everything else, what do you have? Blech Blech and just a little more....blech.

April brings my favorite Jewish holiday, Passover. I will be so ready for an exodus from all this.

And then, a simple but profound moment from tonight:

I am putting Simon to sleep after a bath, pm medications, a tube feed, and several books. He is lying in bed listening to my sleepy version of Hokey Pokey holding my arm next to him like a teddy bear.  As the song winds down, I lean in for a kiss when he grabs me from behind the neck with one hand and begins to repeat over and over again "Thank you Mommy, thank you Mommy, thank you Mommy."

He is looking right into my eyes and signing it with his other hand. It's not the correct ASL sign for thank you (which he knows.)  Instead he is putting his left hand over his heart and then extending it out towards me.  Over and over again. "Thank you Mommy, thank you Mommy." I started by saying thank you back. I do it all the time.
"Thank you."
"No, thank you"

That wasn't what he wanted though.  It was subtle but I could tell that he wanted something else.
I braced myself.
And then said the harder thing.

"You're welcome Simon."

I think it went on for at least a minute. One of the best minutes of my life.
"Thank you Mommy."
"You're welcome Simon."

Over and over.

And I know that I'm not alone. That I can do this. That he is more than perfect and like Simon tells me sporadically throughout the day....... things might just be "totally awesome."

Here are some visuals:

I think we might just be in trouble

Yes, he picked this outfit out all by wear out.

A new style has been born

Working on a new smile

How 'bout this one?

Maybe this one?

These boots were made for walkin', that's just what they'll do.

Thanks for coming along