Tuesday, December 2, 2014

A Year

A year.

Today marks a full year of Simon getting 100% of his nutrients by mouth.

It's an incredible accomplishment and Laura and I feel...awful.

We've both been struggling with sleep issues and depression for at least the last 6 months and have been somewhat baffled because life finally feels sort of easy for once.    It wasn't until Laura reminded me that we're at the anniversary of this huge milestone that I realized why we are both struggling.

We are on EMPTY.

The absolutely absurd amount of tears, grit, sweat, patience, faith and love that it took for us to get Simon off that feeding tube is indescribable.  I'm not exaggerating when I say that September to April of last year was harder than when Simon got sick and was in the ICU.

Yes, it was that bad.

When Simon was in the hospital as a baby, horrible things were happening, but in some ways we got to sort of "check out" of a lot of responsibilities.  We had lots of folks around us supporting us, we had space and time to have feelings, had a singular goal of just showing up for Simon and for each other and waiting to see what was going to happen.   We just had to turn it all over to the Universe. There was nothing to DO.

This last year?  This last year was not that. This last year was GO GO GO move move move JUST KEEP GOING we have goals to meet and projects to finish and we can't stop even for a second or we might lose ground.

It all started last September when we began construction on our house to build a bedroom for Simon so that we could finally get some uninterrupted sleep (still hasn't happened, by the way).  We planned to be in the house while it was happening since it was all going to be on one side of the house, and thought we'd only need to be out for 3 weeks of the major construction and it would be done in 10-12 weeks. We'd be in by maybe Thanksgiving even!

That, as you may recall, was a hilarious fantasy. It was an actual construction project and BY LAW they all take longer and cost more than planned. So...mid-November became mid-January and the 3 weeks of displacement became 6.

That would have been fine, except Simon also started a new school, in an integrated classroom with *28* other children.  Between the overwhelming amount of children, rigid demands of a non-special day class and the chaos at home, he completely flamed out. He started hitting kids and just generally shutting down, to a degree that sort of freaked me out.

That would have been enough, but then a space opened up for the inpatient feeding therapy we'd been on a waiting list for for a year so Laura and Simon left the noisy, dusty chaos of our house and ditched his last few weeks of school that he already hated, to go live in a hospital on the other side of the state.  Not for a vacation.  To be part of the hardest thing I have ever witnessed anyone do. Just go read the posts that start December 2, 2013.  They're...well, I won't even go back to read them.  It's too fresh.

Then, YEA!  We finished the program!

And came home to absolute chaos as our house was still not finished. And had to implement at home what had taken an entire team of 10 people to accomplish in the hospital. And it was make or break because if we couldn't get this to stick, Laura and Simon might have to go back to the hospital and do the whole goddamn thing over again which would have brought us both to the brink of something drastic.  And every. single. bite. and. sip. was. work.  Every one.  Six times a day.  Day in and day out. It was torture for everyone.

Two weeks after we got back, Simon started at a new school and we had to let go of the eating reins we had been gripping white knuckled for weeks. He had a very sweet but VERY young and very new teacher at a really challenged school.  A school that ended up in the news a few times for some serious shit that was going down at said school.  So we had to start the process of looking for a new school for the next year, while we crossed our fingers that nothing bad happened while he was still at the old one.

It was, as my friend Abby says, "A Puppet Show" (It's short for "That's some awful puppetshow bullshit", a reference to the period when Simon's favorite three words were "awful" "puppetshow" and bullshit").  I felt stripped completely down to the studs more times in that chunk than I did when Simon was in the hospital, in an "I'm totally at my limit and I don't know what comes next but I can't keep going" sort of way.  It was gruesome.  We got through it but we have battle scars.

If I look at our lives now, I can see what a gorgeous house we have and that Simon requires one tenth of the work he did a year ago to eat and that he's thriving and reading and making friends.  I can see that our lives are really quite splendid. Some part of me is grateful but most of me (and I think Laura too) is battered and empty and spent.

Laura had the great analogy of busting ass to get through finals and getting it all done and having a little window of relief and then getting sick from the stress. We're still in the sick part.  It makes no logical sense and isn't where we want to be, but we are both in the weeds. This too will pass, but man, it sucks not to be able to fully celebrate a victory like this.  And life goes on and we will heal because we are, if nothing else, a resilient pack of whackos in this house.

That boy loves his Mommy!

Celebrating the last GI appointment with a hot dog!

Hangin with his sister Emily

Related much?

Oh, what spell will I use at Hogwarts today?

Mugging for picture day

Getting a lift from Dunkle Mike!


Even Storm Troopers need carseats sometimes

Carnitorous killing a cheeseburger

Safety first!

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