Monday, December 2, 2013

And it's a ......Hospital

There is a clock that ticks loudly (and is an hour off). The fluorescent lights in the hallway never go off and it's important that the window in the door to our room not get blocked for security reasons. The curtains are sheer and even though Simon and I don't have any lines attached to us there are still lights and monitors that don't stop blinking and can't get turned off. One of Simon's shirts and a pair of his underwear are hanging over them right now as I try to get the room to some shade of dark. There aren't that many, but I can still hear the "trauma stat" announcements over the PA every once in a while as well as the occasional sound from a child who has reason to be unhappy. All of this to say that this is an incredible place and I know some magic is gonna happen this hospital.

I am re stimulated. I know these light blue wafer thin blankets. I know these curtains that run on rails in the ceiling. I know and love these nurses that learn my child's name in an instant but refer to me only as 'mom'. I know this food, these smells, these lights and sounds.

I know exactly where I am and in one instant it is so familiar and then in the next so discordant with the child running next to me along the hall in his new monster slippers and street clothes.

I have my very own binder, blank food log reports, and hospital bracelet. Simon has toys already borrowed from the playroom and made his own, a new love for Turtle Talk (time twice a day to have real time conversation with Crush, the turtle from Finding Nemo), and an understanding that we are now part of an 'eating team'.

He will no longer have anything put through his g-tube during waking hours and has had his last tube feeding as of 11:30 this morning (maybe for good?)

His first supervised snack was at 3:00 and it was more a chance for the feeding therapist to watch and record a typical 'feed' with Simon and I so she could get a sense of where he (and I) were at.  I was half expecting a grade at the end or at least a little bit of feedback like one gets after performing on So You Think You Can Dance. Will America call in and vote for Simon & me?  Because, while  I think this afternoons performance has room for improvement, we could very easily become Americas best eaters.

I'm tired and wired and can't believe we have 18 more days of this. We haven't even had a full day yet and I'm overwhelmed with everything that needed to get done. And that was just an 8 hour day.

Simon is a trooper though. He is just amazing and once again is the greatest teacher in being present for each moment, moving through the hard ones and savoring the sweet ones. His laugh and smile are of course already the talk of 3North.

Tomorrow begins with a 7:30am weigh in and then we head down the hall in our very own red wagon for our first real feeding therapy session.

All of the love and support coming our way is amazing.  Thank you. Thank you. Thank you.  It's lonely here in the hospital but it makes all the difference to check the interwebs sporadically through the day and feel the love. It's quite amazing really.
Please forgive me for not responding directly to each one of you since that would be my dream. Instead just know that I am eternally grateful but am busy counting spoonfuls of yogurt.

So much love


Jeannie Stone said...

Hugs to you and Simon, xoxo

Anonymous said...

I'm just an internet stranger who reads your blog and cheers you and your family on, but I am sending you all good eating vibes and strength for this amazing journey.

Brook Pessin-Whedbee said...

Hi Laura,
Started reading your blog again.... Thinking of you all and sending light and love and all good things your way.

Brook Pessin-Whedbee said...

Hi Laura,
Started reading your blog again... Thinking of you all and sending light and love and all good things your way!

Anonymous said...

Sending love and hugs and praying for awesome things. <3 Michelle

Janice Richason said...

Robyn and the Richasons send BIG HUGS to You and Simon. Robyn got off "the tube", hope Simon will too. Keeping you in our prayers :)

Geyer Ohana said...

Lots of love from the Geyer family! said...

Sending you all lots of love, meta and cheering on. May the days go quick and successful.

FredKarenZuzu said...

Hang tough sister! How about a celebratory 'oral only' dinner at our place after the New Year? You can even choose the menu :) xo Fred

FredKarenZuzu said...

Hang tough sister! How about a celebratory "oral only" dinner at our house after the New Year? You can even choose the menu :) xo Fred

Anonymous said...

Sending you love and good wishes from Sebastopol!

Alicia Choury said...

sending giant hugs and love and i'm with you both virtually. xoxoxo Alicia

kristi said...

xxoxox and prayers for yall! After all you've already overcome,You can do this. I know it's overwhelming, but looking at the entire picture this experience pales in comparison. Just keep reminding yourself why you are there. This is for a very positive thing!! Thinking of yall!