Tuesday, December 10, 2013

Rainbows & Unicorns

Don't let the title fool you. We are far from it. But according to one therapist, if we can make it through this phase of testing and pushback, then it will be "like rainbows and unicorns afterwards".

I think I laughed so hard that a piece of tater tot may have flown out of my mouth and hit her.

Seriously? The child was not only a crank monster (do I mean cranky or hopped up on crank the street drug... yes.) during feeding sessions but throughout the last 3/4 of the day since he was essentially on a hunger strike. I hear the team when they speak the words "normal" "still on track" "see this all the time" and I can work on believing them.

And, it's really goddamn hard to know that your child has taken in only a few bites/sips per meal and is requesting to ride in the red wagon prone with pillows because he is in fact weak from hunger and lack of nourishment. I know he's got some extra padding from before we arrived and I know they are monitoring him, we are in a hospital for a reason, and it's taking a lot of willpower not to sneak him some pediasure tonight as he lies there sleeping.

I know there are reasons for this and his little but mighty five year old brain can take in that his discomfort and frustration can be diminished by his own actions. I mostly believe that he can get this. That we could just be a day or two away from the breakthrough. He was on a roll for the first ten minutes of dinner with spaghetti and meatballs disappearing at a joy inducing rate. Then, all I did was ....crap, I can't even remember what it was that tipped the scales and all of a sudden there was milk in my lap and spaghetti and broccoli on the floor.  Playroom time was lost and the tattoos on my forearms were once again doing their best to conceal the child's scratch marks.

I can feel it. We're getting closer.

Um... I wish that were true.
I can't. I can't feel it at all.

I'm not quite running on fumes but I just know that I have to stick to the program and believe the team when they say they've seen it before and have great faith in my and Simon's abilities. We've committed to this and our insurance has committed to this. I've put in way too many hours to not see it through and the possibilities are too great to not try and make it work with everything I've got.

I would really love to get to the rainbows and unicorns, especially if they're edible and my son will eat them without having to blend them up and push them through a tube attached directly to his stomach.

Can I get an Amen?

Also, at this point I'd eat a rainbow pelted unicorn if it was homemade and not scrounged off a plate or from a cafeteria. Or, if it was made of sushi. I'd totally eat a rainbow colored unicorn made of sushi.
I bet Simon would too. I bet he'd eat the shit out of a rainbow colored unicorn made of sushi.

I should stop now.

Thanks for all the love and support people. It's good.


Nate's Mom said...


Stephanie Hsai said...

I am there with you guys! Hang in there, Laura.

Stephanie Hsai said...

Amen! Sending you and Simon lots of good thoughts. Hang in there.

Anonymous said...

Wouldn't it be great to be looking back on all this? You will be, soon enough. You guys are incredibly strong--our thoughts are with you!!

Linda Chrisman said...

Personally, I have done nothing harder than abide with my son as he refused to eat, all the while needing to trust that the hospital protocol worked.
love to you all