Sunday, December 15, 2013


Oh dear friends, it's been an incredible weekend. Jaime arrived late Friday night and I was already asleep, still feeling quite sick. Saturday morning was lovely with the three of us feeling the warmth of being a trio again. Breakfast was unremarkable.

That's the thing we've been waiting for....There were strategies put into place, Jaime did a great job observing and affirming (except for when she tried to talk to me about something else) and Simon was eating. There was a little push back but only at the very end of the meal.
We moved through the meals with the same sort of pattern with Jaime on a steep learning curve to understand how focused I needed to be, how to support Simon but not distract him, and when to just be there. She's awesome. I can't wait for her to learn more from the team and for Simon to really feel what a unit we are.

As you saw we had a great time at Pretend City and snack was challenging for sure as we battled probably the most distracting environment possible but we Fitch-Jenett's really like to 'go big or go home'.

We finished the afternoon with a stop for to-go Sushi that we thought would mostly be for Jaime and I to eat back in the room with Simon mostly sticking to his hospital dinner. I'm not really sure what crazy non-gastric person thinks with that kind of logic but the kid was a sushi eating monster when we laid out the food on our little table. Two pieces of Unagi (bbq eel), two pieces of Inari (marinated tofu skin stuffed with rice), and several bites of tempura shrimp + more rice, later, I was about to explode with joy. I was still needing to employ eagle eye focus and several strategies but something was different. I could see it in his bites, in his self feeding and just the fervor with which he attacked his food. There was an ownership of it that was awe inspiring.

The morning brought a whole 'nother level of success. I don't know what happened but something has clicked. He made his own breakfast taco with a soft corn tortilla, egg, cheese, and salsa and damn near inhaled it with adult size bites. I almost had to go check his empty syringes from the night before to make sure that they/I hadn't given him his Periactin (appetite stimulant) on the wrong night. He takes that Sunday night through Thursday night to give our team the most bang for their buck while we're here. It's also been the schedule we've been on for the last 6 months so we're pretty used to weekends being more about playing with hunger than really trying to stick to a regular eating schedule where we focus on volume and regular meals and snacks.

Today we did both! Dude ate three meals and three snacks! Solid amounts once again with very little push back.  There was still focus and encouragement going on but it was a whole new ballgame. There were home runs and scoring!! And the crowd (of two) was going wild...internally as to not freak out the child.

I am so excited to come to week three with this new....Simon. He's different. Not just his eating but everything. His language, his imaginary play, his interest in engaging with the people and the world around him. It's all those things that most folk take for granted that I now understand comes with that first learned behavior we integrate as infants. Eating.

It's not just about taking in nutrition. It's the first time we learn about back and forth with another human. It's the first time we experience preference. It's where we begin, I mean really begin to play with curiosity and exploration, distaste and pleasure, desire and feeling satiated. It's when we engage. Beginning the practice of eating as a new person is so much more than just eating. It is about laying the foundations for taking things in, for sharing, for moving through delight, frustration, distaste and joy until the next moment.

Simon missed out on all of that when it was supposed to get laid down and is just working it out now on such a deep level. It's amazing to watch. It's becoming part of his core where as before I feel like it was there but not at this cellular level.

Right now, two feet away from behind the hospital curtain, I can hear him playing with his new Captain America and Transformer figures. He is giving them distinct voices and storylines. This kind of creativity comes from an engagement that we haven't seen before. It is devastatingly beautiful to watch and I can almost forget that it's five years later than when it should be.

I don't like 'should-ing' all over myself so let's just say that when is not so much as important as how beautiful it is to watch and be a part of.

 I will be Captain America to his Spider-Man any day. It may not always be easy but I'm ready.

Week 3!! And we're off!!!

 Sometimes we switch up who wears the cape in the family

We were not the only turkeys at the Zoo
...and certainly not the prettiest


 Then we got to go to Target for a shopping spree sponsored by an incredibly generous local family and the Ronald McDonald House!!
I can have both?!

Let's PLAY!!!

Playing, like a typical kid, with other kids. It was a trip. 
Superhero smack down!
Sadly, by the time we were done at Target and ready to go meet his great-grandparents the boy was TOAST.  We had a short visit and didn't even try to get pics, but have plans for a real visit when we come back in 3 months for a follow up.  It was still super sweet for everyone to get to meet everyone (and he got to meet a great aunt too!)
A little superhero yoga before bedtime
Spidey and Mama powering down after an exceptional day
This is how he fell asleep.  Swear to god. 


elizabeth grey said...


Miki Armand said...

I am constantly amazed at how amazing you two women are. There aren't enough superlatives!

susan said...

Awesome! amazing! I've been wondering about y'all all day (which is a little odd since we've never met), but following this story has me totally captivated. Go Team Shimmy!