Jaime- I jumped into the Cauldron today. That's how I've come to think of the super intense experience of sitting down face-to-face for a meal with this fierce little being. Transformation of this magnitude in this time frame doesn't come without intense pressure in a contained environment. Pressure cooker might be a better analogy but cauldron sounds a little more poetic, so I'll go with that.
We did breakfast in the 2nd floor cafeteria and I led the whole thing with Laura doing affirmations and the therapist sitting with us. We had the magic breakfast burrito that has been getting inhaled in record time, so I was feeling good until, 4 bites in, things totally went off the rails.
I don't even know what happened but all of a sudden the burrito was unwrapped, eggs were on the floor, Simon had his Hulk sneer going and I was scrambling to get things out of his reach before he could fling them at innocent bystanders. My mind went totally blank and I felt completely at a loss for what to do. Like, dropped-in-a-foreign-country kind of helpless. I've watched Laura do this, so I recognize the "language" and the "customs" and thought I could fake it, but under pressure all that I can come up with is the ugly American schtick.
The therapist started a steady stream of calm suggestions, mild corrections and affirmations for me and Simon. I felt myself flailing and feeling more clueless and self-conscious than I have in years. She helped me limp through it and we ended the meal with Simon consuming about half of what he normally does at breakfast. I didn't feel defeated but I sure felt like I'd just gotten a call from the clue phone that this is going to be harder than it looks. And it looks really freaking hard.
Simon continued to be pretty grumpy all day and put up a good fight at lunch with Laura. Fortunately (?) my Mom and his godmothers (who are the most likely to feed him besides us) were watching that meal remotely so they got a chance to see what he's doing, what we're doing and get running commentary from the social worker who was able to chat to them while they were watching.
The afternoon snack was just me and the therapist with Simon. It went south pretty quickly, with the therapist going to retrieve him after he crawled all the way down the booth bench to a spot 3 tables over. She helped me re-direct him and we got him back on track. We ended with him not only eating what I asked him to but also the 3 Doritos I offered as incentive. Dinner was led by Laura and went relatively quickly but he was still pretty grumpy. I think he's trying to figure out who the hell is driving this ship.
I'm still struggling to figure out exactly what my role is here and what it will be when we get home. I want to take all of this off Laura's plate (pun intended) whenever I can...and...she's the "primary feeder" which means it's really mostly her for...a while? We're both really grasping for some concrete information about what happens when we leave (in, oh, a day and a half). Apparently we only pick one meal a day for the "therapeutic" meal and the rest are about having a good time and getting a decent amount of food in. That's what I heard anyway. I may tape our Friday de-brief because my head is swimming.
We had a visit from our dear friend Bahar and her son Manav who we hardly see since they live in Nepal now. It was so incredibly sweet to see Simon and Manav running around like they did when they were tiny little guys and catch up with Bahar. Funny to do it in a hospital but we'll take what we can get.
I kind of don't want to leave. We have a big room that someone else cleans, food delivered to us, on-site childcare, a team of people working really hard to help us...I'm a little terrified to try to do this once we get back into the big rushing river. I feel a lot like I did on the good days when he was in the ICU. Life was very, very simple. Hard and stressful and not perfect but edited down to the basics. Food, sleep, people, Simon, each other.
I feel like we're about to jump out of the Cauldron and into the fire...
Laura- And Jaime is a champ. She's had about half the time that I did before jumping and stayed totally calm during her time eating with Simon. He's working it out and a lot of that means it comes right back at who ever is closest. It meaning the food as well as the frustration. She is amazing and a total trooper.
We are leaving on Friday afternoon and I'm starting to feel like we are never looking back. Simon has not had a tube feeding since December 2nd and for the last week has managed to take all but one of his medications by mouth. The last one has to be given after he falls asleep anyway so....
We are solid. Mostly. Simon still needs a fair amount of hand holding (not literally although every once in a while he really likes to eat out of my hand- I can't wait to remind him of that when he's a teenager) but we are counting on the fact that he can eat enough to thrive now via his mouth and not the tube.
That hit me today. Simon has been dependent on a tube administering food directly to his belly since August 1, 2008. That's five years and four months of his life.It's been two and a half weeks that hasn't been true. Bahar cried when she heard that. I'm still in disbelief and awe. Both.
This is transformational.
I may never have to make another batch of blended food again. We may no longer have 33 pump bags and extensions delivered to our home every month.
We may never need to carry around a $1200 piece of durable medical equipment where we go. Someday soon Simon may only be a human of flesh and bone without an extemporaneous piece of plastic and latex lodged in his body.
This is huge. I felt it for a brief moment this morning during snack and then tucked it neatly away (but not too far) as I encouraged three more bites of apple cinnamon muffin.....Which he ate.
|Bahar and Laura|
|Simon and Manav playing tag|
|Moving so fast they're blurry!|
|TAG! You're it!|
Also, this is Jaime trying the 1200 calorie (12 oz) peanut butter chocolate shake that the food service folk make. Simon gets 2 oz mixed with 2 oz of milk. Jaime drinks it straight.
...and it hits
.....how can this be so good?
back for more. Please note the glee in the eyes.
It's like when Bruce the shark gets that little whiff of blood in Finding Nemo and his pupils go all big.
Just like that.
1/2 Cup Heavy Whipping Cream
2 TBL Creamy Peanut Butter
3 TBL Chocolate Syrup
9oz Chocolate Ice Cream