Monday, December 16, 2013

It's just not easy

We had such an amazing weekend. I was sure that this was *it*, that we had crossed over. I was sure that it would just be smooth sailing from now on, building on the independence and volume that we'd seen over the last 48 hours. So sure in fact, that Jaime and I were so excited after Simon went to bed that we stayed up till 11:00 just chatting and blogging and dreaming. We dreamt of the removal of plastic medical devices, the return of durable medical equipment, travel, and a much simpler life.

Then came breakfast.

Jaime was included right away as an active observer and cheerleader since we've come so far. Simon however wanted to not be included. I don't know whether it was coming back to "hospital food" after a weekend mostly out and about, or he was just having a morning. Whatever it was it felt like we were back in last week with the pushing away; both himself and the food. There was whining and grunting and even some throwing. Simon was doing it too, just outwardly to my inward.

 I was ready to pound my head against the wall. Really? Again. We were back here again?!

Jamie, the unicorn and rainbow therapist, was very clear. It's not a completely linear process. My brain gets it.  Being five and trying to develop into a contributing member of society is not a linear process.  I think the same is true about being 40, but this is not about me.

Simon and I had a hard day. We had hard meals, with dinner ending abruptly and a loss of playroom time as food got spit out on to the floor with only two bites to go.

Friends, I'm tired.

I'm tired of having so much of my day be focused on trying to get Simon to do something that he doesn't want to do. This is beyond your average parenting. This is beyond parenting plus. This is hyper-condensed parenting plus.

And here comes the bitter bitch rant.While I am so grateful beyond words that Jaime is here and providing so much support, it's also so much harder having to share Simon when the share is so totally lopsided. Jaime gets to observe and cheer lead. I get to set intentions and stick to them. Jaime gets to affirm Simon for his new skills and then take off with Simon to do something fun after meals to give me a break before the next meal. I get to plan menus and shake off all the excess energy from remaining calm after having my knee hit multiple times and food thrown across tables.

We have just been giving the green light to co-lead which is very exciting. This means that we can practice with her leading and taking the firmer line position. I am so ready and so nervous about what this means. Even before coming to CHOC we would take some meals and have Jaime work on being the primary 'feeder'. These meals rarely went well. I think by time we got to Dec 1st we had come to some kind of understanding that Simon would just eat more with me than with anyone else.

I'm tired of that understanding. I think we'll get to another understanding of it some day, but it feels far away right now and I feel sad and scared about the backtracking. I know Jaime is ready and willing. The question is more about Simon being ready to feel challenged and supported by someone other than me with this new protocol and set of strategies.

We have 4 days left and then we get to/have to go home and figure it out for ourselves. I know we will continue to have the support of the CHOC team as well as our amazing team at home and....for most meals of most days it will just be us...............and that feels mostly like me.

*cue soft and sad violin*

We have come so far and even the frustrating moments and food not eaten of today are not even close to the frustrating moments and food not eaten of two+ weeks ago. I know that the work of these 3 weeks and the months that will come after mean the years to come will bring freedoms and travel and health and growth that wouldn't be possible without this struggle. I'm still bitter tonight that I had to take away playroom time and Jaime got to take Simon around the floor to chat with nurses and share goodies.

She's still my favorite. He is too.

                                                                   Heading to Breakfast

 Mama gets in the ball pit

 MM and PopPop visit!!


3 More packages today with treasures!

Kind of like the Royal Wedding
Jaime= Pippa?

Also, for those of you wondering what the freaking frack "Turtle Talk" is since we talk about it non-stop, here are some little samples:

Thank you Friends for all the love and support. You have no idea what it means to me, to us.
We are blessed.

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