Thursday, December 12, 2013

Happy Endings & Abundance

Please forgive the innuendo but there's no other way to describe how this day is ending. Happy happy happy.

But let me begin with breakfast. Not so happy. It felt like just another meal where we didn't get enough in and Simon giving me the finger- in an age appropriate way. I left feeling so discouraged and of course doubting that things were going to change in time and I would be left going home with a child stuck in the push-back stage with no support.

We decided to take it really easy at snack with only Froot Loops and milk (not even together) to munch on. When we got back to our room we found two care packages waiting for us. One of them included a plethora of dried fruits and nuts that were from our local farmers market back in Oakland. I didn't even have time to get all fahklempt before Simon stared ripping open the packages asking excitedly for some dried apple and apricots. Brilliant mom move, I decided to ask our nutritionist, who happened to be standing right there if it would be ok to include some of this in his snack given how excited he seemed to be about it, it was snack time, and she could see quantities and exactly what I would be writing down on our daily calorie intake chart.  Of course she said yes, knowing that I was going to do it anyway and we were off.

Four dried apricots and one dried apple slice later, Simon was pleased as punch and I felt some sort of cosmic shift begin. It was a simple, no behavioral tug of war snack with acceptable volume and drinking happening. We even rocked some Froot Loops along with our very Bay Area delights.

Lunch brought a whole 'nother set of delights with me not having to do the lunch session with Simon. Instead I got to observe through one way glass while Hemma, one of Simon's faves got to test out if he was just working the pushback extra hard with me or if it was a global thing.  Turns out it isn't just me and while I certainly get the pleasure of the full force five year old F-yous, it's pretty much global. That gives us really useful information to work with.

Oh yeah, did I mention that it wasn't me and I got a break. That was really nice after 43 consecutive meals of struggle to actually watch someone else, a professional, essentially affirm that a) I am doing almost exactly what she's doing and b) getting pretty much the same results.

Then, at afternoon snack, the shift continued. Simon was self feeding AND getting in some volume. He ate almost an entire age appropriate portion of quinoa as well as some pinto beans and 4 ounces of milk. All this in a record amount of time with much less struggle and push-back. I wanted to dance my way out of the treatment room but instead just threw the child into the ball pit several times (see video at end). The therapist (yes, the very same one that mentioned rainbows and unicorns a few days ago) said "I have nothing to say to you. Perfect. Just perfect. You and him, just perfect."

The abundance continued with another call from the front  desk saying that we had a delivery. A lovely bouquet of flower that we got to deliver to the cardiac waiting room (Simon starting picking petals off and I asked him if he wanted to pick petals off or give it to other 'heart families').

Here's where the abundance really starts to snowball. After heading down to Turtle Talk early and stopping in the radio station, I got to be interviewed on air, Simon got a present from Santa, we had another very special delivery, an awesome dinner, got to do 'rounds' with all our wealth, one more playroom visit with a treasure beyond belief and a bedtime full of spontaneous kisses.

1.  It was so sweet. Bryan, the fella that runs the radio station was asking me about Chanukah.  I can't really remember how it came up that I was Jewish. He mentioned that he had been looking for someone to come in and talk about Chanukah from one of the local synagogues but no one had gotten  back to him and he was bummed. I said that I was happy to talk a little about it but that there was always Shabbat coming up on Friday. He got so excited and nearly peed his pants when he heard that I was working towards being a  hospital chaplain and could he interview me. It was probably only a 5-10 minute interview but we talked about Shabbat, its meaning and rituals and how different Jewish people celebrate different things according to what being Jewish means to them. I felt like something more than just Simon's mom/feeder. It was rich.

2.  Just before Turtle Talk Santa showed up and started handing out presents. Simon got a Spider-Man  figure that he's been really into but the coolest part was that he just wanted to follow Santa around and watch him and his elves hand out gifts. Super sweet.

3.  As we're heading up for dinner I get yet another call from the front desk downstairs about a delivery. I ask if they can just send it up to our room as were about to have a feeding session. As Simon and I are getting ready to sit down to dinner there's a knock on the door and I open it up to one of the larger edible arrangements I've ever seen. It's loaded into a plastic birthday cake and is about two feet high with melon balls, strawberries, grapes, cantaloupe, and huge chocolate cupcake like looking things that turn out to be large slices of pineapple coated in dark chocolate with white chocolate icing and sprinkles on top. It's massive and Simon wants to dig into it right away. A great segway into the best dinner ever.

4.  Simon ate more pasta and meatballs than he ever has before with much of the meal being self fed. There was bread and broccoli and spaghetti with Alfredo sauce and then to top it off half an oatmeal raisin cookie with just over 4 ounces of milk.

5.  After all that he asks if he can have some fruit from the edible arrangement. With melon slice in hand he asks if we can take it down to see Rachel and Cessy, the other family in the program with us. This was his idea. I asked him where he wanted to go and that's what he came up with. After days and days of radio station visits, an interactive turtle, tricycle rides, and multiple playroom options, that's what he came up with; sharing our fruit and chocolate with the other family that he knows is going through the same things we are.

6.  My heart is already about to explode when this happens:  We have delivered treats to Rachel and Cessy when we're walking out of the room and a mom from the room next to theirs is coming out as well. Of course I ask her to relieve me of some of these fruits and chocolate treats. She does with a grateful  expression that only one parent in a hospital can give another when resources are shared. Simon and I continue down the hall and I ask him if he's ready to give the rest of the fruit bounty to the nurses and out of nowhere (except from the mouth of a child) he states very clearly "No! Patients first!!"

We then proceed to walk all the way around the 3rd floor of Children's Hospital Orange County, poking our heads into any and every door that's cracked open and even some that are not,  where we can catch the eye of a parent or caregiver to offer them fresh fruit and chocolate. Mothers, a father holding a baby, siblings visiting, and an Auntie and Grandma looking pretty worn out all got a little boost tonight thanks to a young man with a heart just a little bigger than it's supposed to be and an appetite for life that's more than impressive, it's inspiring.

This child.

7.  There's no way to start bedtime after that high and it's only 7:30 so I ask the child if he would like to go to the playroom for a half an hour. He chooses the 5th floor playroom and we head up.  I am asked to leave (by him) so as not to distract from the one on one attention that he is likely to get from the volunteer staffing it.

I come downstairs to write this post appreciating his independent if slightly narcissistic behavior.  Thirty minutes later I am back to pick him up and find him beginning a masterpiece with Mr. Potato Head.  I explain that we've got time for one version of the spud and then we need to head back down to the 3rd floor. After getting some nice shoes and a cowboy hat on, I am rummaging in the bin when I spy something that looks too good to be true. A life size Spider-Man mask. Simon wants to put it on immediately and begins spinning imaginary webs alternating with pulling the ask up and asking "do you know who I am?" With the response either being "Spider-Man!!!" Or "I'm Peter Parker!!"

Either way it's just too cute and I'm dying.

8. Our night ends with a few Teddy Graham crackers and a few more ounces of Juice. We are lying in bed. I ask him if I can tell him something about the day. He says yes. I tell him he is amazing. I love him so much and he is amazing.  He carefully takes my two cheeks in his hands, kisses me softly three times on the lips, asks me to be the puffer fish (blow out my cheeks).  "You're my friend pufferfish. I will pet you now." I get soft pets and we lie like this for minute listening to the song 'What Does The Fox Say?' over and over as he falls asleep.

That's what I'm talking about people.

Edible Arrangement!


andreana clay said...

dude! tears! love you guys.

andreana clay said...

dude. tears. love you both!

Jen said...

So happy. Sitting here smiling my ass off. Love love love.

winter said...

I love you!! this is wonderful!

lydia hernandez said...

Great job! I love those edible arrangements, mmmmmm!

josie d. said...

AMEN! THAT'S what the fox says!! Love you.

Momastery said...

Please tell Simon that he is the most wonderful person I know.

You are my heroes.

Love, Uncle Glennon

Aunt Ellie said...

WOW!!!!! Fabulous So Happy

Becky said...

Oh my heart! You beautiful people!

susan said...

Fan freaking tastic!!!!!

Anonymous said...

amazing strength and love and perseverance!