Saturday, December 14, 2013

Freebirds

This morning I woke up hear to the sweetest little voice exclaim "Mama's here!" and feel a warm little body crawling into bed with me.  Simon looked so happy to see me and snuggled for a good 10 minutes.  Then we lay in bed and watched videos on the iPad until it was time to get ready for breakfast.

Breakfast was...hard,  for me.  It was the first time I'd been in the room with them while they were doing their thing and I felt like...a bluejay is what comes to mind, for some bizarro reason.  My role for most of this week is going to be "observation and encouragement" which sounds easy enough but...I wanted to chirp encouragement every 5 seconds and nudge things closer to him and pick up his pieces of food to hand to him and then would lose attention and try to talk to Laura about something totally unrelated and then pop up to get something and then sit back down and then almost fall asleep (I think from stress) and then try to shake myself awake and try to just BE with them.  It was really hard.  A couple of times Laura looked at me sideways and gave a barely perceptible shake of the head when I said or tried to do something that wasn't a good idea.  I didn't take it personally at all but also wondered what my threshold was going to be for (totally essential, completely appropriate, warranted) wrist slapping.  Didn't hit it tonight, so we'll see what happens tomorrow.

Overall things were so much smoother than they were last weekend.  No epic melt-downs, no huge fights, chowed on sushi in record time for dinner.  As Laura says, "we're in a groove".  (Oh, and she's feeling better!)

We kicked around the hospital until 1 pm and then we got sprung from the hospital for a full 4 hours!  It was amazing and a bittersweet reality check for me.  We decided to go to a place called "Pretend City Children's Museum" which pretty much blew my mind.  It was a lot like the children's museum in Portland, OR that I fell in love with this summer, but even better.  I'll let the photos tell the story in a minute.  We ate lunch at the hospital but we needed to do a snack at this place.  Our first meal outside the hospital since we started the program.  About 30 seconds into it, I realized it's like trying to get a kid to do math problems in the middle of a circus.  But I'll be damned if the kid didn't do it.

I felt like going to the front desk and getting on the P.A. to shout , "HEY PEOPLE!  LISTEN UP!  MY KID JUST ATE HIS WHOLE GODDAMN SNACK IN THE MIDDLE OF PANDEMONIUM!  Who rocks?  WE ROCK!  That's all.  Carry on."  Instead, I felt tears start to sting my eyes, looked up to see a Mom looking at me a little funny and went to the bathroom to have a good cry.

The magnitude of what we've been through up to this point hit me.  Recognizing that 99% of the other parents in the room don't have to put blood, sweat and tears and 25 minutes into getting their kid to do something as mundane as eat 2 pretzel chips, half a tablespoon of hummus, 3 tablespoons of apple and 6 ounces of smoothie hit me.  The amount of work Laura has been doing and the results we are seeing hit me.  It all just hit me like a ton of bricks.

I went out to find them and knelt down to be face to face with Simon.  I said, "Hey Simon, can I tell you something?"  He nodded, a little distracted.  I held his face with both hands and said, "I just wanted to tell you how proud I am of you. You are working so, so hard and doing so, so well learning how to eat.  You're amazing".  He looked me right in the eye, grabbed MY face, kissed me softly on the lips and then took off to go have some fun.

*cue tweety birds circling above my lovesick head*

We have a 6 hour pass tomorrow and plan to go to the zoo and then... then we have a special visit. Our sperm donor's mother (who lives 5 mins from the hospital with her aging parents) has taken me to and from the airport and is the one who loaned us her car this weekend. She's been so incredibly sweet and wanting to help in anyway she can.  The rides and car have been a god-send.

Last week when we set up the car-borrow, she asked, ever so cautiously, if it would be possible for her parents to meet Simon for 2 seconds when we return the car on Sunday.  They had heard all about Simon and...wanted to meet their great-grandson. How could we pass up a chance for a connection like that? So, tomorrow, on top of getting to get out of the hospital again,  Simon is going to meet the only great-grandparents he still has living. I sure dig this crazy California lesbian million-person family we've set up for ourselves.

 "It's totally sweeeet, Dude", as Crush the surfing turtle would say.
Officer Simon

Farmer Simon

Doctor Simon

Tow Truck Driver Simon

Jazz Man Simon

Dental Patient Simon



Friday, December 13, 2013

Debbie Downer wants off the roller coaster

I hate to even follow up with last night's post at all. What a high. Two giant steps forward.

Today was a step back. For everything. Simon was back to throwing food and stalling. I was feeling more tired than I have in days and then got sick. Yup, here I am in what's supposed to be a clean and sterile environment (full of sick people and their many visitors) and I catch some sort of stomach bug. I've had low grade nausea all day and the idea of eating or being close to food makes it worse.
Awesome for having to do 6 meals a day with very few breaks in between. Awesome to have to model eating for the child. Awesome for trying to keep up with a five year old and freaking out that he might get sick as well.

Just kind of a shitty day only compounded by the delight of yesterday's end. Sometimes I hate contrast.
The team was super supportive during our Friday afternoon conference. I can almost believe that I'm doing well. Nausea is a great detergent to feeling good about anything. Still, I love simon so strong. When he asks if he can "save me" after a rough meal I want to hug him too hard and give a resounding yes!
When he puts on his superhero cape after a shower and is half naked alternating between being a baker (cape around front) and Captain America/Spider-Man/The Hulk (cape in back) I think he is simply the most delightful being ever.

When I feel like barfing or wanting to just lie my head down in the plate of spaghetti from fatigue and he's pushing the table into my knees, well, then I just want the roller coaster to stop, get my money back, and pretend like a G-tube isn't all that bad and go home.

On a more mundane note, Simon has finally learned to puff out his cheeks like a puffer fish and slide down something on his stomach. Seriously, if we leave now, that doesn't sound like a total waste right?  I can think of a lot of people that would pay several hundred thousands of dollars and countless man -hours for skills like that.

Thank you dear friends and family for the packages that keep coming. The cupcakes were a huge hit with the feeding team, the nurses on the floor, and the random patients and family members that passed by during Turtle Talk in the afternoon.

Something else kinda remarkable...Simon chose to stay in the room tonight and miss the 5:30 Turtle Talk. First time since Monday December 2nd. I don't know what to make of it except that maybe he and I do so much of it anyway, he wasn't feeling the need.

Which also lets me know that I need to work Extra hard this week to stop talking like a Southern California surfing Turtle.


Laura out.

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!



Wednesday, December 11, 2013

Telemarking & Tanking

Telemark skiing is intense with deep lunges and a sharp curve (thank you Wikipedia). It's a great metaphor for about half the meals taking place in the last 24 hours. I have seen Simon take more bites himself in a shorter amount time, with greater chewing and drinking skills, in the last day than ever before. It's truly wonder-full to sit with him and eat some food myself as he works his fork and spoon from plate to mouth. We've come so far in just a week and a half and the therapists keep telling me that his progress is so palpable and my work with him, "just amazing".  It feels good. It's important to remember that every single one of them has been doing this for years and has seen so many kids come through the program.

Those are the good moments.

Then, and unfortunately, the day ends with Simon and I doing dinner and then last snack on our own in the hospital room. Tonight ended with a dinner of less than five bites of food and a tantrum of epic proportions when he flat out refused anything for last snack, thereby losing his chance to go to the playroom for 30 minutes of play. We had four fucking bites of Frosted Mini Wheats left. Instead he had to ask over and over again if he could give me a check up complete with echocardiogram.

I DON'T NEED AN ECHOCARDIOGRAM!!!

I fully admit I don't understand the 5-year old mind. Especially one with a history of medical trauma and pragmatic/expressive speech delays. I know that there has been so much done 'to' him in his short  but full life. Control is important. It is essential for my little man to feel it given how much has been wrested from him with blood draws and IVs, tubes and therapies, schedules and dr visits, not to mention surgeries and hospitalizations and of course being hooked up several times a day to a tube and pump administering food directly to his stomach. My heart gets all achey and breaky thinking about how much control has been taken away from this little being when just being a little being means that you struggle with the whole autonomy and dependence thing to begin with.  I've heard more than my fair share of typical 5 year olds shout "I do it myself!!!"

So here we are trying to get Simon to this place of independence but to do it, the walls have to close in tighter than they ever have before. We are doing this to open up his world. It's a little mind-fuck for me, so it's even more so for him. Except that he's not quite as cerebral as I am (and I'm not even that cerebral to start with).

So my questions is...why can't the little f**ker understand when I say "Simon, when you finish your Frosted Mini Wheats, then we can go to the playroom/watch a video/go to the radio station/whatever the fuck you've identified to me that you want to do after we're done with breakfast/lunch/dinner/snack".

We go round and round with:
"No! Never!"
"That's fine but then we won't go to the play room."
"I want to go to the playroom!!!"
"Ok, that sounds great. We can go to the playroom as soon as you've finished your meh meh meh."
"I won't!"
...and repeat.

The team keeps telling me that it will sink it. He will get it.

But it's breaking my heart to watch the process. Simon will come out of this feeling more in control of his life and his world, but to watch him go through the process of understanding how to do that himself, to go through this transformation and become truly different than he's ever been, is heart breaking.

I know that most parents go through this at some point. Watching your child head off to college or move into their own place. Seeing them fall in love only to have it not work out and then realize that it wasn't right for a reason. Not getting that job, internship, award. Or even, have a few near fatal accidents and critically ill child and come through those moments with a greater appreciation for each breath this life affords.

Simon is five, not twenty-five. I would have liked one, if not two more decades, before having to watch him have to go through this. I think those two decades might better prepare him for the pain that often comes along with transformation. Maybe not...but c'mon, as the boy child of two mommies, he probably would have been pretty good at talking about his feelings and sharing. It's what we're known for.

Breakthrough can come at any time. I know I'm ready for it. I suspect that without having the words for it, the Little Man is too. (It's really hard to hear him talk in his sleep about being "so sad.")

Not to end on that note, Simon was given a superman cape today by Epic Eric, who runs the Turtle Talk program here as well as being a music therapist. After playing drums with him for a solid 45 minutes, Simon took off down the hall, arms raised, shouting,

 "I am the superhero for the whole world!"

Yup.



video

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.

Trending

I'm really tired so this one might be short but I think we had a good day. We had a breakthrough yesterday at lunch where the child seemed to waver on his hunger strike. Then snack and dinner and last snack were wicked hard so I thought maybe I was tripping during lunch but this morning seemed different again. Morning snack, lunch, afternoon snack and even part of dinner seemed to follow the same trend plus I've never done any psychedelic drugs so....it seemed like we'd had a breakthrough.
Simon was eating again and taking in anywhere from 3-6 ounces of fluid, including some fruit smoothies at each meal so I could stop imagining him wasting away. We earned playroom time (I say 'we' since that's when I also get a break), had great times chasing each other through the hospital and playing DJ at the radio station. Simon was even called out during Turtle Talk for being a regular and got his name mispronounced by Dorie several times. He made several friends throughout the day and I felt a little of his and my old self returning.

Sadly dinner and last snack tonight were more challenging with the latter ending on such a weird and sad note.  Simon chose to not eat anything and therefore not get to go to the playroom for one last jaunt. After that, he made the choice to at least finish his juice so that we could read books or listen to music during bedtime. The child finished 5 out of 6 ounces and then for no apparent reason just threw the last bit in the cup across the table. I stuck to my guns and very calmly reminded him of our deal.
We brushed teeth, he got in bed, I kissed his forehead and turned out the lights.

"WHERE ARE MY SNUGGLES?! WHERE ARE MY SONGS AND STORIES?! I got these even during hospitalizations with IVs and picc lines!" the boy screamed.


Ok, it wasn't him.
It was me and it was inside my head because  didn't want to disturb my child and need to put away even more $$ for therapy for him later.

So again, let me just say this is really hard.
But I think there is light. I think there is.

Tomorrow marks the half point. When I blog tomorrow night we will have made it through more than we have yet to do. Here's to weight gain, pleasant meal times, and rainbows and unicorns.

Thank you again for all the love and support. It's huge.

Sunday, December 8, 2013

Opposite World or Weekends Suck

Not everybody's working for the weekend.

Holy Hell.

I mean that in a true and deep way.

It is my understanding that parenting in general is holy work. This parenting plus stuff keeps me even that much closer to the Spirit and I'll be forever thankful for that...when I'm feeling meta which I have to say, this last week, is not very often.

I know that I am growing a human being and it is my job and my hope, to keep him as close to his perfect self that he was born with for as long as I can. I do believe it is one of my essential responsibilities and passions.

And, this last weekend was also a little slice of Hell. I'm not even sure how I would define Hell but seriously, if it has anything to do with being with people that you love so so dearly and not being able to actually be with them in any fashion that is familiar or pleasant, in one case really the opposite, then sure, let's just say that this last weekend was Hell for me.  (Spell check keeps wanting to change that to he'll but I won't let spell check try and make it all about Simon. This is about me gosh darn it).

Jaime got in late Friday night and it was simply delightful getting to hold her and download even just a little of what's been going on. I mentioned how the team really expected Simon to start having pushback  and were kind of sickeningly pleased to see him start it early. "Ahead of the curve," they said.  Little did I know that this also meant that the pushback would only intensify over the weekend when it was just going to be me and him, six meals a day, without the aid of his appetite stimulant and/ or Jaime who is not even allowed to be present for meals and snacks during this first week.  Just Simon and me six meals a day for two days.

It started out as I expected. A little breakfast, a little pushback. Ok. That was the hardest meal we've had in a long time and he hardly ate. No worries, we have another meal and clearly he'll be hungry for this one since he barely ate anything for breakfast. I can do this. No problem. One meal he'll eat less and then the next he'll be hungry again and I can work with that.

So wrong. I was so very very wrong. From breakfast on things just went downhill faster than a homemade soapbox derby car where you've forgotten to add brakes and remember halfway down a steep hill. I have never been bit, scratched, or had so much food thrown at me. I have never felt anger and frustration course through me but need to portray the exact opposite....for 45 to 60 minutes at a time.  I have never loved someone so much as I love Simon and be totally unable to feel it as we are struggling with something as simple as getting through the last 4, then 2, then just one (with a last drink) bite.

I'm not supposed to ask yes or no questions. I'm not even supposed to ask open ended questions. I can re direct, give choices, distract and then refocus, ignore most but not all bad behavior, keep
accountability, affirm and compliment with specifics, keep portions appropriate, keep in mind intentional volumes but not get into power struggles, model eating but not focus on my own eating, and not let it all drag on for more that's an age appropriate time to be sitting with a five year old. Oh, and I can use incentives but not really distracting ones while eating. Fun when your child is getting so frustrated that they will grab anything and everything within reach and throw it.

It starts at 8am. We have a 10:00am snack. The there is a 12:00 lunch, 3pm snack, 6:00 dinner and a 7:45 last snack. All but the last one usually last between 35 and 50 minutes including cleanup. Last
snack is usually shorter but not by much. If he throws food on the floor he has to clean it up. If he
begins playing with with utensils as a stalling tactic I have to take them from him. If he wants to play
and distract, I have to play along but bring it back to choosing what his next bite is going to be or have him choose the next activity after the meal but remind/ ask him what he needs to do to get there.

Add in the not insignificant pragmatic and expressive language challenges Simon has, and the last 12 meals make for some of the most challenging interpersonal interactions I've ever had. Please remember that I am a former social worker, camp director, and chaplain in training. I am also five and half years into being the mother of a child with significant medical and developmental needs. So in less eloquent phrasing, this past weekend was really fucking hard.

My wife, my love, my partner, Jaime was amazing. She showed up. She played with Simon. She let me cry. She touched my hand, my back, my cheek, the back of my neck, just to let me know that she was with me. She told me to not come with them in between meals when Simon was free to hang in the playroom, the radio station or just roam the halls. She went out during our eating sessions and did laundry, bought real food, and just in general affirmed that she saw how hard this was.  I love her. I appreciate her so much.  I can't believe she's gone for another five days but then will be here and actually get to be a part of this whole process. I'm wicked lucky and I know it.

I know I've forgotten some key components of all that I've learned but there it is. That's some of what we're doing. I won't lie. I like it much better when there's a feeding therapist doing half of it during
the day. I like it much better when it's them for two meals and snack and me for two snacks and one meal. I like that balance much better than just me for all six.

So, here's to another week. Here's to breaking through this boys incredible pushback and to some normalizing and internalizing of a typical meal. Here's to support from an incredible team and family and community.  Here's to getting to the halfway point this coming Wednesday and then knowing that  we've been here for longer than we still have to be here.

Here's to it.

Oh , yes. We had visitors and managed it quite well. Steep learning curve we're on but we're working it.
Mad love to Linda, my shvester and family, Chris, and Kathie & Tara for helping pass the time. Mad mad love.