Feeling like I did that day that we left the PICU at Children's Hospital Oakland that November 20th, 2008.
Like I was walking out into the bright daylight after being on a spaceship for a really long time and thinking that I recognized the planet I was on but also pretty clear that I was not where I started.
I'm a little confused. Where are my sheets to record calories? Where do I fill out tomorrow's menu? Where are my proportioned plates that come every two hours cooked and delivered? Who is whispering encouragement and known but forgotten strategies in my ear? What do we eat for breakfast? What do we do for fun now that Turtle Talk isn't happening 2x a day?
It's just like when I wondered who was going to come around every few hours and check his vitals, NG tube, heart and respiratory rate. I am on my own. I portion out his food. I think about nutrition. I remind myself that I know what to do. It really has become a part of the air I breathe now. I don't have to think about it all that much.
I have to surrender and let go. There is solid ground beneath us. We packed it solid with three weeks of really intense and hard work. We laid a foundation.
Dr Katz said, in our final full team conference, that if it were up to him, they would have pulled his tube out already.
I nearly crapped my pants.
*speaking quietly* I know that he's right. I know that we've got this.
I don't think that the next few months will be easy.
I do think that they will be all about integrating what we've learned in a less controlled environment and eventually become second nature. The same way that you all know that when you wake up in the morning, you will eat food, go about your business, laugh or cry, visit the lavatory, and breathe some combination of fresh and recirculated air...I know that Simon and I will do the same. It will just take us some time to do it and not think about it so much.
Jaime is and will continue to be an amazing source of support AND the team was clear that I am the primary feeder for a while. Simon needs to feel more success right now than he does challenge, especially during these next few months. She will have her times but it's mostly going to be me.
The honest truth is that I'm looking forward to it. The last few days of Jaime stepping up to the plate were as hard on me as they were on Simon. I was just getting into the groove and really feeling like the tools were mine to master. I missed getting to practice. It was so important that Jaime get that time and I will forever be in awe of her ability and vulnerability....and I'm glad to be back with Simon at the table.
I hate to admit it but the song from Aladdin is playing quietly in my head. Cheese Fest but true.
Mommy/Aladdin: (Don't you dare close your eyes)
Simon/Princess Jasmine: A hundred thousand things to see and taste
Mommy/Aladdin: (Don't hold your breath, it gets better)
*That's not embarrassing right? He won't be thoroughly upset with me in 10 years time?*
So this is it dear friends. It's the final post for a while, I think. We're going to try and go back to some semblance of normal. Our own special brand of it (with theme songs from Disney slowly fading away) and school and yoga and community gatherings coming back into the picture.
The Solstice is tomorrow and the Fitch-Jenetts are perfectly poised for the return of the Light.
Blessings abound.
Soooooooooooooooooo much love for all the support and fellowship. If there's anything I can ever do for you, please let me return some of the love somehow or someday.
LOVE YOU CHOC!!!
Like I was walking out into the bright daylight after being on a spaceship for a really long time and thinking that I recognized the planet I was on but also pretty clear that I was not where I started.
I'm a little confused. Where are my sheets to record calories? Where do I fill out tomorrow's menu? Where are my proportioned plates that come every two hours cooked and delivered? Who is whispering encouragement and known but forgotten strategies in my ear? What do we eat for breakfast? What do we do for fun now that Turtle Talk isn't happening 2x a day?
It's just like when I wondered who was going to come around every few hours and check his vitals, NG tube, heart and respiratory rate. I am on my own. I portion out his food. I think about nutrition. I remind myself that I know what to do. It really has become a part of the air I breathe now. I don't have to think about it all that much.
I have to surrender and let go. There is solid ground beneath us. We packed it solid with three weeks of really intense and hard work. We laid a foundation.
Dr Katz said, in our final full team conference, that if it were up to him, they would have pulled his tube out already.
I nearly crapped my pants.
*speaking quietly* I know that he's right. I know that we've got this.
I don't think that the next few months will be easy.
I do think that they will be all about integrating what we've learned in a less controlled environment and eventually become second nature. The same way that you all know that when you wake up in the morning, you will eat food, go about your business, laugh or cry, visit the lavatory, and breathe some combination of fresh and recirculated air...I know that Simon and I will do the same. It will just take us some time to do it and not think about it so much.
Jaime is and will continue to be an amazing source of support AND the team was clear that I am the primary feeder for a while. Simon needs to feel more success right now than he does challenge, especially during these next few months. She will have her times but it's mostly going to be me.
The honest truth is that I'm looking forward to it. The last few days of Jaime stepping up to the plate were as hard on me as they were on Simon. I was just getting into the groove and really feeling like the tools were mine to master. I missed getting to practice. It was so important that Jaime get that time and I will forever be in awe of her ability and vulnerability....and I'm glad to be back with Simon at the table.
I hate to admit it but the song from Aladdin is playing quietly in my head. Cheese Fest but true.
A gentle re-write
Mommy/Aladdin Sings:
I can show you the world
Shining, shimmering, splendid
Tell me, Simon, now when did
You last let your heart/taste buds decide?
Shining, shimmering, splendid
Tell me, Simon, now when did
You last let your heart/taste buds decide?
I can open your eyes
Take you wonder by wonder
Over, sideways and under
On a magic carpet/culinary ride
Take you wonder by wonder
Over, sideways and under
On a magic carpet/culinary ride
A whole new world
A new fantastic point of view
No one to tell us no or where to go
Or say we're only dreaming
A new fantastic point of view
No one to tell us no or where to go
Or say we're only dreaming
Simon/Princess Jasmine sings:
A whole new world
A dazzling place I never knew
But when I'm eating here, it's crystal clear
That now I'm in a whole new world with you
Now I'm in a whole new world with you
But when I'm eating here, it's crystal clear
That now I'm in a whole new world with you
Now I'm in a whole new world with you
Mommy/Aladdin:
(Now I'm in a whole new world with you)
Simon/Princess Jasmine: Unbelievable sights
Indescribable feelings
Soaring, tumbling, freewheeling
Through an endless diamond sky
Indescribable feelings
Soaring, tumbling, freewheeling
Through an endless diamond sky
A whole new world
Mommy/Aladdin: (Don't you dare close your eyes)
Simon/Princess Jasmine: A hundred thousand things to see and taste
Mommy/Aladdin: (Don't hold your breath, it gets better)
Simon/Princess Jasmine: I'm like a shooting star
I've come so far
I can't go back
To where I used to be
I've come so far
I can't go back
To where I used to be
Mommy/Aladdin: A whole new world
Simon/Princess Jasmine: Every turn a surprise
Simon/Princess Jasmine: Every turn a surprise
Mommy/Aladdin: With new horizons to pursue
Simon/Princess Jasmine: Every moment gets better
Simon/Princess Jasmine: Every moment gets better
Both: I'll chase them anywhere
There's time to spare
Both: Let me share this whole new world with you
There's time to spare
Both: Let me share this whole new world with you
Mommy/Aladdin: A whole new world
Simon/Princess Jasmine: A whole new world
Mommy/Aladdin: That's where we'll be
Simon/Princess Jasmine: That's where we'll be
Mommy/Aladdin: A thrilling chase
Simon/Princess Jasmine: A wondrous place
Both: For you and me
Simon/Princess Jasmine: A whole new world
Mommy/Aladdin: That's where we'll be
Simon/Princess Jasmine: That's where we'll be
Mommy/Aladdin: A thrilling chase
Simon/Princess Jasmine: A wondrous place
Both: For you and me
*That's not embarrassing right? He won't be thoroughly upset with me in 10 years time?*
So this is it dear friends. It's the final post for a while, I think. We're going to try and go back to some semblance of normal. Our own special brand of it (with theme songs from Disney slowly fading away) and school and yoga and community gatherings coming back into the picture.
The Solstice is tomorrow and the Fitch-Jenetts are perfectly poised for the return of the Light.
Blessings abound.
Soooooooooooooooooo much love for all the support and fellowship. If there's anything I can ever do for you, please let me return some of the love somehow or someday.
Our Team ( minus some key players but still)
Last day shenanigans with Wall E and R2D2 visiting
Boy meet Robot
Boy touch robot lovingly
Boy ask for Robot for Christmas
Simon with his favorite (bordering on obsessive love) nurse Monica
Our room
A major hangout
LOVE YOU CHOC!!!
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