Watching and observing, as if thinking: why so different? which way it is supposed to be, this adapted chair with it’s rigid edges and tight belts, or those little feet of them rocking the floor underneath?
My world, my words, my cries, my desires..they’re all silent. Their desires are loud and out there!
..oh yeey there is the light again, I love the secret laughs I have with it, but oh..their merry voices and dancing bodies seems fun..and more comfortable!
How I wish he can reach out to me somehow, something more than lefting up his head towards me and looking straight into my eyes.
Does he want me to walk away and let him be, or help him experience the floor rocking under his feet?
sometimes it feels like one of my foot is on a collapsing bridge, and the other on a standing one. And oh God it is hard.. to keep going on when every now and then the leashes whip to pull my spirit down.
Today, I dared and thought it:
It’s not about being fair or not, you just choose them randomly , then we kid ourselves thinking we are special.
You will be walking some night
in the comfortable dark of your yard
and suddenly a great light will shine
round about you, and behind you
will be a wall you never saw before.
It will be clear to you suddenly
that you were about to escape,
and that you are guilty: you misread
the complex instructions, you are not
a member, you lost your card
or never had one. And you will know
that they have been there all along,
their eyes on your letters and books,
their hands in your pockets,
their ears wired to your bed.
Though you have done nothing shameful,
they will want you to be ashamed.
They will want you to kneel and weep
and say you should have been like them.
And once you say you are ashamed,
reading the page they hold out to you,
then such light as you have made
in your history will leave you.
They will no longer need to pursue you.
You will pursue them, begging forgiveness.
They will not forgive you.
There is no power against them.
It is only candor that is aloof from them,
Only an inward clarity, unashamed,
that they cannot reach. Be ready.
When their light has picked you out
and their questions are asked, say to them:
“I am not ashamed.” A sure horizon
will come around you. Then heron will begin his evening flight from the hilltop.
“If I could let him be the boy he is, and let go of the boy he may have been.”
Very strong words and maybe a foolish hope.
How could she? When she’s thriving throughout the days, exhausting her mind and body to make it better for him!
But how would one make things better? By forcing a change, or by allowing the flow to pour in whatever direction?
Does she dare to just stop…and let him be?
Wouldn’t she slap her face because one day she simply didn’t know how to continue?
She knows that he is himself, but what if he still has more in?
I guess all you needed was your own bed and room to calm you down. And probably also the fact that you don’t have an NG tube any more.
On Tuesday, June 7th,2011 you got your G tube insertion.
The operation went fine and you tolerated feeds after 12 hours very well so you were able to go home tonight.
However, what made things challenging was the dissapointing fact that the “Ketogenic Diet” still isn’t well recognised at a big hospital as the SickKids Hospital.
Your father and me had to question every act the specialists wanted to do because simply none of them showed their full understanding of how critical your ketogenic diet is for controling seizures.
It felt like we were dictators who wanted to suppress any saying or act!!
But all we were doing was preventing you from the harm of giving you ignorantly any carbohydrates.
We got things under control and nothing was given to you without first checking with me or your father.
I have to say you seem so delighted that the NG tube is finally out 🙂
Tomorrow is going to be our first day alone with the G tube. I hope things will stay fine and no complications.
Sweet dreams love.
I’m writing to you while you’re sleeping on my shoulder in the emergency department at SickKids hospital, room 22.
You’ve been admitted to the hospital because you’re dehydrated due to not drinking enough fluids. And since you’re on the ketogenic diet and one of your meds have the side effect of kidney stones, enough fluids intake is critical for you.
So far they are helping you out by giving you fluids through the IV. They’ve tested you for kidney stones, you’re fine 🙂
A new plan will be discussed tomorrow morning.
Hope you and I will have a good sleep tonight.
You have a new buddy now. His name is tag junior. He likes to read books with you with many different interesting voices and sounds. You love him. Honestly I do too 🙂
Reading time is so much fun for you with your new buddy. He greats you with your own name each time you turn him on, wherever you place him on a book he makes fun sounds,he sings, he imitates animal sounds, he read alphabets and teaches you about colors and shapes and so many other fun and educational things. And when you want to say goodbye for him he wishes you a wonderful day 🙂
It’s such a cool tool to enhance reading time.