I want to give this to you

cup this in your hand boy
hold it tight
I want you to keep this
forever
this is my truth
for you

despite all the tears
despite all the effort
despite how everyone
wants to change you
to take you, the little mute boy
and mold you, into the 'normal' boy
just remember this
despite it all
this,
this song is my truth for you

I hope you know that God and nature made you perfect
JUST THE WAY YOU ARE
I hope you know that God and nature made you good enough
JUST THE WAY YOU ARE
I hope you know your daddy (& mommy) loves you
JUST FOR WHO YOU ARE
I hope you know that God and nature made you a bright shining star

(lyrics to 'Vanessa' by Fifteen)
thank you thank you Jeff Ott for giving this wonderful amazing truth full of beauty for anyone to hold on to.

Happy

Liam taught himself to say "Happy" he has been running around the house repeating "haa-pee, hah-pee, haa-pee" When he says a word he repeats it over and over and over. I think he is trying to train his brain.. or keep himself from "forgetting" how to say that word. With his disorder.. he might say a word once, or a few times, and then not be able to. Or he might say a word and then you ask him to say it again, he tries, but he can't. He moves his mouth all around, makes painful looking faces but can't get it out. He has busted out with entire sentences before. When he was 3, he was watching Star Trek with his Dad, and one of the guys was about to hit one of the otherTrekie dudes.. and Liam busted out and said clear as day
"Oh no !!! Don't do that ! "

But, happy. I love that he wanted to say that word. Happy ! It's a good word to be saying.
I think maybe I am getting into a more positive place with Liam's difficulties.

Lately he has been exploding with new words. And he is able to "keep" them. He can say..

Hi, Mom, Hello, Dad, Me, I, Help...

And he can approximate even more.. Juice, Orange, Elliot, Kitty, Potty, Bye-Bye, Please, Eat... there are more.

And he is learning more signs each and every day. In American Sign Language he does over 500 signs now.

turns out

that i wast just agonizing over nothing because i went to the meeting and now Liam is going to have a sign language interpreter at school with him which is what i felt was needed.

and to clear any misconceptions up.. this blog, is meant for me. and meant privately. and in fact i think i may have set it to private. but if you're reading this then i suppose it might not be at the moment.
but what this blog really is about.. is me being able to compartmentalize all the negative feelings and all the pain i have for my son Liam and all of his trials.. because i try not to show any of this pain to him..

Tomorrow is the day that will change his life forever.

I have been waiting. It's been cloudy, it's been foggy. Tomorrow the fog will lift. I think it's been foggy two weeks. I don't know. It seems like years. Every day since I knew tomorrow would come- it has consumed my every thought. Almost. I tried writing it down, I tried eating it up, I tried giving it away. This thick cloud of warm, cold, salty fog will not leave me alone. It's sitting in front of me constantly, following me around. Sometimes it goes inside my stomach, my back, my head. Sometimes it just sits in front of me. The fog has the thoughts. And it won't stop following me every place I go. Even into the shower, in the car, while cooking, and worst- while I try to sleep. The information in the fog can fit into about 4 pages typed size 10 Arial. I know because I typed it out. I thought I could move the fog from me to paper. It didn't work, well, exactly. It is still in my mind constantly- what to say, how to say it, what they might say and then what I will say back. I know that I will get in there. I will get intimidated. I will forget what I wanted to say. I will forget everything. And I will just give in. I won't do what is best for him. That was part of the fog. So I have been trying to avoid forgetting what is so important, for him. So maybe I created the fog, but I can't get rid of it or running it through my mind in non-stop feed. Breathing it in, running my fingers through it, molding it, pulling it out, and pulling it in. So I created the fog, But unintentionaly. I mostly wanted it to go away, but it wouldn't. Sometimes the fog was louder. Sometimes it blasted bad music that you never liked. Sometimes it was calm, sweet, the music that makes you cry, lightly. No one else can see the fog. I tried giving it away. But it is only mine. Now I have put the fog down on paper. It's still fog, but I've got it pinned down now. And I will have that paper in the tiny room with me. My armor. My protection, from myself and them. To help me remember.


Tomorrow is the day that will change his life forever. We will sit down, and decide what method of alternative communication my 4 year old mute little boy will start using at school. I won't go into if this will be forever or if he will ever speak. He can hear. He can't speak. and I don't know if he will. I am not attaching a 'probably' or a 'slim chance' or any other descriptive like that for defining his future. Though some professionals have- and they have conflicted in their theories.. But they don't know. I'm not sure if even God knows yet. And so I am not going to go there.
But this day, this day, this day is huge.

My life is living this song, No Other Way (Jack Johnson)

When your mind is a mess
So is mine
I cant sleep
Cause it hurts when I think
My thoughts aren't at peace
With the plans that we make
Chances we take
They're, not yours and not mine
There's waves that can break
All the words that we say
And the words that we mean
Words can fall short
Can't see the unseen
Cause the world is awake
For some body's sake now, please close your eyes woman
Please get some sleep

And know that if I knew
All of the answers I would
Not hold them from you'd
Know all the things that I'd know
We told each other, there is no other way

Well too much silence can be misleading
You're drifting I can hear it in the way that your breathing
We don't really need to find reason
Cause out the same door that it came well its leaving its leaving
Leaving like a day that's done and part of a season
Resolve is just a concept that's as dead as the leaves
But at least we can sleep, its all that we need
When we wake we will find
Our minds will be free to go to sleep

And know that if I knew
All of the answers I would
Not hold them from you'd
Know all the things that I'd know
We told each other, there is no other way

And the chances we take ? What are those ? I didn't think you would really want to know. The choices: American Sign Language interpreter or AAC device (speech synthesizer). We've made our choice. Now we have to stand up for it. I've got my armor, my paper, my words.

In My Language

Watch this all the way to the end. Amazing.

poem

The Little Mute Boy
by Federico García Lorca
Translated by W. S. Merwin

The little boy was looking for his voice.
(The king of the crickets had it.)
In a drop of water
the little boy was looking for his voice.

I do not want it for speaking with;
I will make a ring of it
so that he may wear my silence
on his little finger

In a drop of water
the little boy was looking for his voice.

(The captive voice, far away,
put on a cricket's clothes.)