07 September 2012

Feeling a little lost today.  Working on a vision statement for LEND this morning.  Much more emotional work than it was two years ago.  Well, too years ago vision was not my only concern.  Sitting through part of class, enjoying a presentation on early childhood development, but then feeling the descriptions of healthy development like punches in the gut -- Babies “elicit the emotion of tenderness and a caring response to them from other humans, especially and specifically from their mothers.”  “There is no such thing as a baby, there is a baby and someone.”  We are born with the need for relationship.  The importance of relationship and quality of experiences.  Early development lays the foundation for life.  Amazing how personal it all is when your child has been deprived of all of it.  I can feel the same way when I watch parents interacting with small children.  How would have enthusiastic parents, loving words, and an attentive caregiver formed my girl?

It breaks my heart.

The class was not responsive.  I love enthusiasm in a class and seeing the lack of it makes me want to jump in.  Help the speaker.  Cheer on the lesson.  Answer the questions, damn it!  At the very least.  

Then, in the middle of class, I had the suspicion that the therapist who was supposed to get Julia from the school bus was not going to be there.  I had texted her in the morning to make sure she would be and she never responded.  I could not let it go to chance and so missed the last hour of class.  Sure enough, I received a text after Julia got home that the therapist was not going to make it today.  I breathed a sigh of relief that I went with my impulse.  Julia is not ready to be left off the bus without someone to open the door and take care of her.  

No harm, no foul, but a close call.  

First swipe at a vision statement:  My vision is “to be of use.”  The idea is easy, hard won, but easy.  The execution, not so much.  I have no idea where this idea takes me.  Hyperbole.  I want goals to chart a trajectory, and I am uncomfortable with patience and ambiguity.  Absolutely no hyperbole there.  I balk at living the questions as Rilke advised his young poet.  And yet, questions are what I have -- what is Julia’s future?  Will we ever have a meaningful conversation?  Will I ever put down roots again or live close enough to some loved one to call a place home? Will I ever find and be allowed to work at tasks that I care passionately about and that form a right livelihood?  How far into the world around developmental disabilities can I go?  How far do I want to go?  What I have is the present.  Today and today and today.  I would like my days to include contemplative practice, writing, learning, teaching, gathering groups together and engaging in conversation, and some fun. 

All this searching and all the ambiguity is getting tedious, and so, I have to hope that the light at the end of this tunnel is soon shining bright.  

2 comments:

Corey Wilkey said...

keep on hoping :) you'll get there.

I know its been ages since i stopped by your blog but i am happy to see that you are still writing, even if it is a darker time. :) Blogging always helps clear my mind.

Jenna said...

Hi Julia

My name is Jenna. You are a brave courageous fighter. you are a special miracle from god, a gift from above, earthly angel,and you are a smilen hero. You are full of happiness, life, smiles, joy, fun,love, and spunk.

I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays.

I wrote this poem

Each of us are Special

Each of us different,

No one is the same

Each of are us are unique in our own way,

Those of us who have challenges, we smile through our day.

Those who of us who have challenges, we smile through our day.

It doesn't matter what others say

we are special anyway.

What is forty feet and sings? the school chior
http://www.miraclechamp.webs.com