Opposites

“Each second we live is a new and unique moment of the universe, a moment that will never be again. And what do we teach our children? We teach them that two and two make four, and that Paris is the capital of France. When will we also teach them what they are? We should say to each of them: Do you know what you are? You are a marvel. You are unique. In all the years that have passed, there has never been another child like you. Your legs, your arms, your clever fingers, the way you move. You may become a Shakespeare, a Michelangelo, a Beethoven. You have the capacity for anything. Yes, you are a marvel. And when you grow up, can you then harm another who is, like you, a marvel? You must work, we must all work, to make the world worthy of its children.”

~Pablo Picasso (Spanish Artist and Painter. 1881-1973)



As an artist these words resonate deep within.
As a parent, deeper still.
Then when you add teaching artist......

Icing on the cake.

I have been trying to figure out how I could end up with a child
that is such an extrovert- when I feel like an introvert
A child that is legally blind -and I am an artist.
A child that I am struggling with the powers that be to have her learn Braille, and I am a book reviewer. I have shelves and shelves of books in print.
It's amazing to me that the things that are my passion,
Are the areas in her life that She needs help in the most.
And vice versa.


Grace and papa having a tickle fest.
(Pre RSV. )
I love her showing him her belly button.
Then sticking his finger in it! She kills me

RSV

If you are wondering where we have been this week and don't see my FB updates,
We've been battling RSV.
This has not been fun my friends.
I had an appointment scheduled for myself so instead of papa going with me to hold my hand
He took little G to her appointment and then stayed home to care for her.
She is a literal mucus factory,
Yuck, yuck and yuck!
Fever, mucus and coughing.
Can we all say miserable?!
We added breathing treatments with the nebulizer because of wheezing
It's been a looooong time since I've done this.
You add the severe anemia,
I am dragging my tail behind me
We've been watching lots of Polar Express.
"Train train" she signs.
(See photos below of her in her Santa hat! Last night in a high from ventolin!)
It helps to get into character when watching movies!
It's also nice sleeping sitting up in mamas arms.
The days have been long and hard
But filled with love and joy-
I wouldn't trade the pitter patter of little feet in our house for anything!

A few grace filled moments

Lil G had a big day.
We were glad to be able to attend ladies bible study.
We haven't been studying the Bible per-se
The book is called "unglued" by Lisa Tyrkhurst.
A slow starter but filled with awesome helps for mamas
Burning the candle at both ends -on the verge of "loosing it" daily.
Today was the last day for that study........
I was touched when Lil G did her happy dance as we got out of the car
and headed up the sidewalk.

From there we went to get her new glasses.
I can't say enough about the awesome staff at our optometrist office.


Then we grabbed lunch and headed to ballet.
Happy dance number two.
She was pretty difficult.
Used up about every ounce of patience I had left.
But as her dance teacher said,
"we are all allowed to have a bad day every now and again. Today is her day."
Here are photos of her in her new red Silhouette glasses and an unexpected nap.
She quit moving for a few minutes and it was like someone flipped the switch!
You could count the number of times I've held her while she slept on one hand.
An unexpected blessing for today.

Visual Impairment and Blindness- my current perspective

I'm taking time away from playing with my precious girl,
And making phone calls and typing emails on her behalf.
I wanted to write a few minutes about what things "look like".
You know, Lil G was blind with her glasses on LONG before we knew.
This is really no big deal for her.
But it looks differently from this side.
Since Lil G is enrolled in a private school
It makes things very complicated.
It feels like the public school system likes it to be complicated.
I understand there are laws, processes, ways to do things.
It just doesn't make sense that it should be this hard for a child to get the visual aids
Needed to learn
Some pre Braille materials and therapies.
Even the division of blind services has nothing to offer.
I met with another agency last week and they have promised to advocate,
they are shocked at the roadblocks we have faced.
"It's all done through the public school system."
Each day I am giving up hours of my day,
To make phone calls and send emails.
It doesn't make sense.

We went to Emory pediatric opthamologist a little over a week ago.
Thankfully they corrected the forms.
The Dr didn't understand why her corrected vision was written wrong.
Without the correct numbers we can't get help,
"It's only the difference I one line on the reading chart." She commented.
(It's not my fault that is where the line is drawn to define legal blindness.)
We have surgery scheduled for Mid February.
I keep reassuring myself that her whole kindergarten year isn't going to be a wash.
None of this mess is changing what is going on. We are still very busy learning.
I am wondering if the people on the other side of the equation even think I would consider doing things their way after being treated this way by their system?
You know what the answer would be if I was asked right now,
At this very moment.

A retirement party and Christmas Eve- what do they have in common?

"I think it is more important to celebrate a birthday than a successful exam, a promotion, or a victory. Because to celebrate a birthday means to say to someone: Thank you for being you. Celebrating a birthday is exalting life and being glad for it. On a birthday we do not say: Thanks for what you did, or said, or accomplished. No, we say: Thank you for being born and being among us.“

Henri  Nouwen, Here and Now   

A month  ago, Lil  G and I went to a retirement party with papa

The lady we were celebrating has a special place in our hearts.

She asked about our adoption quite regularly, She really cared.

She was diagnosed with a brain tumor 

and was under going surgery and chemo 

when we finally got the go ahead to travel to Ecuador.

She didn't think she would ever get to meet Our Lil G in person.

When papa told us about the tumor returning back in the Fall

 I didn't really think twice about it.

We knew it was not if it would return, 

but when, with this kind of tumor.

I just had no idea it would be terminal.

"The best Chief to work with." as Miss Liz calls him, 

sometimes forgets that mama isn't in the loop.

I had no idea the retirement party was a rush job,

 this party might be the last time Lil G and I get to see her

 this side of eternity,

Until we were sitting there laughing and enjoying friends

Waiting for Miss Liz to arrive.

I also had no idea,

Miss Liz and lil G now have something in common.

Miss Liz lost her vision in one eye during the last surgery,

And most of her vision in the other eye, 

 Miss Liz and Lil G are both legally blind.

Near the end of the party, Everything had gotten quiet 

 I felt it was time for Lil G and I to go say hi.

Time for lil G to share a hug or two.

 I prayed real hard before we went up.

Sometimes situations like this have unexpected results,

 lil G might yell "Nooooooo!" At the top of her lungs, 

she might even backhand someone if she is put in a stressful situation, 

Much to my horror.

I am learning to not take it personally.

It is not a reflection on my parenting skills. 

As we sat with Liz her daughter took some photos 

 Lil G warmed up to the situation. 

She kept signing "happy birthday" over and over.

 I finally mustered up the courage to sing happy birthday to Liz with Lil G.

In front of a crowd of people.....

 We barely caught our breath before Lil G was  begging to sing Jesus Loves me. 

 Liz wept.

 On our ride home with Papa we talked abut what happened ,

 it seems he wasn't in the room.

 He told me about how Liz has felt like she is being punished. 

That she is sick because she did something wrong.

She feels like God is angry with her.

 I am hopeful that somehow a few songs sung by an innocent child has a way of healing the hurt. 

That she knows she is loved. 

Her life has meaning and a purpose.

Fast forward to Christmas Eve. 

The service is over, the candles have been passed out 

and Lil G keeps signing"Happy Birthday" over and over. 

We are singing a traditional Christmas Hymn 

and Im choked up. 

I lean over and assure her, 

"yes lil G. It is a happy birthday." I say

" We are celebrating Jesus' birthday." 

The hymn ends and the pastor pauses,

God sneaks up on me

 "I want to do something a little different, 

lets sing Happy Birthday. 

After all..... It is our Saviors birthday we are celebrating." 

What a moment........

I know this is a little late.

I hope you don't mind me posting it.

We've been having some technical difficulties .......

Happy New Year!