Tuesday, February 26, 2013


/aNG(k)st/ Noun
A feeling of deep anxiety or dread, typically an unfocused one about the human condition or the state of the world in general.
A feeling of persistent worry about something trivial.
Synonyms: anxiety

I went to an adoption ceremony today.
Sometimes I wonder what gets into my head to lead me to believe I can do things like this
Outings With Lil G, on my own.
I forget that it's all I can do to get dressed and out the door without feeling Like I had been hit by a Mack truck. No joke.

I really wanted to support this friend,
It was scheduled for 3:30 pm so not like it was 8 am or something.
I left around noon, we grabbed some lunch,
I ran by a store to purchase another fitted sheet for our bed with their 20% off coupon.
Picked up a gift real quick since it was a last minute plan.
(I didn't know the ceremony was today till last night)

We had to find parking, then oh my gosh,"do I even have any change?! " for the meter.
The wind was crazy. It made me feel frazzled with every hair blowing a different direction.
Purple hair I might add.
I .kid. you. not. (Thank God it's semi permanent. Didn't have time to wash it with color oops. )
Where was I.....
Okay, so I locked G in the car , radio on and bucked in her carseat to jog three car lengths down to pay the machine and get my receipt. (Whoever thought of this idea is not a parent of a child with special needs) jog back, got the stroller, coats on, camera bag, huge mom purse ,and child)
Walked/ran up the sidewalk
inside the door - a fiasco in itself!
to find security checks, duh.
Welcome to reality.
So the judges chambers is on the sixth floor.
Have I told you I have a fear of heights?
There was no time for that. I pushed the number six and tried to pretend that I was holding my husbands strong arm. Got off the elevator to see the family waiting to hear, " oh we are so glad you made it! The judge is ready. I was just getting ready to call and see where you were.
If Id known I would've left 30 min just for parking and getting inside!

So we enter the chambers and Lil G is full of herself.
I'm not joking when I tell you I asked her to use her inside voice a thousand times.
I was so embarrassed and still wearing my leather coat,
I broke out in a sweat and could literally feel my whole body radiating.
Call it what you want, a personal season, menopause, anxiety.....
It was all I could do to not start sobbing.
I felt like excusing myself. But I couldn't move.

We drove home. Complete silence.
No radio. All I said was ," mommy is not happy."
After sobbing for about 30 mins, while laughing.
Go figure. I still feel on the verge of tears.
Some days I just don't know how I thought I could do this.
I get taken so far past my comfort zone I don't know how I don't break,
Except for the grace of God.......
Some days it's all grace isn't it.......

Friday, February 22, 2013

Yarn Along

It's a rainy day,
Perfect for a hot cup of coffee,
Knitting in hand- pleat neck tunic by Debbie Bliss. (Knitting in the round)
And a new book , " Independent movement and travel in Blind Children".
So far it's been full of helpful information that sheds light into our situation.
Things unrelated to traveling with a white cane.
For instance,
I have complained many many times about lil Gs thrill over throwing her toys.
I had wondered if it somehow was linked to her being blind or being raised in an orphanage-
Or both.
I think I have found it! It's a process called echolocation.
I had never heard of this process so I find it very interesting,
A blind baby slapping their hand on the tile floor is using echolocation-
Using the echo, sounds, to gather information about their surroundings.
So, quite possibly she had learned this helpful way of throwing toys to learn about the toy,
Gravity, and the surroundings she happened to be in.
I have been working with her to redirect her - to change this behavior.
I am wondering now,
obviously throwing whatever happens to be in her hand at the moment
isn't appropriate behavior for a 7 year old.
But it seems like we are re creating the wheel somewhat with this child.
I am hoping that as we surround ourselves with parents of blind children,
as we learn more about Down syndrome, that we are able to determine what is best for little G.
Because truthfully she isn't typical, she doesn't just have Down syndrome. This is different and must be carefully considered. The whole person, not just parts.

The answers to the questions have been difficult,
But I am oh so thankful I had already pondered them -
What would this look like?
How would the answers change our approach, dreams, expectations?
Every once in awhile a deep aching sorrow swells in my heart,
My child is blind,
This is what our future looks like.
No more dreams of a future lens transplant.
No more Wondering if I am really making the wrong choices
by being adamant about Braille
Along with large print, and magnification.
And using a cane.......

So if you happen to be with me, don't be surprised if I randomly start sobbing.
I am really okay,
Just having a mama moment.

Friday, February 15, 2013

Happy Valentines day!

"When She Loved Me" -- Sarah MacLachlan

When somebody loved me
Everything was beautiful.
Every hour we spent together
Lives within my heart.

And when she was sad
I was there to dry her tears.
And when she was happy so was I.
When she loved me.

Through the summer and the fall
we had each other, that was all.
Just she and I together,
like it was meant to be.

And when she was lonely
I was there to comfort her.
And I knew that she loved me.

So the years went by.
I stayed the same,
But she began to drift away
I was left alone.
Still I waited for the day
When she'd say "I will always love you."

Lonely and forgotten,
Never thought she'd look my way.
And she smiled at me and held me
Just like she used to do.
Like she loved me.
When she loved me.

When somebody loved me
Everything was beautiful.
Every hour we spent together
Lives within my heart.
When she loved me...

A few posts ago I mentioned Lil G goes through phases in her "favorite movie" choices.
Lately it's been Toy Story 2.
I can barely breathe each time Jessie sings this song.
Being A mama again,
Adopting a child from an orphanage.
It is beautiful.
Hoping you had a great day showering those you love
With chocolate and treats, tangible and intangible "I love you"s
We did......l

Wednesday, February 6, 2013

Packages in the mail

"Free Matter for the blind"
That is what Lil Gs recent deliveries look like.
Please forgive me while I continue to process this.
A diagnosis of Down Syndrome is one thing,
But the diagnosis of Legally Blind.
A whole new ball game.
Don't get me wrong.
It hasn't changed much in "parenting 101".

I am just amazed at what this looks like.
You know, services that are a "legal right".
I have been trying to move full steam ahead
Making phone calls, sending e-mails.
Today I had a nice whirlwind conversation with someone at NFB.
(NFB- National Federation of the Blind)
It was very enlightening.
She confirmed my gut instincts.
And I don't even like when the thought comes to mind,
Much less sharing it.
Thankfully I didn't have to.
She knew, she has worked as a special Education teacher
and as a teacher for the visually impaired.
She could voice what I couldn't even allow myself to think.

It's all about perceptions,
If my beautiful little girl had one diagnosis,
It would certainly be an uphill battle.
Any of my fellow bloggers that still might happen to read my posts
with a child that has DS can attest to this fact.
But the fact of the matter is that she has three.
Line them up in a row.....
Well, now I understand their shock and amazement
When I nonchalantly mentioned she knew 400 ASL signs
And used them fluently.
How shocking that a little girl with English as her second language
A little girl with epilepsy
And Down syndrome
And that is legally blind
Could possibly accomplish such a feat?!
gasp! In two years no less!
Then in the same breath they tell me she is better off in their public school setting.
With trained professionals.
Please excuse my sarcasm.

Lets just say I am prepared to feel underwhelmed with the services they might decide to offer.

"Braille?! You would need a letter from her Dr stating her vision would worsen for us to consider that. " What?! Let me get this right she has only 10% of the vision the rest of us have. It has to worsen? "We will do the evaluations in her home environment where she is most comfortable to determine if she needs Orientation and mobility." ( learning to become independent in unfamiliar surroundings and how to use a cane.)

Let me tell you that she gets around pretty well for a "poor little blind child".
She's had her fingers shut in doors enough times and fallen and skinned her knees enough to learn how to avoid that scenario. But put her in a crowded mall, or walking on a sidewalk, she can't assume the lines or variance means nothing. She needs to be holding a hand or hear the words,"it's okay. " to know its just a pattern.
I will continue to march forward.
With or without their help or approval.

Monday, February 4, 2013

Favorite movie?

Lil G goes through phases.
Our first "favorite" movie was Finding Nemo,
Then she moved on to Beauty and the Beast,
Presently her favorite is Polar express.
(She will watch Monsters Inc and toy story 1 and 2)
I am happy her attention span has grown
And we are able to learn her preferences.
Here she is getting into character