"May the God of HOPE fill you with all joy and peace as you trust him, so that you may overflow with hope by the power of the holy spirit."

~Romans 15:13

Saturday, February 27, 2010

Speaks for itself

I believe that she
is perfect.
I am a tad biased!

Monday, February 22, 2010

Sometimes the most unlikely people become heroes

Do you know where the title of this post comes from?
It comes from a movie made in 1985.
I remember watching this movie over, and over, and over. I fell in love with The Mask for so many reasons. (I was 7 when the movie came out.Yep...I told my age!) I remember being intrigued with all the side stories.
A little back story...Rocky has a major facial deformity and he is the most amazing young man. He is kind, considerate, passionate, caring, giving...and he never lets his difference slow him down.
Midway through the movie Rocky goes to a camp and meets, Diana, a beautiful blind girl. She explains to him that she needs to touch to "see." She asks Rocky if she can touch his face so she can "see" him in her mind. Reluctant he agrees. Diana slowly moves her fingers across his very large face. Rocky is panicking inside, but Diana is smiling. She tells him that he is beautiful to her.
As the story goes on...Diana tells Rock she doesn't understand the differences between hot, cold, billowy, white, red, blue...the list goes on...and on...and on. So, Rocky comes up with some very neat ideas on how to help Diana "see" this world better. After touching and feeling several items...Diana says, "I understand."
I want to be Lilah's Rocky!
I am asking everyone who meets Lilah to try to be her Rocky. Lilah needs to hear what our world is really like. She needs to "see" it as we see it.
Imagine if you will...
I don't know Lilah...I am asked to watch her...I go about my business and treat Lilah as if she can see everything I am doing and why I am saying and doing certain things. I pick her up, without a word, lay her on the changing table, take her clothes off and am amazed at why she is crying so loud and so strong. I change her quickly and become frustrated because she is still crying.
THIS is where the Mama bear comes out in me....
If I were to blindfold you and all of a sudden lay you down and begin to take your clothes off, without telling you why...wouldn't you...um...for a lack of better words...FREAK OUT?
Imagine how Lilah feels. Imagine what is going through her head as she experiences life.
Imagine what she misses...that we take for granted because we can see.
  • how did food get on my tray?
  • does food come from the sky?
  • why is she putting me in this water?
  • I like to splash...this is fun. What is this?
  • This room sounds different. Where are we?
  • I don't hear my Mommy. I am scared. Where is she? Where am I?
  • I hear Alex laughing. What makes her so happy? I laugh to because it must be great.
  • I hear Eli scream. I am scared. I scream too.
  • I hear Sammie loudly asking for a toy. I love her, but I am worried when she's loud.
  • I feel my Daddy's "wiskies" and I giggle with excitement. I sure do love him.
  • I hear my Mommy's voice. I kick my feet with excitement. I feel safe with her.

The list goes on...and on...and on.

In order for Lilah to really understand. We must talk to her. Talk, talk, TaLk, tAlK, TALK!

I want her to experience this life to the fullest. I want her to be confident knowing she can face any obstacle set before her. I want her to "see" it all.

And what I know...from Diana in The MASK ...is...that Lilah will "see" this life far more amazing than we have ever seen it ourselves.

Friday, February 19, 2010

To know her more

I am a very determined Mother.
I will NOT stop until I have gone the extra mile for my children. All of them. God trusted me with each one of them. I want to honor and glorify Him in everything I do.
After many obstacles, roadblocks, set backs, hurdles, etc. I have learned more SAD truths about the services for Visually Impaired Children in the state of Georgia. I called the Savannah Association of the Blind and learned that there is only one, yes...you read that correct, one O&M specialist in Savannah....and she doesn't have any openings.
So....I will continue to be Lilah's "Team Captain."
I enrolled in the Hadley School of the Blind parent education classes.
I am taking on-line classes to help me be a better advocate for Lilah AND to understand what my visually impaired child needs, wants, understands, processes, etc. I am ready and willing to learn what I need to for the sake of Lilah.

Thursday, February 18, 2010

How does she do this?

There are SO many things that Lilah does that make me wonder.
Recently, Lilah has been doing a very normal baby/toddler activity. I use the word normal very loosely...and somewhat apprehensively. But in this instance..this is something that all four of my children have done. I never...never in a million years thought that Lilah would do this.
Lilah has begun to find the smallest pieces of ...anything...on the ground...and she picks them up.
She will be sitting up, she will then make a slight turn, she will look down at the carpet...
AND...
VOILA!
She does this:




My very first thought is NOT, "Oh my goodness, please don't put that in your mouth."
nor is it, "Where did that come from?"
nor is it, "Wow, I really need to vacuum." (even though I need to!)
No...
My first thought is, "Did she just see that?"
then...
"YES SHE DID! THANK YOU GOD!!!"
Something so small, something that irritates other Mommies to no end, gives me GREAT joy!
I know without a shadow of a doubt that she can see those tiny little pieces. How she sees, how great it is, what clarity, what acuity, etc....that isn't as important to me.
Lilah is a miracle. No doubt about it.
I thank the Lord for each and every moment!


Wednesday, February 17, 2010

What is she thinking?

I love watching Lilah.
I look at her and wonder what she sees, feels, processes, etc.
There are many moments when I find myself asking the same question...
"What is she thinking?"
I am on a mission to help Lilah in every way possible.
I want to learn all I can about her. I want to understand how she processes everything.
For example: Lilah LOVES to scratch. I have so many thoughts..."When she scratches a certain texture is it because she likes the sound? The feel of it? Does it give her a sensory response? Is she learning something through this? or is she just scratching?"
I am determined...DETERMINED...to help her.
To the end of the earth..that's where I will go to find a way to help!

Tuesday, February 16, 2010

After Nap Hair

After nap Lilah's hair is always very WILD!
Here are a few views of her "do."

Her eyes are not closed. She is focusing on an object.

Look at all of those teeth. 5 new top teeth coming in!

No matter what her hair looks like she is always beautiful.
ALWAYS!



Monday, February 15, 2010

More Mobile

Today Lilah showed off her new skills at PT...



video



Just look at how she flows from one movement to the next.



Each motion has taken weeks and weeks for her to master.

I am so proud of her.

Go Lilah GO!

Sunday, February 14, 2010

The perspective I have been looking for!

I just LOVE the Internet. Thank God for the Internet. REALLY. I am NOT joking.
Lisa and Kristen sent me to Barbara. Barbara sent me over to Terena. Terena just opened my eyes to a completely different way of thinking about how Lilah views the world.
PLEASE click HERE!
Thank you Terena and Queen Teen!

The beginning stages of...

CRAWLING!

video

video

Lilah's PT, Laura, is going to flip out!

Lilah has worked SO hard for this...

GO LILAH!

Thank you God for movement!

Saturday, February 13, 2010

Lilah saw snow!

Yes...it snowed in Savannah, Georgia!

Lilah giggled.
She LOVED the feel of it...even through the gloves!

Happiness.


Joy.



Contemplation.




Perfection!






Friday, February 12, 2010

EEG Results

This morning Lilah had her EEG.

The LAST of the "lets rule everything out" tests.

I prayed, but above all I trusted God's plan for Lilah.

Results:

Normal!

So, that's it!

No more tests. No more questions.


Monday, February 8, 2010

Perception

I love how the Internet can bring so many people together and is a great resource of knowledge.
Through a few different blogs I came upon Barbara's blog. Barbara is a PT/OT. She has great insights for all kinds of patients with a wide range of disabilities. She recently posted on vision.
Please click HERE to read her thought-provoking post.
Thanks Barbara!

Sunday, February 7, 2010

The way she soothes herself

I have frequently gone to check on Lilah while she's napping and this is what I find:

I have been curious as to how she can be such a Houdini at 14 months old..
AND
I use to wonder how she does this.
Here is the story:
Lilah is very tactile... Meaning Lilah uses touch to explore her surroundings.
She loves to put her hand inside my shirt and gnaw on her fist through my shirt.
In a way to soothe herself, she will take her left hand and reach over to her right sleeve. She then pulls on the sleeve with her left hand. She is trying to get her left fist inside her right sleeve to comfort herself. The harder she pulls to get that tactile sense, she will pull her entire right arm out of her shirt. I have often worried that she will choke on her shirt if it gets wrapped around her neck..so I check on her quite frequently.
At bedtime we roll her sleeves up so she has to work to get them unrolled and then soothes herself without removing her arm from the sleeve of her sleeper.

My little cutie pie certainly is a magician...of sorts!


Friday, February 5, 2010

What more can I do?

For the last few months I have been taking Lilah to therapy after therapy after therapy. Some of those therapies come to our home. Lilah has made great progress. GREAT progress.

I am the type of person who is always thinking.... what is our next step. (I was worried that this may be a lack of acceptance. Thank you to Joey, my Ga Pines rep, for calming my fears and helping me to see that I just want Lilah to get and have the best.) I have been researching vision services in Georgia... Teachers, Therapists, Preschools, Services, Plans, IEPs, etc.

Even though Lilah is only 14 months, I am constantly thinking about what she needs to help her. What can I do better? What have I missed or forgotten? What are we as Lilah's team(me, PT, OT, VT, Representatives, Coordinators, etc) doing that is helping Lilah? What are we as her team doing that isn't giving her the absolute best?

I have learned in the past few days that Georgia doesn't have a preschool for Visually Impaired Children(0-3). Georgia is lacking Vision Therapists and Vision Teachers. There aren't great options here in this state for visually impaired children. From what I have been told, and read ,and learned is... that most children with vision impairments have other disabilities, too. So the vision impairment is usually pushed to the back burner. Children like Lilah, that only have vision impairments, are kind of...forgotten about. I have been told many, many, many times that "it could be worse" or "you are lucky it is just her eyes." These things may be true to other people, but in our home...this is our life. It is a HUGE deal to us. This is all we know. I do not know what it is like to live someone else's life, have someone else's child, or do what they do. I would never judge them, what they do, or how they cope. I am not asking for pity. I am asking for answers. For HELP! I am asking for Lilah to be able to receive services, treatments, therapy, help, etc. that she needs. That she deserves. Vision is what motivates us to change, move, laugh, play, talk, act, etc. With a lack of vision...delays occur.

Lilah is 14.5 months old and she is not crawling....yet. She is not pulling herself up....yet. She is not babbling very much....yet. Lilah isn't "doing" what they would like her to do. YET! BUT she is making amazing strides.

So my frustration is with the lack of services offered to visually impaired children in my state. My frustration is not, in anyway, shape, or form with Lilah. If Lilah never crawls, pulls herself up, walks, talks well, etc. that is perfectly fine. But I, her PT, OT, VT, Doctors, etc. know she will do those things. We all want the best for her!

Besides move to another state, what options do I have to help Lilah get the most and best she deserves?

Thursday, February 4, 2010

Another Milestone

When Lilah was born my mind began to race with questions, thoughts, how-tos, what-ifs...my brain went into overdrive. Having not known of her disability before birth, I didn't have time to prepare. When she was placed in my arms...Mommy Mode kicked in. Feeding, changing, loving, and bonding.

One of my concerns was whether or not Lilah would reach certain milestones because of her visual impairment. Having a child with special needs was new to me. I was learning. I asked questions, begged for more information and help, but was still so unaware and yet at the same time I am a MOMMY....My first and most important priority is to love my children with all my heart, figure out their unique needs as a person, and love them according to their personal love language.

I remember thinking about little things...crazy, small, out of the blue...where in the world did this come from type thoughts..."Will she smile?" (because she's happy or because like sighted children she is mimicking), "Will Lilah know when I leave the room?" (Separation Anxiety) "Will she be able to look in the mirror and know how beautiful she is?" "Will she crawl?" "Will she walk with or without a cane?" "Will she walk at all?" "Is it more than just her eyes?" "Will we ever really know?"
The questions went on and on and on....


Yesterday, Lilah did something I have never seen her do. I was playing with her on the floor. I heard Sammie ask for something from the other room...so I kissed Lilah's head and proceeded to get up. I barely made it to the hallway and looked back and there Lilah was starring at me... crying.

She didn't want me to leave. She officially has Separation Anxiety. Something so basic, so little, so small... something that drives other Mama's nuts...warmed my heart. She is growing. She is learning. She is aware. She knows what she wants and that is a VERY good thing!