Thursday, January 10, 2013

Blue Eyes.

I wasn't sure if I wanted to write this post or not.
It's more of a personal topic, but oh well, sometimes writing and venting are good for you, right?

This is my sweet daughter Afton:
You've probably seen her pictures on here from time to time.
She is 3 years old and has the most amazing blue eyes and red hair!
She is brilliant and has an incredibly advanced sense of humor.

Some background:
At 18 months old, she couldn't say "Daddy" or much else.
At 24 months old, she still couldn't say "Daddy" or much else.
She had 5 words. Single syllables.
She was able to make single sounds, but when the time came to put sounds together to make a word: 
her brain let the wrong sounds come out and she would get so frustrated.
  She was diagnosed with Apraxia of Speech.
I was devastated. 
I felt so sorry for her (and myself) and I went through emotions ranging from anger to guilt to sorrow.
ALL I wanted was for her to look at my husband and say "Daddy".
After about a week of this pity part I decided it wouldn't defeat us.
I followed the therapists orders, worked with her, and prayed like crazy.

At 28 months, she said "Daddy". 
Not "Da-da". Daddy.

Fast forward to about a month ago.
Her speech has been improving wonderfully and she has 50+words
and is only missing a few letter sounds now, but we are happy with her progress.   
More people outside the home can understand her now.
The day she said "cheeseburger" we called just about every person we know just so they could hear it! 
They all understood how amazing it was for her to form such a difficult word and say it so clearly.

I had a friend come visit one evening that I hadn't seen in months.
My kids were watching a movie while we chatted. At one point my friend stopped talking and looked at Afton for a moment.
She then asked me "Does she always do that?"
"Do what?"
"Watch tv from the corner of her eye."

Now, we knew she did this and her pediatrician had said it was nothing to worry about, it was probably just a divided attention issue.
My friend however, had a different opinion. Her younger sister had done the same thing and it turned out she had a severe eye problem and nerve damage. 
I decided it might be worth looking at again.

Today:
I sat in a vision therapists office while they spent 45 minutes examing Afton. 
This was the second office in a week. This was a specialist. This wasn't "she just needs glasses".

Afton cannot see things in front of her.

She can only see out of the sides of her eyes.
(Hold your fist in front of your face and you'll see what I mean.) 
She can't physically look up without losing control of her eye muscles.
She is severely far sighted.
She will need therapy and possibly surgery.

Once again. I'm devastated. 
Her big, beautiful, blue eyes are not perfect. 
I feel so guilty that I didn't look into this sooner
So guilty that I took her to 3D movies that she couldn't see. 
Guilty that I'd get frustrated while working with her for not looking at me when I talked to her.
Guilt for not realizing she was in trouble and needed help again.
 
She looked so sad and defeated and scared and nervous and confused at the exam.
All these strange games and people and lights.
She kept rubbing her eyes from the pain the tests caused her, but she did everything they asked of her.
She looked where they told her to, answered their questions, and tried so hard to see what was put in front of her.
 And she didn't complain once.
No crying, arguing, or stubbornness. 

At the end they let her pick out her first pair of frames.
They offered her pink, glitter, sparkles, diamonds.
She said "No thank you" to all of them.
Finally, after I asked them to give her a moment, she walked over and picked up a plain, simple pair.
Nothing special, not even purple (her favorite color).
She asked me to put them on her and looked in the mirror.
A small smile appeared on her face and she whispered "Am I a big girl now?"

A year ago I was afraid my baby would never say two syllables.
 Two hours ago I feared she would never see the world clearly.
This little girl is amazing.
I am so blessed to have her.
Her conditions are minimal compared to what some children have to face.
She doesn't mind repeating herself or trying to reword things so people can understand her.
She doesn't need sparkly glasses to make her realize she needs help seeing.
She is just so willing to do the work needed to help her!
 
We go back on Tuesday for a consult and therapy plan.
I just pray this doesn't mean there is something wrong on a neurological level. 
Having her speech and eye conditons combined indicate there could be. 

So, I've decided to not be angry or sad.
Afton won't get help or healing with that emotion running around.

I may not be posting much for the next month as we try to figure out what she needs 
and gets used to the equipment and therapy schedules.
Her older sister is having her tonsils out this month as well, so we will be extra busy!
     


  


               
       

7 comments:

  1. i am so glad you shared this. i am so moved and my heart goes out to you, knowing that everything is going to be ok. afton is so gorgeous and created so perfectly to be loved. i am going to pray. i have had many health problems, my kids have had some, and we all have deepened and grown from this. i hope i can encourage you if you choose to keep sharing this journey--you are not alone!

    smiles.

    michele

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  2. ♥ Love & prayers ♥ I'm so happy she has the best mommy to take care of her!

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  3. Oh dear, it is so brave of you to share this. But like Michele said, you are not alone. We are so lucky in this day and age to have amazing doctors, specialists and techniques to work with! That said, she is even more lucky to have such a wonderfully couragous and loving mother (and daddy!)

    Best wishes to you, Afton and your whole family.

    Thanks for sharing this on Photo Friday- she is beyond anything a beautiful child and from your post that is revealed both inside and out.

    Blessings.

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  4. God chooses the most amazing parents for His beautiful children. Afton is lovely and we know He has a plan for her. Thank you for sharing this. I have a granddaughter with Spina Bifida and am amazed at how much therapy has helped her. God bless you and your family. I will be holding you up in prayer. Regena in TN.

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  5. Afton what a lovely name for this beautiful ginger (being one myself) with gorgeous blues eyes
    She is just perfect and will grow up to be an amazing person. With wonderful loving parents how could she not.
    This will only make her stronger, has already I think.. Thanks for sharing with us..

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  6. She is just beautiful!!!!!!!!!!!!

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  7. What a sweetheart! You are an amazing mommy, Chris!

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