ENOUGH!

Tuesday December 28th at 9:15 AM in preparation for her MRI, I finally came to my breaking point. As I held Lilah down and the nurses tried to find a vein, I prayed and prayed and had a "GUT CHECK!"

One vein after another the nurses blew... 4 TOTAL!!... I cried so hard realizing that I am putting my child through all of these tests. For what? Yes...that is it...for what?!?

So some PT can have her "happy day" that yes, indeed, Lilah does have some "thing"? Am I helping her or hurting her? Do we spend more time in therapy than at home?


Each time they "test" Lilah the nurses seem to blow her veins, then the Doctor will come in and rescue her and find it on the fifth try.
Next time I am asking for the Doctor RIGHT AWAY!


I look at this face...
and I think to myself, "Does it really matter the "name" of it? What if it really is NOTHING more than my child is visually impaired?"

See, I research...and research...and research...and because my town is SOOOOO lacking help for the Visually Impaired, not many people know how to work with Low Vision patients.

It seems too many times that the "professionals" like to treat their "patients" all the same. THIS makes me VERY upset. See, when you can't see very well...things change. We see with our brain. The eyes are just a vehicle. So, when the eyes aren't "right" everything changes. My child cannot see well...take the time to THINK about what it would be like to not be able to see? When you go to the bathroom in the middle of the night, do you walk fast or slow? Do you run to the bathroom in the pitch black? OR do you walk slowly, hesitating with each step because you cannot see what is in front of you? Do you shuffle your feet in an effort not to trip on that toy you just know your child left on the floor? Or do you run? Be honest, you slide your hand along the wall, walk slow, run your hand up and down the wall until you find the light switch. What about Lilah?

What if you could never turn the light switch on?

Recently I stumbled upon a "message board" for parents of Visually Impaired children. The conversations were from 2006, but EVERY parent discussed when their "blind, VI, low vision, etc" child walked, talked, potty-trained, etc.

And you know what???

Lilah is right on track for being a Visually Impaired Person. Actually, she is babbling much quicker than some of the other patients I read about. Now, I am very aware that this can differ from patient to patient. BUT, my point is...

ENOUGH tests! I am so tired of watching my baby cry, and scream, and be poked and prodded because she is "different."

I am putting a HALT to it.

When we receive the results from the MRI, that will be the last of the tests for a while.(unless the neurologist finds something that needs to be treated)


I want my child to enjoy LIFE!

So, my new years resolution is to spend more time enjoying life with Lilah and less time letting the "professionals" tell me what to do. She is my kid. God gave her to me for a reason....and I think I am doing a pretty good job!

I love you Lilah Bird!

What Santa brought Lilah for Christmas...

After months of deliberation, Santa and his elves could not decide what to bring Lilah.

First they thought about random toys that would be fun to play with....

Next they thought about toys to help her eyes...

Then they thought about toys to help her walk....

But....

Nothing seemed right.

Santa FINALLY came up with the PERFECT toy....

Lilah really loves playing her GaGa's piano, so he decided she needed one of her very own
Doesn't she look like Mozart here? With her legs spread wide?

She had to have a little chocolate too

Daddy says she looks like Stevie Wonder playing here

And when she's all done, she backs off of her seat all by herself.

Santa did good!

Christmas Miracle. Lilah said "AGAIN!"

THIS is a MIRACLE and I am grateful!!!

Merry CHRISTmas

Love the Sharp Family!

Remembering...

I will never forget the thoughts, feelings, emotions, heartache, joy, and questions that came after Lilah was diagnosed at 18 hours old.

I remember hurting like I have NEVER hurt before.

I remember crying more tears and weeping with wails that I thought were meant for people who were grieving. What I didn't understand was...that I was. I was grieving the loss of a "dream" child. You know...we ALL do it. We all pray for 10 fingers, 1 heart, 1 brain, 2 kidneys, 2 arms, 2 legs, 10 toes... healthy child. RARELY, if ever, do we become pregnant and say, "OK Lord, here I am. I trust YOU with this being you allowed to be created inside of me. I trust that you will give me whatever child YOU have planned." I wish I had THAT faith two years ago....
See, I didn't. I didn't trust HIM fully. I still wanted MY way. I am human. I wanted the perfect fourth baby to heal the wounds that were scarred in my soul forever from my past. I wanted this baby to "fix" all that was wrong and still healing in my marriage. I wanted this baby to be a new beginning for our family. To help restore peace, calm, happiness...and so much more.

When Lilah was born and they handed her to me...I knew. I knew immediately. I knew that her eyes were different. I knew. But, the nurses said"No, she's fine." God gives us instinct. God gives us those moments when HE is present with us to feel and hear the Holy Spirit. I knew, my gut, my GOD, I knew. But, I didn't trust. I wanted to know what it was. Would it get better, go away, be filled with quick healing and something simple.

Nope. It wasn't easy. It wasn't quick. It wasn't free of pain. This journey with Lilah has been one of the MOST painful journeys ever. But...I am stronger now.

I look back at that time and see how God was answering ALL of my prayers. ALL of them. He wasn't answering them as I wanted them answered. He was answering me as they NEEDED to be answered.

My child. My heart. My sweet ANGEL...Lilah. She has changed us so much. My home is different. My family is different. My voice is different. The way I view people is different.

The Lord gave Lilah to me to change me from the inside out. I needed to be humbled. I needed to be changed. I needed to have my marriage and family restored.

What I didn't understand when I heard Lilah's diagnosis was that the Lord had a plan. He knew that by giving me this child. SHE would change me, my perceptions, my heart, my love, my passions, my compassion, my advocacy, my work ethic, my joy, my sorrows, my pain, my healing, my soul.

I wasn't trusting HIM. Go back and read this blog from the beginning. See the pain in my heart. See the weary soul who yearned for her daughter to be healed. Who asked God time and time and time again, "WHY? WHY? WHY? WHY HER?????" I was MAD. I was hurt. I was angry with God. I didn't understand. I thought ,"WHAT have I done for YOU, almighty, to allow her to be born like this?" I remember wailing MANY times, "Lord, PLEASE heal her. FIX this. Make her better. Make her not have to work so hard, be so different. God, PLEASE( I was pleading at this point on my knees) PLEASE take this from her. NOT her. Give it to me!!!!"

I didn't see, or feel, HIS hand...holding mine all along. I didn't see HIS face in Lilah. I didn't understand that while I was cradling her in my arms screaming out of pain and sorrow for my child, HE was there. He was already there....rescuing me.

HE sent her to heal me. He sent her to heal my marriage. He sent her to heal my family. HE sent her to heal the wounds and lies I had believed since I was 7 years old. He sent her to heal others. He sent her so MANY others could see HIS face. HE sent her so we could see and feel HIS presence.


Why o why am I SO human and could not have seen HIM in all of it all along???


Because I needed to go through the valley. I needed to feel the pain. Experience all of it in every fashion so that I could understand HIS love.

I always thought HIS love was for everyone else BUT me. I always thought I was too bad and had thought and done too much wrong that I didn't deserve HIS love.


Want to know the TRUTH? HE sent her to me because He DOES love me!!!! YES, HE does. He trusted Lilah to me because HE wanted me to feel HIS touch through her fingers and feel HIS arms in her hugs, see HIS face in her smile. I have been holding a slice of heaven all along and I missed so much by not trusting.


HE is with me on this journey. He is right here.

Today, I see HIS face. Today I trust HIM fully. Even when I don't get it. I am human and get sad, BUT...I trust HIM....and I love HIM.


I love HIM even more because HE chose me. He chose me to tell the truth and feel the pain and experience it ALL so I would share with you HIS love. He is real . His love is real. He has come to SAVE you. Will you trust HIM and let Him in?

I did...and I will NEVER be the same again!

Thank you, Lord, for Lilah Hope!!!!

Lilah has improved SO much!!

I have to be VERY honest...this morning I was feeling VERY sorry for myself. Today was the annual MOPS ornament exchange. I miss MOPS so much. I miss my ladies. I miss my friends. I miss the conversations. I miss the hugs, the love, the prayers, the support. On so many occasions I feel so lonely that I can just cry. I gave up MOPS at SCC this year for Lilah. I put her needs above mine. I traded my MOPS day for Lilah's full therapy day.

This life is NOT about me. It is NOT about my desires, my wants, my hopes, my dreams. I am the Lord's servant and Lilah was given to me. I have been entrusted with her and her care. I must do for her, for my other three, and Aaron before myself.

I am obeying God by placing my children and my family above me. They are my first ministry and my first priority after HIM.


My sacrificing has paid off TEN-FOLD! Here is what sacrificing has done:


THIS is what Lilah did today after she ROCKED it at therapy!!



I know I have made the right choice!

Lilah TALKING!

She has the voice of an angel.
(ignore the Mama voice who cannot sing very well)

Communication

I have been wondering...ok, let's get real here... I have been dying.... to hear my little angel speak. Dying to have her communicate with me on what she wants to eat, drink, more, again, does it hurt, are you happy, do you feel loved, do you know I love you more than I could ever explain in words or emotions...and much more.


Slowly this gift of mine is opening her mouth and letting sweet sounds out. The other day, clear as can be, "Ada" (sounding more like "ahhDahh") came out when I asked her if she wanted me to sing the song again.


Well, yesterday in the car I could hear her behind me trying to relieve herself in her diaper, then she began to whimper. "Lilah, are you ok baby?" I asked.

She got more frustrated.

I said, "Lilah, did you go poop?"

And she said it, "baba"

I said," We will be home in just a minute and I get that poopy off."

Lilah grabbed her diaper with both hands and said it again, "baba"


So...ignore the descriptiveness of this post and the "wrong" sound she made....and see this for the beauty that it is...


My girl went poop, hated the feeling of being in it, and communicated to me by pulling at it with her hands and her "baba" to get the nasty thing off of her.


I am praising God for this little moment of understanding. I am grateful that her brain is comprehending me. I am grateful that no matter the sound that comes out...there is something. I am grateful that my girl is smart enough to know that she wants that nasty poop off her bum.

See, when you are given the gift of a child like mine, you refuse to take anything...ANYTHING...for granted. Each and every sound, cry, laugh, tear, pain, and triumph is God showing you HIS existence in the face of your child.

Thank you, Lord, for choosing me...for her. I am humbled by this experience and pray that I will honor YOU and Lilah, and my family, with all that I do and say. Glory to God!!

Attacking this fear with TRUTH

Today as I type this post, I am reminding myself what I have committed to do from the very beginning...tell the truth. I refuse to type things I do not believe. I refuse to cover things up just to "make face", have someone else see how "strong" I am, or pretend that I can do this.

See, I cannot. No, I cannot. But, Christ can..and HE guides me on this journey every step I take.

Here is where the honesty gets real.... I believe that by being transparent, placing my entire heart and being on this blog, I am honoring God. I do not do fake. I cannot "fake it til I make it." it's not me. It's not who I am.

Right now...I am fearful. My husband is fearful. We are under attack from Satan. So, before you click away from my blog because you think"yep, she's one of those nuts" ....hear me out....

We are honoring the Lord by serving HIM during this Christmas season. When many people are buying gifts, working and making more money....we have placed HIM first. We have forgiven people who have pained us deeply, we have done for others, I have limited my sessions to place the needs of my family first which has allowed Aaron to serve as a Roman Soldier in the Journey at Savannah Christian. Well, Satan is MAD. An ex-atheist doing the Lord's work and his wife, trusting and loving God even when it's painful. Nope, Satan won't have it. So, he has begun his attack again.

Aaron is worried that we "did" this to Lilah. I am worried that the I did this to my girl. I am worried that I am not doing enough for her.

Do you know where worry comes from? Not from God. I have allowed Satan to creep back in and spread his lies again.

Uggggggg...

So, I am ready to do battle. I am armed with the truth.

Lilah is "fearfully and wonderfully made"
Lilah is HIS creation
Lilah is amazing

"Therefore I tell you, stop being perpetually uneasy(anxious and worried) about your life, what you shall eat or what you shall dink; or about your body, or what you shall put on. Is not life greater(in quality) than food, and the body(far above and more excellent) than clothing?...And who of you by worrying and being anxious can add one unit of measure(cubit) to his stature or to the span of his life?" Matthew 6:25,27

And more armor...

"My son, give attention to my words; Incline your ear to my sayings. Do not let them depart from your eyes; Keep them in the midst of your heart; Fir they are the life to those who find them, and health to all their flesh." Proverbs 4:20-22


And from the book and devotional I am reading in Battlefield of the mind by Joyce Meyer:
"God of all peace, help me to recognize and enjoy Your presence in my life and to be thankful for all Your blessings. Don't let me waste my life worrying about things that only YOU can control. In the name of Jesus, I ask YOU to free me from worry. Amen"

Genetics update...somewhat

After waiting two months on information from Lilah's genetics test results, I found out last week that the geneticist said they never received the results. So, I called my pediatrician again...

then, I took matters into my own hands. I called my friend, Dawn, who is an audiologist here in town and asked her if I could borrow her fax machine. She faxed the results of the micro chromosome array analysis to the geneticist....and I waited until the fax conformation came through

THEN...I called. "Did you get it?", I said.
The secretary said, "yes"
I said, "Could you please go place it on Caroline's desk? Thank you."

Now, you might be asking some BIG questions, like...

Why did we have to give the geneticist the results?
Why didn't they call us with information?
Did the geneticist not do the test?

Well, here are the political, not-so-nice, but really the honest-to-goodness truth:
The geneticist told us that if Lilah's blood was drawn at MCG that the hospital would take MONTHS just to allow her blood to be given to another hospital or school due to hospital political junk. So, he said our pediatrician would have to take the blood and send part to Wisconsin, for the Peters Plus Syndrome study, and send the other portion to have a micro chromosome array done. So basically the geneticist has done NOTHING but give me a bunch of numbers and the run-around.

If you think I am frustrated...it gets better....

So, Monday rolls around and I call the genetics counselor. Left a message..no call back. Then Tuesday I called, and Wednesday...
Finally, she calls today.
She tells me that on page two of the report it states that the specific gene on Lilah that has a deletion could be a familial variant, OR a new gene.
Here is what she said,
"You and your husband have these harmless genes(variant with unknown clinical significance) in your blood. This deletion could be one of those that was passed to Lilah. OR it could be a new gene with clinical significance that could show mutations. You need to get your blood and your husbands blood tested to see if it is harmless or something more...harmful."
So, I called my pediatrician, got an order for Aaron and I to have our blood drawn under this code that would show whether or not we have given her this gene that is "nothing" or if Lilah has a new mutated gene that could cause her issues forever.

I called Aaron, he had JUST started his lunch, and asked, "Could you please go to Cossio's office, get the order and go to the lab and get your blood drawn?" After some prodding about what his boss would say about lunchtimes, etc. He said he would.

I rushed and changed my clothes and Lilah's, went to get Eli from school, then hurried to the lab.

On my way Aaron called and said, " Got the order and my blood drawn. Cossio wasn't quite ready when I got there, but we chatted for a minute and he gave me the order."

I said, "Thank you. Did Sharon(Cossio's nurse) see you?"
Aaron said, "Yes, she and Cossio...and Sharon said you are too fast for her and Cossio said that this will come back as nothing."

So, as I had my blood drawn and told Eli not to look( he was so worried about his Mama) I kept thinking about what Aaron had said....

Nothing.

If all of this proves to be a genetic mis-fire and that they cannot explain it...and once again, God is in control...will the therapists and people who STARE at her ever stop asking what "IT" is? and can I finally just rest knowing that she is mine and who cares what this "thing" is that she has? or do I need to know the answers so bad so that I can help her, be the best Mama to her, and stop wondering? I feel like I am failing no matter what I do. When will the answers be"enough?" Am I doing all I can? Am I missing something?

So, our blood is at the lab...and once again we wait....and pray to trust in the ONLY thing we know for certain:

God gave us Lilah, and no matter what she is mine and I love her with my entire being!

and..........

I will NEVER stop fighting for her!

HAPPY

No matter what she faces....

No matter what she sees and cannot see...

No matter what the disability....

Lilah is

HAPPY!

Lilah's Tea Pot

Trying to get Lilah to communicate with us is often very frustrating to us, but more to her. I see the look in her eyes that she really wants to. I know she wants and needs to tell me something, but can't.

After months of Speech Therapy, and many, many , many repetitions from Mommy...something happened today.

I could barely control my emotions. My body didn't know whether to praise, laugh, cry, or cheer.

I have been singing "I'm a little Tea Pot" for Lilah about a million times a day. After the first four times, she would bend her body because she liked the "tip me over and pour me out" part.

At lunch today, I began to sing to Lilah. And when I was done I said my normal, "Again?" and then it happened...

"ADA" she said.

My heart leapt...
"I'm a little tea pot..." I began to sing again, voice half shaking, eyes filling with tears.

My girl understood me. She did. She spoke to me what she wanted.

I bet I sang I'm a little Tea Pot 50 times. Each times she would vocalize something, move her body at the end, and shake her arms for me to dance.

As I sit here and type this I am just in AWE of God. When I feel the saddest and the most lonely, HE shows me that HE is right here with us, holding our hands as we walk the paths of Holland together.

I remember being happy that my older three hit milestones, spoke, walked, etc...but this is different. If you only knew what it is like to watch your child try with ALL of their might to do something...cry big, fat, rain-drop sized tears, you would understand why I cannot control myself when she does something. I must shout it from the rooftops!

God showed me HIS face today...in the face of my little blonde beauty as she held her hands out and danced and said, "ADA" for me to sing it again.

Man, God is amazing!

"ADA!"

For her

On Lilah's 2nd birthday, 11/25/10 Thanksgiving, I ran my first 10K. I ran the 10K portion of the Ten Can run. We pay to race and give 10 cans of food for the Lighthouse Ministry for my Church, Savannah Christian Church.

Lilah inspires me to do things I would have NEVER done before.

Each step I ran, each time I felt tired and began to slow up...I thought of Lilah.

I pictured her face as she learned to crawl and would scream out of fear. I pictured her face as she learned to stand. I saw the image of her tears as she took her first steps with her walker...and I pushed. I knew that if she could fight that hard...so could I.

I ran my first 10K in 60:43. Sixty minutes and 43 seconds. Not too shabby for a first timer.

Me and my inspiration, Lilah, right after I crossed the finish line.

Thank you, Lilah, for pushing me to do better, be better, try new things, continue to fight, and NEVER give up. I love you SO, very much Lilah!

A little taste....

Here is my day, in a nutshell, every Tuesaday.

5:30am wake
5:30-6 devotional and quiet time
6:15-6:45(if a good day) run
6:45-7:30 kids wake, snuggle, breakfast
7:30-8:45 chores, make beds, make lunches, dress four kids, make sure Lilah hasn't taken her patch off and still has her AFOs on
8:45-9:15 drop older three off at their schools
9:20-9:45 drive to Backus on the other side of town
9:45-10 Lilah practices walking into therapy with her walker
10-11 PT with Laura
11-12 OT with Sarah
12-12:15 drive to, hopefully, meet Daddy for a quick lunch
12:15-12:45 lunch
12:45-1:10 drive back home
1:15-2:15 OT with Tara
2:15-2:30 drive to get Eli from school
2:35- 2:45 drive to girls school
2:45- 3:30 wait in carpool line, chat with Eli, hope Lilah catches a few minutes zzzzzzz
3:40 Alex and Sammie get in the car
3:45-3:55 drive home
4-5 homework, start dinner, etc
5-5:30 sneak in a quick run around play time with the older three while Lilah giggles
5:30 dinner
6:15 clean up from dinner, do dishes, try to play with kids
6:45 bath time for kids
7:15 Lilah's bedtime...my snuggle time to read and sing to her...love
7:15-8 read, sing, snuggle to older three
8-10 edit, return emails, etc
10-11 zone out and hope to fall asleep...

Now for those that ask how do I do it....God knows because He gives me the strength.

Honesty

Normally when I take pictures of Lilah, I only display the ones where her eyes are looking at the camera, or ones that show her improvement. Normally, I try to focus on what is improving, rather than what needs "fixing" or "repairing."

The clarity of Lilah's eyes is AMAZING. NO other explanation than God. None. Sorry all atheists and unbelievers...THIS clarity...yep, ALL God!

So, here is a picture I took today that I couldn't wait to share:

I have been trying for months to get THIS shot with Lilah. I have asked MANY of my fellow (much more knowledgeable) photographers about what they think would be the best way to get this shot for Lilah. Understand, Lilah takes more patience, more care, more time to photograph...I am thrilled to show you how GREAT her eyes look!

NOW...for the HONESTY

Many have asked WHY we patch. First we began to patch because Lilah's right eye had barely, if any, clarity, and Dr. Greenberg thought we were going to "lose" her right eye. (meaning, her brain would think it didn't function so it would cut it off from working) So, we patched so that her right eye could focus and work on getting light to it so we could "save" it. Now we patch to keep from having to do surgery on her right eye because it turns in so much. Well, Lilah's right eye is VERY weak. The muscles in her right eye are not strong enough to hold her eye in the proper alignment. I am going to show you what her right eye does when she is tired, its too bright, and/or...sometimes.

I am asking for those of you that follow this blog, that are close to me, that see me FIGHT with Lilah to keep her patch on....to HELP me...her patches will prevent surgery. PLEASE help me PATCH her. PLEASE help me to stop her from taking them off. 5 hours, each and everyday...we patch to TRY to save this eye....The MORE we patch the LESS chance of surgery and the MORE we can fight...

So, without further delay...

She's still beautiful, isn't she?

And YES, that left eye is near PERFECT!

***PLEASE pray. PLEASE for STRENGTH for her right eye. I believe, and KNOW, that prayers change things. Prayers are answered daily. Prayers help us keep our focus on HIM and remove ourselves from it. I believe that HE can and will heal her. LOOK at what HE has already done. Please pray, pass on the prayers. If patching can prevent surgery, or the need for multiple surgeries, than why not? Thank you, in advance, for the prayers...whether they are answered with a yes or a no. I know that the Lord will use Lilah for HIS greater good***

Lilah's Story is in a Magazine!

I am thrilled to announce that Lilah's story has been told in a magazine here locally.

You can read a digital copy online at

www.somethingspecialmagazine.com

She is in the December issue. Follow the instructions and get your tissues handy!

Thank you SO much, Katrina, for starting this magazine. Thank you, Avis, for writing it SO beautifully!

I am determined no other Mama will feel alone in this journey!

Happy 2nd Birthday Lilah!

Two years ago today my life changed...forever. I left Italy and landed in Holland.



Today I can tell you all the wonderful things about life in Holland...

Lilah is a JOY!
Lilah is loving.
Lilah gives the BEST hugs...ever. She wraps her little arms around your neck and squeezes so tight.
Lilah makes you smile.
Lilah LOVES to dance.
Lilah is peaceful, patient, determined.
Lilah studies you intently so that she will understand you more. Be honest, who in your life studies you, watches you, and notices every detail? Lilah does.

When you're visually impaired and life takes more time to understand, you tend to be more of a thinker and an observer than a talker and a doer. My Lilah is a thinker. She studies you with her eyes and her fingers and she takes time to make her assessment of you. Couldn't we ALL benefit from being more like Lilah?

We celebrated Lilah's 2nd Birthday with a few friends and family. Nothing big or over the top. Just those that have been there from the beginning. Lilah got passed around, loved on, snuggled, she played, crawled, and giggled.

We decided to give the "smash cake" another go, because she wasn't that aware and into it last year.

Look at that beautiful girl after we helped her blow out her candles!

Her sisters and brother really helped direct her and encourage her to eat it. They are ALAWAYS there for her. They LOVE her, play with her, encourage her, and support her.

Alex even decided to help her smash it!

Lilah wanted to share with us all. SUCH a sweetheart!

Lilah,

Every moment of everyday I thank God for you. What a blessing and a treasure you are! I may get sad sometimes at the way that people behave, act, and do things to or around you, but know without a shadow of a doubt that your Mama will fight to get you what you need. You, my sweet angel, have made me a better woman. You have given me courage to attempt my dream. You have given me assertiveness that I never had before. You have given me a drive that wants to change things for other Mommies and kids. Lilah, you came to earth to change us all. You came to teach us how to love and accept each other, You are here to make such difference. What you don't know is...you have saved me. Going through everything we have, I have learned and grown. I have seen the face of God in your eyes. I have seen the LOVE of Christ and feel it more in my heart than ever before, Lilah, you are an incredible woman. You are a treasure. You are a beautiful woman and you shine HIS light for all to see. Happy Birthday my miracle!
I love you so much Lilah Bird,
Mommy

To watch the video Aaron made for her birthday click HERE!

YES!

I have researched and researched since Lilah was born. I have followed blogs, asked questions, laid my heart out for the world to see, literally, kept digging, kept asking, kept believing.
Many of the articles I have read, and/or linked on this blog have been from Texas School for the Blind and Visually Impaired. I have read article after article from what they have written or produced. What an amazing source of information and knowledge they provide!


Since Lilah was born I have learned that I must fight for her and what I know she needs. I learned along the way that if I don't say what I know she MUST have to improve, no one will. I am her BIGGEST and BEST advocate. Sometimes being her advocate means making people mad or frustrated. But see, my intentions are never to hurt. My intentions are for my girl. I have learned that as long as I am pleasing God, Lilah is improving, and my husband and children are happy, then I am doing my job. Many will judge, but that's okay...


I have fought HARD to get Lilah O&M. HARD! Savannah Association for the Blind told me that I wasn't allowed to get O&M until Lilah was mobile, walking and getting around better. Well....TSBVI says VERY different. Read THIS article!
TSBVI says that O&M should be present as soon as possible to help the infant learn cues through tactile, sound, etc.


Lilah has been receiving O&M for about 3 months. I am going to stop right here and say a big fat WOOOHOOO that my fighting has paid off!!!


Lilah's O&M specialist, Yinka, is amazing! She spends the first 5-10 minutes loving on Lilah, allowing Lilah to feel her hair, earrings, snuggle, etc. Yinka gets MORE from Lilah than ANY therapist. She spends SO much time loving and respecting Lilah that Lilah gives back to her ten fold. I have heard her babble more, seen her get more mobile, etc just from Yinka allowing Lilah to do it a little more on her own terms. Yinka said, "I have learned to give the child choices, and if they don't want to do it, they will go back to it eventually."


Guess where Yinka did her Internship? Yep...you got it...TSBVI!

How cool is God for orchestrating THAT?

So, I just finished Lilah's IFSP meeting(s). Yes, we chat a LOT so we extend it to 2. LOVE that!


Having to make changes that benefit Lilah, and my family, may not be the easiest thing, but I am here to serve God and be the best wife and Mother I can.

Lilah learning "I'm a little tea pot!"

Please ignore my singing, but wanted you to see how Lilah's is trying to do "the moves" of the song.

Happy 2nd Birthday Lilah

Aaron surprised me, at Lilah's party, and made a video from all the photographs I have taken of Lilah over the last Two Years.

Lilah will be 2 on Thanksgiving. What a HUGE amount we have to be thankful for!

My family

I could not begin to thank God enough for the blessings in my life.

An amazing husband who LOVES me and my children unconditionally. I LOVE you, Aaron. Thank God for you. Thank God for our marriage, our children, and eternity together.
The JOY and wonder of being a MOTHER...

The Greatest gift!

My beautiful mini-me that has the biggest servant heart.

She will make you giggle!

The drama queen who can turn it on and off in an instant. This little one has a heart of gold and keeps me on my toes!

My handsome man. He is his father in every way...playful, funny, mischievous, has a HUGE heart...but thank God he got his Mama's rhythm!

The miracle!

What she has done for this family...what she has done for so many...what she will continue to do in this life

I will NEVER take them for granted.

Thank you, Lord, for my family!

WHY her? why HER?

I remember the grief I was faced with when Lilah was diagnosed. I will NEVER forget that moment...I didn't understand. I remember praying and asking, and begging, and getting SO mad at God..."WHY HER?"

The first five months of her life I was SO alone. I didn't know where to turn, who to ask for advice, what to do. I was OVERWHELMED. No one could make me feel better. NO ONE could take the hurt, pain, anger, questions, sadness, etc. away. My questions, comments, thoughts and prayers went on and on and always back to that SAME question..."WHY her?"

MONTHS later, hundreds of thousands of tears later, time, prayers, GROWTH...and NOW... I see a TOTALLY different perspective.

Last month I went on a spiritual retreat. My first EVER. The absolute BEST thing I have ever done.

You see...I thought so many messed up things about Lilah's birth. I didn't understand..no, NOT FULLY, the depth of God's love for me....for ALL of us.

See, I blamed myself for Lilah's diagnosis. I blamed myself as if I caused or created or "did" this to her. "Did I eat the wrong thing, drink the wrong drink, should have done this or that differently, etc" See, THAT was wrong thinking. I had believed these lies forever. That everything was MY fault. I believed the LIES that others told me. People who were(suppose to be)closest to me. People I was suppose to trust.

When I went on the walk to Emmaus I was faced with some of my toughest fears. People from my past were there. People from my present, and people who confirmed what I already knew in my heart, but had been lied to for 18 years. I had to face those fears to see the FACE of GOD.

I had to lay ALL of my burdens at the cross. Give it ALL to the Lord and know that HE died on the cross to set me free.

I am FREE!

I learned on my Walk to Emmaus that it doesn't matter what ANYONE thinks of me. It doesn't matter what anyone thinks of Lilah. What matters is what God thinks of us!

Lilah was given to me. Lilah was trusted to me. Lilah was placed in my care for me to help change things for her, and for others. I have been VERY determined to change the way that special needs children in my area, and all over this country, are being helped.

I have been fighting SO hard to get Lilah the services she needs and deserves. I use to be afraid to ask for things. Until I realized...if I don't FIGHT for Lilah, WHO WILL? So, I have become VERY assertive. I have become very LOUD for Lilah. I am sure that some people don't like me. You know what? WHO CARES!!

This squeaky wheel has gotten a LOT of grease for Lilah...and for my older three!

I know that what I am doing is pleasing the Lord. He has given me this blessing of Lilah and I am honoring HIM with ALL that I do for her...for ALL of my kids.

****a little back story****

September 4th was our Anniversary. 18 years together, 11 years married. Yes, we are high school sweethearts!

This September 4th, Aaron got down on one knee and re-proposed to me, complete with a new ring he had been saving TWO years for. He asked me to renew our vows and he did this in front of our children. He wanted our kids to see that he is a changed man and is committed to me and our family. (picture of the ring will have to wait....and here is why....)

Today as I was getting my ring sized I looked over at the other couple in the store. There stood a man with his arm around a confident woman explaining to the salesperson what she wanted...holding a white cane.

I was overcome with emotions. I stared at them. NOT a bad stare. An in AWE stare.

I saw Lilah. I saw her in that woman. I saw my baby in the future, being LOVED, being cared for, getting a ring, saying what she wanted, and NOT caring what anyone thought of her.

I noticed the couple leaving and stopped them. I could barely control myself as I told her that she exuded confidence and I was in awe of her....for my daughter.

The woman was very polite and told me that she doesn't always use the cane the right way, but she tries.

And THAT folks...is JUST it.....we try. We all try. We all fight.

And we should NEVER give up. EVER.

Don't take NO for an answer. HOLD fast to your faith. Stay strong in the Lord.

Don't let people's opinions of you stop you from doing what glorifies the Lord.

"Why Lilah?"

I will tell you WHY....

She will change the world. She will make people see the FACE of God. She will bring more to HIS glory. SHE will LEAD others to know their true calling.....she has with me.

I cannot begin to thank God enough for her. Lilah has given me the confidence to do SO much. She has taught me that I can fight. I can keep pushing and I can do it.

THANK GOD for LILAH!

Lilah WALKING from one side of the house to the other. GO GIRL!

GOOOOOOO LILAH GOOOOOO!

Lilah "talking" in the morning!

Halloween 2010...and a something HUGE!

We had a BUSY, but GREAT Halloween week.

Patchville at SCC is our favorite. Every year our church has a massive outreach for children of all ages. I am talking bounce houses galore, candy, hay rides, face painting, candy, rides, games, candy, oh and did I mention CANDY.

Eli had his fall festival at his school, Sammie had a party, and Alex had a fall festival too.

We are worn out...and a little full of candy!

Here are a few pictures to share. I know I am biased, but don't I have beautiful children?

As I got the kids together to take this before we headed to meet Aaron at Patchville, the stray cat came running over and got in. Eli as the Dark Knight, Sammie as Spidergirl, Alex as Spiderwoman, and Lilah as Minnie. Now, for those of you who are wondering why Lilah isn't a super hero...let me stop you really quick. Minnie IS our hero. When we went to Disney, Minnie's assistant held the line and Minnie led Lilah's hand all over her ears, face, nose, and more. (YES I CRIED) From that moment on, Minnie and Lilah had a connection...and Aaron and I fell in LOVE with Disney...so Lilah IS a superhero, too!
As you can see from this picture, Lilah LOVES her Daddy. She giggles and squirms when he gets her with his "whiskies." I am SO blessed to have SUCH a wonderful husband who loves me and our children unconditionally!

" Who me? No, I didn't eat the last one?"

She looks like she got caught RED HANDED!

My beautiful mini-me, Alex. She will be 8 next month. I love her SO much. She has the biggest servant heart I have ever seen.

Now, here is my boy. I love this little handsome devil who looks, and acts, just like his Daddy. I have had people ask me if I actually gave birth to him because he looks so much like Aaron. Yes, all 9lbs 5 oz I pushed out. Trust me, he is part of me too!

My little Sammie.... Such a sweet girl, but careful...she has a naughty streak. I love that no matter what happens, she LOVES to have her picture taken. She can be crying and so upset over a toy,then see my camera, and pose like a model. I know, I know...this one will give us some trouble. I LOVE this little one...in all her dramatic glory!

Look at this beautiful, messy, gorgeous, miracle. She was crawling and pulling up all over the sanctuary at church while "Dan, the Animal Man" was on stage.

I looked at this photograph over and over. I saw something that struck me like a jolt of LIGHTNING....look closely...

HERE...

look at it closer.....

These are some VERY clear corneas.

No, they aren't "perfect" but who cares about all of THAT...look...

You cannot look at this last photo and tell me God doesn't exist.

No surgeries, not even one, on her eyes. She went from completely blind with opaque corneas to these amazingly BLUE eyes in less than two years.

God is here. God is with us. God is healing Lilah. God is changing us...all of us.

You know, when I found out I was pregnant with Lilah...I prayed and prayed for this child. I didn't get the child I prayed for....no, I got something a million times better.... I received the child I was meant to have. The Lord knew exactly what He was doing when He placed Lilah in my care. I am so grateful for unanswered prayers. I am SO grateful that the Lord saw in me a person who needed, deserved, and would LOVE this special child.

Lilah is my gift.

Thank you, Lord, for this most awesome honor. I pray I honor YOU with all that I do with her, my older three, with my husband, my family, and all that I meet.

HE is using Lilah....I have no doubt!

Babbling Lilah!

Listen to how great this is!

Her Speech Therapist, Bethany, will be very excited...but disappointed. Lilah saves her babbles for us only. She listens and observes when she's at therapy of any kind. We get to see all of the work for ourselves.

LOVE this little stinker!

In the midst of waiting..

We got the results from the Genetic Testing and Lilah has a "deletion" on one of her chromosomes. We do not know, yet, what this means. As we wait the "diagnosis", Lilah continues to improve.

Many of you have been SO supportive and I thank you from the bottom of my heart. Yet, there are others out there who LOVE to make comments about me as a person, my skills as a Mother, what I should have or could have done, etc. Please do me a favor and don't judge me or my family. We know who we are in God's eyes, and THAT is all we need to know. We love you, even in the midst of your criticism. Enough of that...

Watch this video below and see how GREAT she is doing. I love you Lilah! Thank you God for her. She is a gift!

Speech is working!

In training...

Last May I ran my first ever 5K. I will NEVER forget it!

I ran the Susan G. Komen in memory of Serenity Dixon. Serenity fought SO beautifully and gracefully. She had SUCH poise, love, and JOY...even to the end.

After finishing this race, in just under 39 minutes, I did a HUGE self-inventory...at least on my athletic ability. I came to this conclusion:

If I can push and coach Lilah to learn to walk... I can push myself to run something longer and bigger. In June my friend, Melissa, asked me(before she moved away) if I would like to run the Disney Princess Half Marathon with her, at Epcot, in February. I said, " I JUST ran my first 5K, there is NO way I can do 13.1 miles." She said, "Start training now."

I did a GUT check.

Katie, you CAN do this.

I said to myself, "Everyday you ask Lilah to work hard, push herself, and do things that many said she would never do, or do next year...so, why can't you do this?"

Those words...were NOT my words.

Those words were the encouraging words from Jesus. Yep. HE said, "YOU can."

So, I paid the money(because I knew if I put the money down...I would NOT turn back) and began slowly running more and more and more.

I now can run a 5K in 30.25 minutes. WOOHOO. That is over 8 minutes FASTER than in May.

You see, running is not just my way to get in better shape and take care of myself. Running is my time, first thing in the morning. I'm talking...I wake up at 5:30 AM and get out the door by 6 to run before my family wakes up. It is my time to pray. It is my way to tell God every fear, hurt, pain, and ask HIM to take it away. It is my time to give it up to HIM. It is my time to ask HIM for forgiveness and ask HIM to give me strength to do what I do each day. It is my time to PRAISE HIM for the MIRACLE he has done in Lilah's life. In Aaron's salvation.

With each step I take, with each mile I run, with each passing minute... I think of LILAH.

I see this face in my mind and I keep going. I see how hard she works. I remember the tears. I mean the BIG, FAT, rain drop-size tears, that she has shed during PT, OT, and practice at home and I think....

If she can...so can I.

Thank you God for placing Lilah in my care.

Not only is she changing others...she's changing me.

Man, God is SOOOO good. HE knows just when to intervene and bring you to your knees to make a change for the better in your life.

I love my God, and I love my Lilah!

(oh, and I inspired my friend Mandy B. to run it with me too. Isn't God awesome?!!)

Fast walking Lilah!

The strongest woman I know: Lilah

I don't get it...

The place that will be doing the "study" on Lilah's blood is only looking for one thing. Wait a minute here...I don't want them to look for JUST one thing. I want them to test for ...everything. I feel like I am talking and talking and no one is listening. I thought that Aaron and I made ourselves PERFECTLY clear when we said, "we want to know...whatever it is. Please test for everything."

When Lilah was 9 weeks old I begged for a blood test for Lilah to see if there was anything else other than her eyes. Cossio didn't see any reason to test for it, but he did it for my peace of mind. Little did I know that those 9ccs only tested for broad spectrum karyotype. Her karyotype came back..."normal." Normal is something that needs to be removed from the medical dictionaries all together. Really! What is normal anyway? Perfect legs, perfect head, perfect arms, perfect eyes? perfect? Our society has pushed into us all that we must "be" a certain way or "do" a certain thing in order to "fit in." A friend of mine once said, "in Jesus' eyes we are all the "in crowd."


I found out Friday that Lilah will have to have her blood drawn multiple times and sent to multiple places. Are you kidding me? There isn't one place that can test...for everything? So we must send her blood to Wisconsin for one test and then draw more and send it to more places. I hate this for her. I hate that I have tried everything I can and I still feel like its not enough.

Why haven't more Doctors suggested that she have these tests done? Out of all the docs we see...where is the continuity of care?

Have you ever watched that show on the discovery channel where they know there is an issue, but they don't have a "name" for it? So they keep looking and searching and coming to road block after road block and the Mother says, "I just want to know what it is so I can help her".......THAT is me.

I remember the nurse handing Lilah to me and I instantly knew that there was something wrong with her eyes. They kept telling me "no, she's fine"....18 hrs later I learned the truth. I feel like I can't rest until I know it all. What is "it?" How will this affect the rest of her life? Will it just be a "name" and we will finally know....someday...and can take a breath?

Today after Lilah's multiple therapies...blood will be drawn.


Why can't there be one place that tests for it all? Why do we have to put her through it so many times? Is there a way that our "system" could be better and more efficient? Sure seems like there should be a better way....

Hmmm...

My kids have a "thing" about being naked.

What is it about clothes that children hate?

Whatever it is...Lilah is pretty "normal" in really liking to be naked.

Something about this is SO cute to me.

Maybe this Mama just LOVES her baby...all of her!

Watch her WALK!

Prayer

Our family believes that prayer is a very powerful thing.

We know that prayers have been answered and the Lord has cleared Lilah's eyes without surgery.

We know that all prayers are answered...but the answers might not be the one we want.

We know that this is where trust, faith, and obedience must come.

We are praying for Lilah to have "normal" results from the geneticist and from the MRI of her brain and spine.



But, we must also understand that HE holds a purpose greater than we could ever imagine.

My friend, Dana, came to me at church last week and said, "I heard this song and all I could do is think of you."


PLEASE click and listen to this song:
Johnny Diaz "Waiting Room"


Dana was right. It is perfect for us.


We are asking for everything in our hearts for Lilah...but we must also trust HIM and know that we may receive a NO....

and we must find peace knowing that there will be a reason why.


I listen to this song and cry because I know that the lyrics are so true.

No matter what....HE holds a bigger perspective.


When I was pregnant with Lilah I prayed for my baby to be "healthy, 2 arms, 2 legs, 1 heart, 2 kidneys, 1 liver, 1 brain" and HE answered, "YES"


I didn't get "perfection" by this world's standards...I got MUCH better...perfection through HIS eyes!

I love Lilah. Thank God for her...all of her!

Staying focused

After we went to the geneticist, my mind began to RACE with questions, thoughts, emotions, etc.

Aaron and I are just overwhelmed with "what if" right now.

IF she does, in fact, have Peters Plus Syndrome

IF she has a genetic problem

IF there is something else

IF I have missed something in all the BEGGING for tests

IF I have failed Lilah in some way

IF I can do MORE to help her

Will a "diagnosis" ever change our LOVE for Lilah? NO. NEVER.

I want to know what, if, how, when, how much, what to do, when to do, etc. so Lilah will get what she needs. I NEED to know how to help her.

After all the emotions I began to realize that I am NOT trusting with my whole heart.

I want and NEED to know "what and if" so I can steer Lilah on the right path...

But.. I also NEED to stay focused on what is REALLY important.

THAT...

is

continuing to LOVE Lilah for who she is...

and

Do the best I can.

I look at Lilah and see LOVE, peace, strength, beauty, and I see God.

Little glimpses of heaven rolled into my beautiful baby girl.

We went to the park the other day and I watched Lilah as she was swinging...

She is happy.

She is LOVED.

She is beautiful.

She is patient.

She is AMAZING.

We are SO blessed.

Thank you God for Lilah!

Fear of the many unknowns

I want, first and foremost, to say that this blog is where I can express myself...tell it all, leave nothing hidden and be very transparent.

I feel led to tell it all, leave no room for questions, open my heart, and let you in.


Last week Lilah went back for her neurologist for a follow up. Dr. Moretz was concerned that Lilah was still not walking and only babbling some.

First Lilah will be having another MRI soon. Lilah's first MRI showed that there was an issue with her white matter and a "small corpus callosum." But, Moretz and another neurologist said that they didn't see anything wrong with her brain and they thought it was a radiologist mistake. Now, because of Lilah's delays she wants to repeat the MRI and see if the issues have increased, gone away, changed, etc. She is pleased that Lilah is improving, but doesn't understand why she is SO "globally delayed."

Next, Lilah will be seeing a geneticist in Augusta, Friday Sept. 3rd. Dr. Moretz said it would be a good idea to see if there is a rare genetic problem that is causing the delays.

A few days later Lilah had a function vision assessment. The teacher was very pleased with Lilah and said she is "so impressed with her functional vision." But she also said that she doesn't believe that Lilah's VI is the cause of her motor delays. She said, "I think there is another issue that is causing that."

I told Lilah's PT, on Tuesday, everything that has occurred and she said, "I believe that the geneticist will find something." My heart sank. WHAT? She said, "there has GOT to be a reason that Lilah does this?"( as she points to Lilah when Lilah lays her head down) Tears began to well in my eyes. I thought wait, she's improving, learning to cruise, getting stronger then I got really frustrated n my mind. I said, "you think something is wrong with her? Why hasn't anyone said anything before? We had a blood test that proved she was a normal karyotype. Why now?" I thought to myself..."she's worked with her for 15 months, we've done all these tests and NOW...just NOW she tells me that she thinks there is an issue with my baby?" To make matters worse, Lilah's OT walked up, saw me crying and Laura filled her in. Then Sarah said she agreed. She thought that there must be an additional problem. I just really don't understand why she didn't tell me before. I don't understand why no one in the medical community hasn't mentioned anything to me until now. I have been fighting, pushing, begging for tests...to see if there was anything Lilah needed...or if there were any underlying issues. I am just heartbroken...NOT because of Lilah...because I don't understand why no one will talk to me. I don't understand why it has taken them 21 months to tell me that they think Lilah has a "problem" other than her eyes. Now I feel like I have been lied to. I feel like no one is telling me the truth. Is there something, other than Lilah's eyes, that she has? I NEED to know. I need for someone to fill me in. I need to not feel like the therapists and Doctors know something I don't. THIS is MY baby. TELL ME....please, please, please....tell me if there is anything going on with her. I need to be able to help her. I need to be able to have a plan of attack and guide Lilah on her path. I need the knowledge and information. I need to know EVERYTHING there is to know about Lilah! I am her Mother. If there is an issue, diagnosis, anything....TELL ME!!

Why hasn't my pediatrician said anything?


I just don't know what to think.

What if there is another issue? Will it change who Lilah is? NEVER. Will I love her less? NO WAY!

Nothing could EVER alter my love for her.

I am just having SO many mixed emotions. Why now? what do we do? how will this play out?

If she has a genetic problem will she be able to have children? will it be one more limiting factor for her? is it one more thing for people to "make fun of her?" I just don't know. ONLY God does.



I am so weak right now. I am trying so hard to trust God in HIS plans for her. IS there a possibility that she could have no genetic problems? Could her brain be normal? Could she be ok?


I know, there is probably someone reading this who will want to say something like, "it could be worse" or " calm down , Katie, its just a diagnosis" or "stop complaining" or any other choice phrase. And you know what? I know those things. I understand them...very well. I also know that I want the BEST for my child. I know we all do. We all want our kids to succeed, live happy, problem-free, no pain, fear, issues. We all look at our kids and think, "how can I help them? and What more can I do?" Lilah is MY child and I will do all I can for her.


The bible says we can ask. We can ask for what's on our hearts. We can lay it all at the feet of Jesus. So I am... I am asking for normal MRI and normal genetics. I am also asking for strength and endurance. I am asking for TRUST. I am asking the Lord to help me trust Him in all His plans for Lilah.


I know that the Lord has the best plans for her. I know that Lilah is perfect the way she is. I pray for peace and trust.

I thank the Lord for Lilah. I thank the Lord for entrusting me with this precious gift. I pray that everything I do honors Him.

Thank you for not responding with harsh words of criticism. To be honest, I just can't handle meanness and judgement right now. I need support, understanding, and encouragement. I am human. I am having a moment of weakness.

Such a little woman

Talking and eating

I love her SO much!

In Atlanta

at Dr. Greenberg's visit, we learned new things about Lilah.

He dilated her eyes and saw more red reflex in her right eye than ever before. He asked me if she was still on Lotemax and I said, "you told me to wean her off" and he said, "um, yeah, slowly" with that look like I misunderstood him. I said, "I haven't given her a drop in over a month" He said, "well, they are clearer!" He told me to increase her patching to 5 hours a day. He assured Aaron, who HATES to hear Lilah fuss with patch on, that no matter how long we patch her left eye, her brain will always go back to it as the dominant eye.


We asked him if she would be able to be in a normal classroom setting and he said, "Most definitely. The kids I see who need braille are completely blind with maybe light perception and she is not that." He said that most kids who have visual impairments, like Lilah, don't even need large print like elderly adults. He said she would probably just bring the paper very close to her eyes to read it more clearly. He said she would "DEFINITELY" be reading print.

NOW...for the BEST part...........................

We asked him what he thought her acuity might be and he said, "I wouldn't be surprised at all if she was 20/80."

I said, "But, we were told that she may only be 20/100 to 20/200"

He said, "It could be that, BUT...I wouldn't even be surprised if she even measured 20/60."

I said, "without glasses?"

And He said, "We aren't talking glasses yet."

TEARS filled my eyes.

At what point do I drop to my knees and thank GOD for ALL he has done in my baby girl's life? Daily? yes. Hourly? yes? each minute? yes. EVERY second of my life? YES!!!


How do you explain a child going from TOTAL blindness to 20/80 in under 21 months? ...

GOD

I am typing this as fast as I can before I walk out the door to serve and worship at SCC. I have MUCH to be grateful for, much that humbles me...and I want to say...

THANK YOU!!!

I cannot say thank you enough to ALL who have prayed, ceaselessly...and will continue to pray for complete healing of Lilah's eyes. I cannot begin to thank those who have stood by me...through it ALL...who listen who let me cry..who hug me...who love me..and LILAH...without question.

I will be the one with my arms HIGH in the air at SCC tonight praising HIM most high...if you see me with tears in my eyes, hear me off key singing know that I really don't care... I am praising the LORD MOST HIGH...because HE is SO good!!!!!

Can I get a WOOP WOOP?!!!

O&M= AMAZING! LOVE Yinka!!! Can't wait to learn more and help Lilah grow!


Functional vision assessment went GREAT! Libby was VERY impressed with Lilah and said many times how good she thought her functional vision is.

In 3 days, from 3 different professionals I have been told that Lilah WILL be in a NORMAL classroom.


After the functional vision assessment Libby said that Lilah's "functional vision is GREAT... She WILL read PRINT....I am SO proud of her!"

PLEASE:

Stop what you are doing RIGHT NOW....get on your knees...thank HIM for ALL HE has done for Lilah and know that we are BEYOND grateful for the MANY continued prayers.

The LORD IS GOOD...ALL THE TIME!!

quick update..

This will not be the prettiest looking post, nor will it be the most descriptive. But, here goes with as much as I can fill in, in the next few minutes.

Much has happened. Many things are taking place. My fighting for Lilah is paying off!!

This morning she will FINALLY be meeting an O&M specialist. wooohooo!!! Then this afternoon she will be getting a functional vision assessment with from a VT from a different county(politics of the counties makes me SO frustrated!) with my Ga PINES rep who has pushed and fought and helped me so much. I cannot wait to see what they say about Lilah!

Lilah is now getting PT(physical therapy) 1/wk, OT (occupational therapy) 1/wk with Backus and 2/month with BCW(babies can't wait), O&M 2/month and Ga PINES 2/month.

Here is an example of her Tuesday this week:

• Speech 9-9:30 here at the house
• 9:30-10 drive to Backus across town
• PT 10-11 Backus
• OT 11-12 Backus
• Grab a quick lunch and drive back home. Lilah passes out in the car.
• OT 1:30-2:30 here at the house BCW

(in about 2 weeks I will add school drop offs, pickups to this)

We just got back from ATL 2 nights ago at 12:45am. I will post the details of that visit after today.

oh, and my baby girl is sick...again...

My thoughts...EXACTLY!

Click HERE!

I'm SO excited!

I just signed the papers....

Lilah will finally be getting O&M!

I can hardly contain myself!

Place in Space

****HONESTY ALERT****

Most people with "normal" vision don't understand why it takes Lilah SO long to learn a new skill.

I have heard enough people say, "I thought is was just her eyes" so many times that I can feel myself cringe. I have learned to take that feeling and channel it into a teachable moment.

So, this morning as I got Lilah dressed and ready to go for a full day of OT, PT, OT, and finally adding O&M through BCW...

I decided I would video about 2 minutes of how I help Lilah practice to stand, turn, pull her feet in and more.

Some of you may think I am being "tough" on her in this video...come spend 2 hours at PT and OT and then another hour later on in the afternoon of OT and see how hard we push her, work her, encourage her, etc. and then question me.

Lilah has a TON of fear. She doesn't know where she is in space. She doesn't "see" things like you and I do. She understands this world much differently.

Here is a small video of what we try to do at home to help.

(push pause on the music on the sidebar to hear)

Watching her cry like this....I must remain composed and her coach, but inside I want to scream out of sadness for her. Some days I want to take the disability away from her so she doesn't have to be afraid, so she can see and move and grow without such work, so people won't make fun of her eyes. Some days I think, "she'll get there on her own time" somedays I wonder, "will she?" and then some days I ask God, "why her?"

But...I don't stay in those places long. I am BEYOND grateful for Lilah. JUST as she is. I LOVE her...with every ounce of my being.

God gave me Lilah for a reason. Am I perfect with her? No way. Do I have a LOT to learn? OH YES! I strive each and everyday to help her, mold her, shape her, encourage her, and be an example to her.

My goal is...

that no one will ever feel lonely like we did.

When Lilah was diagnosed, at 18 hours old, Dr. "D" told us that "God didn't make these eyes right" and "You are at the beginning of a very long road." He did not hand us any resources, tell us of any services, nor did the hospital or our pediatrician. The phone calls stopped. We sat, weeping, alone in the hospital with just one nurse that came to check in on us. No social worker...nobody. I thought this was what happened. You find out your child is "different" no one knows what to do...so they ignore you.

For 5 LONG months we mourned, grieved, cried, prayed, wept, felt alone and lost without anything but our faith in the Lord. Friends and family tried to offer some emotion support, but no one led is in the right direction with therapies, services, medicaid, disability, etc. No one told us simple words that would have gone a LONG way...they could have said, "Yes, she's different. Yes, she will be delayed. Yes, she will struggle...BUT...she will be ok and you are NOT alone."

Once the initial shock, awe, and "what do we do now" set in I remembered Babies Can't Wait.(BCW) My friend worked for them and I knew it was a service for disabled children. But that was about it. I had NO idea, was never told, suggested, or given any idea that Lilah would be delayed due to her Visual Impairment.

I don't want anyone to feel pity for Lilah, for us, etc. What I want is to make change. What I want is tell my story and make sure that NO other parent or family feels as LONELY as we did.

I believe that someone...anyone could have...should have....given us a better direction in the beginning. We cannot go back...but we can ALWAYS move forward.

I am committed to re-tell my story over and over until change, in this city, is made.

As the Lord would have it...HE has supplied me a way. Through Facebook....and a chance meeting at Backus Memorial for therapy....I met with Katrina Laygo of Something Special Magazine , here in Savannah, Ga, and have shared a portion of our story with her. She is on a mission, with me, to make sure that no other Mom feels like we are ALONE!

I am determined to help other parents know that no matter the circumstances, no matter the diagnosis... Someone IS there and will be there to help you on this path.

The Lord gives us our children, the RIGHT children, for a reason....Thank you God for my reasons!

Blessed

This afternoon I decided to get an updated photograph of my children.

this is what happened....

Thank you God for trusting me with these MOST precious gifts!

Aaron has already informed me that we need this LARGE on our wall...sounds good to me!