Lilah's Hope

I. LOVE. Redeye!

2012-02-12T10:09:00.003-05:00

Never, ever would I have imaged Lilah to request that I put her patch on every morning. NEVER would I have dreamed that she would not FIGHT me tooth and nail. But, each and every morning she points to the patch box and reminds me to put one on to start the 5-hour daily patching process. I believe that the consistency of the patching and my "never give up" mentality for Lilah's vision are two key factors in this. BUT, pray, petition, and God's healing touch are what have done this work.

I have BEGGED for prayer for Lilah since the day she was born. Begged. I have pleaded with God to heal her eyes. Begged Him to clear her eyes and give her sight without surgery. Pleaded that HE would take this "cup" from her and give it to me. I have asked God time and time and time, again, to heal her eyes. All the while He was slowly working in me. He has used this "waiting room" as a time to clear MY eyes and help me to see.

Never giving up HOPE...I have constantly prayed. Even when Devarro told us that there was no hope. I prayed. Even when we were told "at best one eye", I still prayed. At first it was asking, begging, pleading, then it changed to pure belief that He would really heal her eyes. I mean, I believe it. I have a peace now that I cannot even come to describe fully. God IS healing Lilah's eyes. Daily. Minute by minute. I don't just believe this. I know it.

Remember what I just wrote, "at best one eye" was the best case scenario. Just one was all we were ever to HOPE for..."at best."

BUT

Guess what God has done....

did you see it? No? You don't see what I see? well, look closer

that little RED spot in her right, bad, worse-of-the two, never have vision from, "it will just be cosmetically there"eye has grown from the size of pin-head to now an OBVIOUS red eye.

Yes, this picture isn't the greatest. I took it with my phone this morning. BUT, I don't care about that. I don't care that no matter how much I crop it is blurry and the picture stinks. I don't even care that, as a photographer, we are to dread "red-eye." As her Mama, as her advocate, prayer warrior, pusher, and HOPEful Mama...

I. LOVE. RED EYE!

This RED is proof positive that my prayers are being heard. This RED is proof that Jesus CAN and will do all things IF we believe in HIM. If we trust Him, obey HIM, believe HIM, and come to HIM with our greatest desire with a "pure heart." He will, He can, and He does.

The patch covers her "good" eye. Her almost clear, never had a corneal transplant eye. The right eye has never had a transplant. Her right eye wasn't suppose to have any vision. Her right eye....has RED reflex now.

Do you understand the power behind those words?

My child was born BLIND. White corneas. NO red reflexes. Promised ONLY transplants, glaucoma, and blindness by a mean doctor.

GOD said NO!

God said, "Don't believe what this world says about her. Believe me."

I do. I have. I am.

Lilah has 2 RED reflexes, 0 corneal transplants...

1 BIG miracle!

"Good Girl" Lilah

2012-02-11T21:15:00.000-05:00

Lilah LOVES church.

She adores everything about it.

So much so that THIS is how she acts when we get in the car...

You smiled, didn't you?!

God is using this little angel EACH day to spread HIS goodness and shine HIS truth.

Do you hear it?

Did you see it?

Do you feel it?

Just a few words from a sweet little girl can change your mood, your outlook, your perspective.

Just a few words, giggles, and smiles can brighten your day and help you SEE Jesus' face.

Are you blessed because Lilah is in your life?

I. SURE. AM!

Our trip to Atlanta...

2012-02-09T15:55:00.003-05:00

Started off at about 8:30 AM. We all got into the car and made our way to Meridian Mark Road. A few hours later we arrived in Atlanta.

Dr. Greenberg was very impressed with how well Lilah's eyes look. He just raved about how "straight" they look. He was so pleased with how she followed the sounds he was making and the toys he placed out. She followed the lights well and he said, "I would like to get her pressures, but since we just got them in October before the surgery, I don't want to make her mad because she is tolerating all of this so well." If you recall, Lilah's pressures were NORMAL during the EUA in October. Greenberg was happy that Lilah is doing better physically.

He said, "I think we will attempt to get her pressures and more readings at the next visit in June and then we can space the visits out more...closer to a year between visits." What a blessing THAT would be on us as a family!

With Lilah's two eye conditions, increased pressures and glaucoma are her biggest risks and we must be VERY cautious of that. Yes, I pray against glaucoma...DAILY!

All six of us made our way back to the car for the 4.5 hour drive home. It was a LONG day but we were SO glad to have the good news.

Today was Lilah's BIG therapy day. On Thursdays Lilah has OT, PT, and ST from 9-12 at Backus. Lilah did AWESOME for EACH therapist. I am just SO proud of her.

This is her today after therapy...she just HAD to stop at the purple flowers outside of the mall for a feel and a look.

And THIS is what she did this morning BEFORE therapy...

Isn't God incredible?!

So, I have put a few calls in and am waiting to hear back to see if I can get Lilah into a few days a week of a pre-k program. I am praying about it and am actually waiting to hear back from Growing in the Son at SCC for the remainder of this year. I am not sure if they will accept her, or if they can accommodate her, but I feel led to see if she could learn in a classroom setting....

She LOVES our church and is already comfortable there...this may be a great way to help her learn.

I pray that they call back and if it is God's will, that they will have a spot for her, be open to have her, will teach her, and that Lilah will blossom like crazy even from just a few short months in the remaining year.

There are NO handbooks for what to do with your child, let alone your special needs child. Trial and error, prayer and petition, love and acceptance....and I pray I am making the right choices...

Time will tell. Only God holds the blueprints...I am just his servant.

His grateful servant.

Atlanta Bound Tomorrow

2012-02-07T10:48:00.000-05:00

Tomorrow morning we will be loading the car up with our family of six and heading to Atlanta for Lilah's appointment with Dr. Greenberg. The last appointment she had was for her post-op visit. In the few months since her Strabismus Surgery on her right eye, Lilah has improved TREMENDOUSLY!

I am at peace about the appointment and even the fact that Dr. Greenberg may recommend another surgery at a later date to correct the other muscle in her right eye. My perspective has improved as much as Lilah's walking has.

I am asking for prayers for safe travels for the Sharp Six. I am asking for God to hold Lilah close as Greenberg does all of the tests. I am requesting prayers for our children to be well-behaved as we travel the 13 hour round-trip(11 hours travel+ 2 hours appointment), during the appointment, and be understanding of the situation. I am asking that this appointment will go smoothly and if it is HIS will that Lilah needs another surgery that I will continue to trust in HIS plan for her.

Below is a video I took of Lilah this morning while she was patched. I wanted you all to see what she CAN do, what God has done, and the miracle that is Lilah Sharp.

Pretty incredible right?!

What strength, power, grace, thought-process and more. All of Lilah's therapists are SO impressed with her MANY improvements.

I believe that God isn't finished with her yet( any of us for that matter). I believe HE has great plans for her to continue to shine HIS light.

Thank you for the prayers for our family. Thank you for your support and love. Thank you for never giving up HOPE on her, us, and God's promises.

Much LOVE to you all,

Katie

Results of my Half Marathon run for Lilah

2012-02-04T14:27:00.005-05:00

This morning as I laced my shoes up to go run my 2nd Half Marathon for Lilah, I prayed a LOT. I actually woke up at 3 and couldn't go back to sleep. I checked on Lilah, changed her diaper, put her back to sleep and began to pray, do laundry, drink coffee...prepare.

One of the things I have started to do on my races is write the names of those I would like to pray for on my left forearm. As I look at my Garmin to keep up my pace, I look at the names listed and pray for these people by name. Some have no names, but they are prayed for.

On the back of my right leg I wrote "PHIL 4:13." Because I race because God gives me strength and I want to WHOLE world to know.

I got to Tybee extra early because I wanted to have a parking spot close to the finish and I wanted to have time to mentally prepare. As I made my way up to the start line, I ran into Nicole and Andrew Valles, my old neighbors from years ago who actually live in Atlanta. What an AMAZING surpass to see them and hug their necks.

The race began great. I paced myself pretty good since I was using this run as a training run and gauge to see how I needed to improve for the Disney Princess Half in 22 days. The course looped at a few places so I was able to high five Andrew, encourage him(he's much faster than me), and stay focused. I also high fixed a few FCA(fellowship of Christian Athletes) members along the way.

The COOLEST thing happened at mile 8. I saw the little boy I had been hearing about since I got to the race. A little boy, named Mason, 9 years old was running all of the events(26.2 miles total in 2 days) At mile 8 when I saw Mason, he was OBVIOUSLY hurting. God spoke to me. I slowed my pace, asked him his name, his age, and began to tell him stories. I asked him if he knew what my leg meant. He said , "no." I said, "It means, 'I can do ALL things through HIM who gives me strength' That means that you CAN do this because God gives you the ability." Then I told him about me, my family, and Lilah. I also asked the crowd to cheer for Mason. I said, "He is 9 years old, his name is Mason, he needs encouragement." Each time I shouted at the crowd, they would shout back, "Go Mason, you can do it!" Then at mile 11 Mason said his tummy hurt. I helped him find a bush and told him to be careful. Then I looked around at the spectators and asked a man and a wife to look out for the little boy who was going potty. "Please make sure he gets back on the course. He isn't my child, but he is some body's." I told them he wasn't my child, but God told me to look after him.

So, I kept running.

Then, all of a sudden I heard, "Go Mason" and looked back...and there he was right with me again.

He told me he likes to go super fast at the end. So, at mile 12.7 he said, "Can I go fast now?" I said, "Sure. You have about .5 of a mile. Go for it." And he took off like a lightning bolt.

See, God told me to encourage Mason. So, I obeyed. How do I know if Mason doesn't know Jesus? How do I know if Mason needed me? How do I know if "I" was the one who needed Mason?

Whatever the reason God placed him in my path I am grateful. VERY.

I turned the corner and pushed as hard as I could from 12.8-13.1.

And I did it. In 2:11. 15 minutes faster than the Disney last year. Over a min/mile faster.

THAT was a GOD thing!

Before I left Tybee I ran into Heather, Lilah's Speech Therapist from Babies Cant Wait.

We chatted and then I drove them to their car a little distance away. So great to see her and Matt. I miss her SO much and wish she could still be Lilah's ST.

On the way home from the race I got emotional about everything that had happened. I ran that race for Lilah...and myself. I ran that race encouraging others. Doing what God has told me to do. I felt a little sad because I had no one at the race to cheer me on. But, that is not what matters. When I came home THIS is what I saw....

Personalized Messages from My Mom and my kids...I LOVED IT!!

They are still on my garage, So, neighbors...and HOA...just deal with it. My babies are proud of their Mama :)

Today was a great race. Today was a great run. Today was a GOD wink...over and over.

Lilah,

I did it again for you baby. I pushed harder and faster. I worked hard and prayed for you. I am still working hard. I love you SO much. I hope you know that. We did it today. We shined HIS light. I told your story over and over. Someone needed to hear it. Someone needed to know HIM today. Maybe, just maybe the name Lilah HOPE will help lead them one step closer.

Mommy

Running for Lilah

2012-02-03T12:47:00.002-05:00

Tomorrow morning I will be lacing my shoes up VERY early and running my 2nd Half Marathon.

This race I JUST entered into because I decided I wanted to use it as a "gauge" run before I repeat the Princess Half Marathon in 3 weeks.

Each time I run a new race, I get nervous. Even though I have run that distance many times, I still get this feeling of urgency and anxiety and some fear.

When I run races I wear the same HOPE Tank top I have worn at the others. It may be freezing, but I still wear the shirt because I run for Lilah.

Tomorrow I am using the Tybee Half Marathon as a "training" run. I am praying that I can run this race with a great consistent pace, and also as a time of deep prayer.

I will have Philippians 4:13 on the back of my leg again. " I can do all things through HIM who gives me strength."

I will also have a list of names on my left arm to pray for as I run. If you read this and respond in the comment section(generous words of HOPE) with a prayer concern I will add your name to my arm.

Prayers for my strength, determination, perseverance, no injury, and a positive experience.

My last Half Marathon I completed in 2:26. I pray to finish this one faster and more confident that that one.

This will be my first long race I run alone. The first time I will be arriving alone, stretching alone, mentally preparing alone, and praying alone the entire race...BUT....God will be with me the entire 13.1 miles. As always, HE will never leave me or forsake me.

Thanks for the prayers and encouragement.

Much Love,

Katie

Look at her GO!

2012-02-02T15:38:00.002-05:00

As soon as my little Lilah bug decided to walk...there is nothing that can stop her. She is determined, enjoys it, and is so full of laughter and JOY when she moves independently.

Here she is this morning as I dropped her off at Therapy.( Yes, that is Lilah's gorgeous face on the wall to your left. Thanks to the incredible Christine Hall for donating those images to Backus and for choosing us for your vision)

And here she is after 3 hours of back to back therapies: Happy, confident, great posture, and rocking her petty skirt from Mic Mac's Bows( Thanks Michele)
After therapy we met Daddy for lunch ( older three were at my good friend Rachel's house so I could go to the doctor)
Lilah decided she did NOT want to sit down while she ate. So, in true "typical" toddler form...

She had to stand on the booth instead of sit. Boy, I MUST admit how much I LOVE watching her rebellious self. These "typical" moments bring me SUCH happiness!!
...and this was from last night. Watch Alex do everything to keep her walking.

Don't you just LOVE this?!

God ROCKS!!

Walking like an old pro!

2012-02-01T16:08:00.003-05:00

Yesterday Lilah got her new braces. Her third set!

A few days before she decided that crawling wasn't really as much fun as walking....

So, when she got her new braces yesterday... this happened. With her brother in the middle of Karate and her sisters cheering on happily...(less than a minute...but SO worth each and EVERY second!)

As you can tell there a few changes with her braces. An SMO on her left leg. (This is a shorter version that gives her a little stability but makes her work harder.) And an AFO on her right. (Lilah's right foot turns in more than her left and she drags her right leg a LOT . So, the AFO is much more support to help her turn her feet more midline, get more support, and walk in a narrower pattern)

This video is such great proof that our God is a miraculous God. He can do things that are never promised in this life, but always HOPEd for.

The determination in her face, the JOY, is not only contagious, it is infectious. Lilah was sent from Heaven to help us all gain perspective... and help us remember that if we BELIEVE and have HOPE.....EVERYTHING is possible.

Thank you for your MANY continuous prayers.

I. am. BLESSED. beyond measure.

My Promise

2012-01-30T05:15:00.000-05:00

I will always be there to hold your hand and guide you to where you need to go. I will never let go. NEVER.

Sometimes I will push you harder than you want to be pushed. But, know this my sweet Lilah, the more I push, the farther you go.
And the farther you go, the more I will cry... Tears of joy because you have found your path.

But, you must remember that no matter the path you are on or were given. My hand will always be there to help you, lift you up, guide you, help you stand tall...and walk on your own two feet.
I am your Mama Bear. And I love you with every fiber of my being. I am utterly grateful for each minute I spend with you. I am grateful for the hard lessons and the beautiful "tulips" in Holland.

Thank you for teaching me what life is really about. Perspective is a beautiful thing. Thank you for giving me the perspective I needed so desperately.

I love you SO much!

A trip to the Zoo

2012-01-29T15:03:00.005-05:00

A few days ago we took the kids on a very spontaneous trip to the Jacksonville Zoo.

Here are a few of the images I captured from our trip:

many of you know my love for the Big Cats. Too bad they don't have my FAVORITE: tigers.
We got a chance to feed the giraffes

Lilah was very interested in the goats that decided to lay down "in" their food bowls
Check out her studying them
Animals are God's natural art. The way they move, walk, fly, swim, act, their colors...

When I go somewhere....anywhere....I try to be present about thew world God created
and I am SO blessed to be able to have been given a gift(no matter how small it may be) to see HIS creation and have (somewhat of) an "eye" to capture what He made.

We fed the birds. Eli was the luckiest. Two birds at once!

I love Sammie's face here....
And this is a CLASSIC! The girls are posing for the picture and Eli is So mad that I am taking pictures....again. Sometimes it must stink to have a Mom as a photographer. Maybe someday he will appreciate it. Maybe.
and a great one of my beautiful daughters.
Thank you, God, for my blessings.

Each one of them!

Lilah HOPE walking and talking

2012-01-24T11:14:00.000-05:00

Watch this. Did you see it?

Did you see what I see in her?
Perserverance, Determination, never-give-up mentality...

SHE encourages me to NEVER give up...on anything...anything or anyone.

If God can use her to get to me and change me to a runner...a runner who fights hard when her legs want to stop, when her brain tells her it hurts, when her mind has convinced her that she cannot go on, but her heart says , "GO! Philippians 4:13"

THEN...
Jesus can use her to get YOU to do something you are scared of to....

Keep loving, keep trying, keep on being the hands and feet of Jesus.

ALWAYS!

Love

2012-01-24T06:28:00.002-05:00

There have been so many times that I have wondered if God was "proud" of me for the way I live my life. I have wondered, sometimes daily if I my life were to end today would I have openly shared Him and His love with others.
I ask myself this:
*was I the hands and feet to someone hurting?
*did I share my heart with someone who is lost, heading back in the dire tion of sin, or just needs me to shut up and be there while they cry it all out?
*have I loved like He would love?

At least one of these I would have to answer "no" to. I am not perfect. I "fail" in many ways each day.

That......is......ok.

For you and for me.

The difference between failing and choosing to live in sin, is that when we have the Holy Spirit in us we want to never be the old person again. We want to dig farther, deeper, harder to remove all the crud from our life so we can bask in His glory. We will fail. We are human. But, our failure doesn't give us permission to continue to live a sinful life just because we call ourselves a Christian and get baptized. True love for Christ and having Him in us means we NEVER want to be how we were. We beg others to call us out, hold us to the standards of God, and love like Christ does. Yes, we will make mistakes, but the same mistakes cannot occur everyday if Jesus lives in us. They can't because it's not possible.
When you have a relationship with Jesus(not a religion of stand, sit, kneel, look at me I'm a Christian), a pure, tell Jesus everything everyday, because He already knows, BUT you need and want Him in you, relationship....you change. How you see yourself changes. You don't see yourself as a screw up. You don't see yourself as unworthy. Nope, you see yourself as a work in Jesus. You see others as His work, too.
You forgive easier, laugh longer, love deeper, but also know when to say "NO" when tough love must be present.

2Corinthians 5:17 says that if any man is in Christ, he is a new creature. The past is gone. Each day is new.

This verse shows us that we CAN be made new in Christ. It doesn't give us permission to live daily in our sin. It tells us that if we truly desire Christ to live in us, we are made new and the old, bad, awful choices are never made again because Jesus steers the ship of our lives by our heart. Our hearts are different when we really let God in. Really let Him in.
Not for show, not for anyone, or anything other than ourselves and our NEED for Him in our lives.

Not sure about you, but I need Jesus in my life...and the old me.....she died a LONG time ago.

I'm not perfect, but gratefully and very blessed....to be new in Christ today.

Much love to you all...
Katie

Facebook...

2012-01-23T14:23:00.005-05:00

Many of you have tried to contact me and are concerned why....

I have deleted my Facebook account.

I will miss sharing and giving help to those who really need it, but there are things that have made me have to close it.

I hope that you will email if you need me and I promise to do my VERY best to update this website as I can.

Our family could use your prayers right now.

Thank you.

Truth...

2012-01-20T10:28:00.002-05:00

I shared this morning and thought I would share here, as well...

THE reason I share what I do with people is to show my brokenness, vulnerability, and weakness. I also realize that people can take that and use it against me, judge, criticize, and attempt to hurt my heart. That is a chance I must take...in order for me to continue to share the truth about Jesus. I MUST be real. Now, I will do my best to use better discernment in certain areas, but I also am called to tell that this life is NOT perfect. This life comes with GREAT days and HORRIBLE pain. BUT, if I keep focusing on the pain ONLY I will never be able to see, feel, and understand the JOY and peace that is found in CHRIST.
HE has redeemed me from the lies I believed from a VERY young age. 7 to be exact.
Satan will do everything he can to keep me believing those lies that I am not worth it, too fat, too ugly, not strong enough, etc, act. BUT, I know the TRUTH today.
Today I know that no matter what Satan throws my way, Jesus loves me unconditionally. He died for me, and YOU. He came YEARS ago to set me free of my chains. He also knew that I would have a HARD, daily battle to let those lies go. I would be surrounded by "things" that make me believe those lies. HE has used several life experiences to bring me to my knees. He has used those life-altering moments to break me from this world and focus on HIM.
HIS truth.
HIS love.
HIS redemptive, INCREDIBLE love.

Once you truly accept Jesus in your heart you will be changed...FOREVER.

Yes, you WILL face uncertainty and pain. I will guarantee that to you, BUT what I can promise you is a relationship with a SAVIOR that will lead to JOY.
Will you have days,months, and years of hurt? yes.
BUT, you can also be free. You can know that there is LOVE. REAL love, that comes with Unfailing promises. LOVE that will set you, YOU, the prisoner free. You can be Paul in chains, real chains in prison and still be free from the burdens of guilt, shame, and fear. You can know that if you ask HIM into your heart, REALLY ask, REALLY mean it and NEED Him, that HE can fix and heal all that is so empty and lost.
THEN...
you are changed. YOU are HIS...
Beautiful, made in HIS image, nothing-can-separate-you, sins are FORGIVEN, price has been paid, DEBT is gone.
THEN your behavior changes.
Once your heart opens HIM in, you finally let the sin out.
No, I am not a stand on the corner,yell at you about going to hell type...
I am a truth-talking, Jesus FREAK...proud.
I fly THAT "freak flag" proudly!

I ask you to please click HERE . Turn your sound on. Close your eyes. Keep them closed.

LISTEN...

Let the tears fall. There is freedom in them. There is freedom hearing the words God wants you to hear. Allow HIM to fill you back up. Please listen, please allow HIM in. Please allow HIM to heal your heart. ONLY Jesus can. ONLY Him.

No drug, no pill, no person, no drink, no thing, JUST Him.

Allow this song to minister to your heart...

"You're the one He madly loves....enough to die"

It just doesn't get ANY better than THAT!

Inspired

2012-01-13T13:39:00.003-05:00

For those that have read this (now website) blog for the last few years, you have been able to (hopefully) see that I have grown.

No, not in a "hey, you got taller" or a "Katie, do you have something you would like to share" but a perspective, spiritual, closer walk with Jesus growth.

See, I understand now.

I get it.

I really do.

I understand that Lilah was given to me for a very specific purpose.

I am not quiet. Not by any means.

I am a talker, a sharer, loud, outgoing, talkative- type. Sometimes those things have landed me in some serious hot water, but other times it has gotten me what I needed.

God sent Lilah to me because He needed to teach me. He also needed to teach others. So, even though I didn't understand at first and cried out to God in pain...He knew I would one day "get it."

Go back. Go back and read this website from the beginning...if you want and/or have time. Click on the link to your right and read. (her story from the beginning) Put yourself in my shoes. Allow yourself to feel my heartache, but then after your box of tissues is empty and then you get to share in the joys with me. You will begin to see that this butterfly has begun to spread her wings and fly.

I am finally able to see so much clearer than I ever have.

I am able to love in a way that I never once was. I am able to feel how GREAT our God is without just singing a song. I weep. I weep out of gratitude and thanks. My "valleys" have allowed for some amazing mountain peeks.

I am changed because of Lilah.

God used her to get to me...to my heart. To work in me and find the source of the "lies" I had been believing for YEARS...and let them go, learn the TRUTH...and be free. I was the prisoner in CHAINS of guilt, anger, pain, fear, bitterness, and frustration.

NOT today. No way. I am armed with TRUTH.

Delilah Hope Sharp was sent here as a teacher.

Last night at Karate another Mom came and grabbed my arm as I was walking to my car. She stopped me to tell me that her daughter saw Lilah through the window in her karate outfit and said how cute she looked and she wanted to see her. She asked if Lilah was joining her brother and sisters taking class and I said, "Not yet." Then I began to tell how I really want her to take. I want her to gain confidence and learn to defend herself. I think Karate would help her so much. Well, as I spoke a few other parents stopped and listened. Then they smiled and said how great they thought it was.

I got in my car and had an "I get it. Thank you , God" moment. 3 years ago I wouldn't have spoken to strangers like that. I wouldn't have shared about miracles and God and how awesome He is.

Today, I can.

Today, I watch as a little 35 pound miracle, stands up from a sitting position on the floor and walks in karate and shines Jesus' light for all to see.

Her "limitations" are shining God's light and proving HIS existence more than any of our normal "abilities."

I am so proud, grateful, and in awe that I am her Mother and I get a chance to be a part of this journey. Many, many thanks to Jesus for HIS wisdom.

Just having fun

2012-01-07T14:55:00.000-05:00

THIS is what it is ALL about...

being able to "fit in" in every situation, feel "normal" and enjoy life despite your "limitations."

Did you notice the legs moving back and forth, the standing, the interaction?

Praise God for all of this. I LOVE watching my babies play together.

Lilah's Listening skills

2012-01-06T18:52:00.001-05:00

I hope that you will watch this video and really pay attention...

Most "typical" children learn to follow directions and do as they are told at a very early age. For Lilah it takes her brain longer to process what you are asking her, what you mean, how to do those skills, and more.

This was taken tonight as we came back from our walk. She did as she was told quickly.

For me, this is absolutely HUGE.

Her brain is working. She listened, knew to turn her body, where to place her hands, she SAW it, walked closer to close the door, and more.

The "thought process" that it took her to accomplish that is extensive.

See, before Lilah I would have just thought, "great! my child followed a direction." Since having Lilah and watching her work SO hard at therapy EVERY day, (yes, she has some sort of therapy daily) I now have a greater appreciation for what it takes our brains to work.

My hope is that you will all see the miracle that is Lilah and know how awesome our God is and that He does exists and He does love us so, very much.

Bumble bee

2012-01-06T13:53:00.006-05:00

My Dad calls Lilah his Bumblebee.

My Dad and I have not always had the best relationship, but in recent years we have both grown and come to see each other very differently. You see, Christ can change us all in ways that one would NEVER understand.

Jesus has used Lilah to change us all...

My Dad told me this quote :

“Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know it so it goes on flying anyway.” Mary Kay Ash

Every time Lilah does something awesome my Dad will send me a text that says, "BUZZZZZ!"
Last week I came up with an idea for his birthday...
So I called a few fellow photographer friends and my sweet friend Christine who took our family photographs, has been a great friend to me, has mentored me in MANY ways, oh, and she is pregnant with TWIN miracle baby girls...agreed to come help me. Actually, Christine has been voted BEST photographer in Savannah for...oh Gosh...years now.....

Anyway, Chrissy told me she had availability that night...well, when the BEST says jump...you JUMP!
All of the images in this post are from the night that my vision came to life. MANY thanks to Chrissy for holding Lilah, taking pictures for me while I calmed Lilah down, got her to smile, dance, sing, etc
Chrissy snapped this one while I was loving on Lilah with my camera ( I probably should have sent all the raw images to her and she would have done this incredibly better)
and then the image below is what I had printed for my Dad for Lilah.... BIG. (don't worry, I sent him smaller copies of the others I couldn't decide which ones to print)
This "bumble bee" wasn't suppose to do many, many things...but by God's grace she has flown and flown and flown....

and she will keep on flying.

Jesus has given Lilah to me for me to tell of HIS greatness. He has given Lilah to me for me to help her fly. He has given her to me to mend relationships and help me see HIS love.

God thank you for sending this gorgeous Bumble Bee so I could see my Dad's heart.

Happy Birthday Dad(Poppa)...Happy Birthday.

Yes, Dad...I should have told you to get tissues first. Have fun showing off your gift at work...oh, and your welcome for allowing the ladies at work to see you cry while you opened it. I love you.

Katie

Lilah HOPE is a MIRACLE!

2012-01-03T13:08:00.000-05:00

This short video shows so much about determination, faith and hope. Remember just a few short months ago none of this was even happening...

Thank you, God for ALL of these blessings!

Lilah HOPE walks more

2011-12-30T08:38:00.000-05:00

Please watch the entire thing. The end is the best. Lilah is showing her TRUE self in this video:

What determination, desire, FIGHT, and even a little naughty side.

Go Lilah, GO!

Thank you, Jesus for THIS miracle!

I. Am. A. WALKER!

2011-12-28T17:40:00.000-05:00

For all that said she could NOT do it.... Here is some PROOF that

Philippians 4:13 "I can do ALL things through HIM who gives me strength."

and Matthew 19:26 " Nothing is impossible with God"

Are true!!

MIRACLES!!!

Good Morning singing and love with Lilah Hope

2011-12-14T08:48:00.000-05:00

Best way to wake up in the morning. God is working hard in my precious gift.

Lilah singing Twinkle Twinkle and ABCs

2011-12-09T10:54:00.000-05:00

She is amazing!! Isn't she?!!

Thank you, God, for EVERY thing you have taught me (and will teach me) through her.

God is SO good!!

Different, yet very much the same

2011-12-05T08:21:00.002-05:00

This morning I read an email from a woman with a son with the same deletion as Lilah. I read her email and at first I was SO excited that not only the link(that allows others to find Lilah and her deletion) worked, but that she wasn't alone.

Joyce also sent me a link to a study done in Spain about 8 other children with the same Chromosome 8 deletion. When I read the STUDY (click on the word study to read) I began to cry. Then, hysterically cry. Each term described her to a perfect T.

Why am I crying so hard?

I am not really sure.

Maybe that I stayed so strong during Lilah's IEP when the labels and terms started coming out all over again. Maybe that during that IEP I sat there, alone, with 5 "professionals" telling me all about my child and I smiled, stayed strong, fought for her, got her the services she needed, but I was alone in my fight. Maybe that I have been fighting, ALONE, for so long. Maybe that reading each one of those "lists" gets overwhelming. Maybe that sometimes I just NEED to cry.

I am not really sure.

Right now my emotions are just all over the board...

so glad there is more information
dislike the labels
need labels to get her the services she needs
I shouldn't feel sad. I should know it is just words that are listed on a study
this is Lilah. She is low toned. She has corneal opacities. She is delayed intellectually....

I don't want to react with tears. I want to react with a sense of "thank God" for the information.

But, there is a part of me that would LOVE to be "normal" sometimes.

**Please, for those of you reading this that do not have a child like mine, or if you do and you have been in "Holland" longer than me, please do not tell me how to feel, that my thoughts and emotions are wrong. I am, yes, allowing you all into my brain to see what it feels like and know that this journey that is so beautiful... does have days where you are quite sad. I am human. I am a very transparent person, but also...this website is my journal...my place to give my words and thoughts to God and allow HIM to work in those places of pain and heal me. I am following HIS call by being open with you all. Please don't bash my heart...for I wear it on my sleeve and it is bruises easily. Thank you**

Yes, I would like to be "normal." I would love to walk into Wal-Mart without people screaming at me through their car window for me to "move faster, pick her up, ugh" because I am allowing my child to "walk" slowly holding my hand from the handicapped spot to the door for more therapy.(yes, that did happen 2 weeks ago and the woman teaches at the school where my girls attended last year....another reason I home school...I don't want people like that teaching my children about patience, love, acceptance, etc when they obviously have none themselves(yes, that teacher was always like that in the school)) I would love to be asked to go to play groups and have the other Moms talk to me. I would love to be invited to events where Lilah can attend and not have people invite us because they feel sorry for us. Then, I wonder, is it really just me? Am I the only one that feels this way? Is there something wrong with me? or am I just having a rough couple of days and tomorrow will be better and I will have a new perspective?

I pray that the latter of all of this is true...

That the truth really is....this is just a moment of VERY honest, real, open feelings and that I cannot be strong every minute of every day. I still love my child...JUST as she is. I am still a VERY faithful follower of Jesus. I am just broken today.

This I know...

somewhere after I have bawled like a baby and asked God why again and told HIM how much it hurts...somewhere...somehow... I have FAITH...

HE will restore my heart and make all things new and HE will allow me to "see" better than I do today.

Right now, I have opaque corneas.

Right now I am at a loss of how to make it all work. Right now my house is a mess, I am covered in laundry, Lilah's paperwork is all over, my home school closet needs to be organized, I have 13 sessions to edit....and I am re-living each moment of the last 3 years.

I know how far she has come. I know that God isn't finished with her...or me yet. I know that this is just one day.

I need this cry. I need to give it all to God. I need HIM to come and remind me of truths.

And even when I am alone in this world....I am not alone because HE is always with me. Jesus will never forsake me. This truth I know...even as I sit and bawl and ask HIM why again.

Jeremiah 29:11

Uncertainties

2011-11-28T09:01:00.003-05:00

In just a few days time Lilah will have her 3rd MRI.

This MRI will be brain, thoracic, and lumbar. Last year the MRI showed that her spine was not tethered but that she has an additional lumbar vertebrae. The MRI was to show if she would need surgery on her spine.

Dr. Thompson (neurosurgeon) wants to repeat the spinal portion to verify the additional L6. He is concerned that there is something missing...as am I. See, Lilah drags her right foot a LOT when walking with her walker. She also isn't potty trained and for a child with her disabilities and at age 3...there is a concern that the spinal cord really is tethered. Tethered spinal cord could hinder her ability to feel and understand when she needs and has to use the potty. This would mean Lilah would need surgery on her spine to UN-tether the cord. ( yes she could be delayed in potty training due to her lack of understanding and more but tethering could make her incontinent)

Dr. Moretz( Neurologist) wants the brain portion repeated to verify that the issues with Lilah's grey matter have not increased. If you remember there was finding that Lilah has a small corpus callosum and that her grey matter didn't form correctly. This could mean that somewhere Lilah had brain damage or that her brain just didn't develop like it "should" have.

Because Lilah has steadily improved we haven't been too concerned, BUT Moretz feels that yearly MRI's on the brain are imperative due to the brain and eyes working so closely together and because of Lilah's significant delays.

Here are my concerns and requests for prayer and discernment:

* If Lilah's cord is tethered she will require surgery on her spine to UN-tether it

* I have heard many different views on Dr. Thompson's surgery practices, things he misses, etc

* If she needs surgery there is a chance that her walking could be halted...forever. Risks to spinal injury

* If the MRI shows that Lilah has brain has damage...questions arise as to where and when it happened. In utero? At birth? Did she not get proper oxygen at birth? Was there something that should have been reported? What about when she came out and had trouble breathing? Did that cause her damage?

I am laying it all at God's feet. I do not know the plans HE has for Lilah. I must trust Him to know what the path is. I am her Mama and I am fearful of the unknowns for her. I want the best for her. If she must have surgery on her spine I want the BEST person operating on her. I will go to the ends of the earth to find the person she is meant to have operate on her. If this is just another test then I will do my ultimate best to trust in His leading me here to teach me something.

I am requesting prayer. I believe that prayer either changes things, the circumstance or our perspective on it.

I keep begging God to heal her spine, her legs, her brain, her eyes, but I also know that HE has led us to this place to help us all grow. I pray that Lilah will not need surgery, but if she does...that the right hands will operate on her and she will NOT have complications. I pray that she will be able to walk and she will not have injury that will cause her walking to cease forever. I pray that the brain MRI shows that she does not have damage and that there is no growth or increase problems in the ventricles.

I know that all of this must lay in HIS hands. I must trust that all will work out. I will keep praying and believing....and still being human.

Thank you to those who can help me understand all the medical ins and outs, who will guide me correctly, will pray for us, who will hold my hand as I hit weak moments and cry hysterically. I need you all. I appreciate you.

Much Love and Many thanks,

Katie

Happy 3rd Birthday Lilah!

2011-11-25T05:13:00.006-05:00

Three years ago today an angel was sent to earth. I had no idea what a blessing I was holding in my arms with her surprise pregnancy, birth, and diagnosis. I was the blind one. I was so scared, sad, shocked, mad hurt that no "test" told us our child was different. The ONE sent her to me and I was questioning HIM why.

3 years later, many tears shed, many battles fought and won, some lost and thankfully I have a VERY different perspective on Lilah, the experience, and her gift.

You know, it really is true. What you think will break you, only makes you stronger. But honestly, I needed MY eyes opened. I knew that Jesus loves us so completely, so perfectly, but there was SO much I was missing. Lilah has shined HIS light in my life...in MANY lives.

What our "world" considers beautiful isn't what God looks at. He looks at our heart. He digs deep into your soul and sees the little girl who was hurt so long ago and knows she needs an angel to help her really see how GREAT and VAST HIS love is. So, HE allows you to walk through the valley. He allows you to be stripped and broken from everything this world has and HE helps you to understand that we "walk by FAITH, not by sight."
He shows you that you not only have courage, strength, love, kindness, abilities, but that you are BEAUTIFUL in HIS eyes.
You may not see HIS blessing right away and you may lay your head and cry. THAT is OK, HE knows what HE has planned for you and HE knows that once you can REALLY see...you will understand why and you will be more thankful to HIM for that storm and valley than you could ever know. You will then look back and wished you would have trusted the entire time and had HIS joy close, but don't worry...HE is not mad or disappointed. No, no, no...quite the contrary. Jesus is crying tears of JOY because YOU finally see. YOU finally feel HIM like HE has always wanted.
HE will do ANYTHING to make us see HIM. And if we are too blinded by our own past, failures, anger, pride, hurt, the LIES we have believed from Satan all of our lives...well, HE will find whatever way HE can to help you understand how deeply HE loves you...like NO one else can.

THIS is what Jesus has done for me with Lilah. I have always been a believer. For as long as I can remember. I cannot even remember a time when I didn't pray or believe HE existed. I have believed...but I didn't really understand it. Today, I not only understand...I feel HIS presence. I see HIM working in others lives and I am just in AWE of Him.

I spent way, way, way TOO long being sad. Not just about Lilah, but about everything horrible that had happened to me. I was allowing Satan to rip and rob me and hold me in such chains. I was missing the JOY I so desperately desired. I blamed others, made choices that I should NEVER have made, did and said things that I wished I hadn't because I was so hurt by the lies Satan was telling me.

Today, I am free. I am free because I really get it. I cannot begin to even start where and how it all happened, but I will try. Lilah was sent to me, and that broke me...even farther than I already was. Then last October I was asked to go on the Walk to Emmaus. (Life changing!!) I couldn't help but see and feel and understand HIS love. The women from my walk helped me SEE and FEEL Him. A few months later, I took the Captivating Study at SCC where one of the ladies from my walk, Barbara leads it. If you are a woman reading this, please....I beg you..PLEASE click on the word Captivating and buy this book. PLEASE! If you live in the Savannah, Ga area...go to the study that Barbara Feemster leads at SCC. YOU will NOT regret it!

I met some wonderful women and I shared such personal things that even those who know me closest probably don't really know the truth. Then, I found it...I found the place where the lies began and I allowed Jesus WAY down to that VERY dark and hidden place and I let HIM in. I allowed HIM to heal what was broken in ME...and then...I could finally see.

At first I began to have guilt about not seeing HIS presence in it all, but then I remembered that is NOT what HE wants. So, I let GO and....I began to live.

And today, this is how I see myself and I see Lilah ....
Lilah,

YOU have changed me. God sent you to me to change this broken heart. HE knew that you were not just going to change me...but so many. Look at what you do to people! You light up the room and bring a smile to their face.
God is using YOU to help us see what a mess we are without HIM and only HE can fix us.
YOU are here to shine HIS light and help us all see with HIS eyes. Lilah, I love everything about you. I love your heart, your laughter, your eyes, your beauty, your giggles, your FIGHT, your perseverance, your WILL. I am in AWE of you. I don't even have enough words to tell you how deep my love is for you.
Your strength has taught me SO much about myself. I have done things that I never, ever would have done. YOU, Lilah Hope, are the strongest woman I know.
I am so thankful for what Jesus has done in you physically, but I am in tears at what He has used YOU to do with me emotionally. YOU were sent to heal me. I see my worth now. I am trying things that I never would have before you. I watch you fight at therapy and I know I must fight even harder. I am learning so much from you, my sweet girl. Your song couldn't be anymore truer than it is today.

"...sent from Heaven to me"

Lilah, thank you for the last 3 years. Thank you for each moment. Thank you for changing me. Thank you for smiling. Thank you for loving me even when I didn't understand. Thank you for teaching us. Thank you for showing me peace and joy. Thank you for healing us.

I love you SO much. I thank Jesus for you...every moment, of everyday.

Happy 3rd Birthday Lilah Hope Sharp!

To Brandon Heath,

2011-11-13T18:52:00.003-05:00

When Lilah was born almost three years ago, the Dr. that diagnosed her eyes said that, "God didn't make these eyes right."

I actually believed his curse. I couldn't hear God's truth.

Listening to Brandon Heath's "Give me your eyes" I remember begging God to give Lilah HIS eyes so she could see. I would cry hours at a time. I couldn't see that God sent Lilah to me to open my eyes.

3 years later I have very different eyes.

I see the blessing that is Lilah Hope Sharp. I see the blessing in my home and now know that I am called to share HIS grace with you all.

Aaron and I were very blessed to not only go on the music boat, but I was able to have a conversation with Brandon Heath and his Dad. I was able to tell Brandon how "Give me your eyes" has ministered to me in many different ways over the last three years.

Brandon,

Thank you for your music which has inspired this Mama Bear more than you could ever know. Thank you for sharing God's word through song. Thank you for allowing all of us to see that HIS eyes are not of this world and that we are made for HIS work. Sharing my testimony and Lilah's story with you blessed me to speak those words back out. Thank you for not only listening, but for being humble enough to see that you really helped me and my family.

Keep on singing!

God Bless,

Katie

I ran a MARATHON!

2011-11-07T14:36:00.001-05:00

Do you remember me telling you that I was training to run my first marathon(26.2 miles) for Lilah? Do you remember me telling you about my fear for that race? Probably not. I was nervous. I was scared to put my feet to the pavement and actually run 26.2 miles.

My sweet friend, Melissa, who ran my first 5K and first 1/2 marathon(13.1) drove from D.C. to run with me. We had been writing, Facebooking, and calling each other to keep up and help each other stay accountable.

On November 5, 2011 at 3:30 am I woke up and got ready for the marathon. I prayed, I drank my coffee, and I asked God to lead me as I ran these miles for my girl. I also wrote names of people I wanted to pray for on my left forearm. I kept myself focused on them as I ran.

I will tell you the truth. As someone who ran her first 5K 18 months ago, then her first 10K, then her first half marathon. The marathon was one of the hardest things I have ever done.

We started the race at a great pace. It was cool almost FREEZING. But, that was great. It enabled us to get into a pretty steady rhythm without burning out too fast. At mile 7 I heard my name and there was my friend, Lauren with her husband Chase and their children cheering us on. I lifted my hand up and signed, "I love you" and kept running. Thank you, Durrence Family for cheering us on!

At mile 11.6 the half-marathoners parted to the right and we went up the on-ramp to continue on. At about 13 miles we saw the winner on the other side of the highway on his last few miles. (little did we know the torture that was waiting for us at that exact point)

Melissa will be the first to tell you that I cried a LOT during this race. At mile 18 I felt as if I was a failure. I was hitting the wall. My shoe laces were tied too tight and I had to stop and loosen them. We had just past Heather, Lilah's speech therapist, who had come out to cheer us on. Thank you, Heather, for showing me your face and cheering me on!

At mile 23 I had to walk...a lot more than I wanted. That mile was hard we were running on the on-ramp to the Truman Parkway into a strong headwind....this was the torture I was talking about.

At mile 25 my friend, Liz, who ran my first half marathon with me and Melissa, and trained many miles with me...was working the water station. She cried and hugged us and I just couldn't speak. I was SO emotional. So full of pain, fear, ready to see my family. I was too full of emotions to even utter a sound or a smile, but I did cry as I hugged her.

With every ounce of my being I started back into a slow run...then I heard his voice...

there he was, my sweet husband, with my camera, calling out my name, and Melissa pointed....

(here we are about .2 from the finish line)

as I ran past him I began to cry as I held up my sign, "I LOVE YOU" to my husband.
at this point I heard him say, "Lilah's down there." I began to cry harder. I looked through the sea of people and then I saw her, and Alex, Sammie, and Eli...with my Mom, my friend, Rachel and there was Heather, Lilah's Speech therapist, too.
Here I am with my muse, my inspiration, my HOPE after crossing 26.2 miles for her.

Hugging my Mom as I held my miracle was a very emotional moment.

And here we are "Team HOPE" with our inspiration. We did it! 26.2 miles!
(you can see the names on my arm. if you look close. of all of those people I prayed for)

Melissa,

I cannot even begin to thank you enough for what you have encouraged me to do...

You coached me through my first 5K, encouraged me to run my first half-marathon, then agreed to run a full marathon with me. I know I wanted to give up a LOT. I know I am not the easiest person to run with. What you have done with me, and for me, and for my girl...priceless. You gave me confidence and courage to finish...and we did it holding hands. Many times you could have completed this race in such a faster time than we did. Many times you could have given up on me, and I am sure you wanted to. Thank you for coming back to me and pushing me to fight.

I love you. I am grateful to you....more than you will ever know.
Much love and many thanks!

Katie

And here I am stretching post-race...medal on...and my sweet girl crawling to me.
This was written on my leg and many people commented as we ran the last few hard miles. Many people said, "YES! I can do all things though HIM who gives me strength."
I am proof that this verse is true. 18m ago I ran my first 5K in 39minutes, then my first 10K in 61minutes, my first half-marathon in 2:26:00 and then I completed my first full marathon in 4:50:20. ( my goal was not to run for over 5 hours and we made it in under 5...to me, that is huge )

I want you all to know that when you put Jesus as the center of your life, you CAN do anything. Have you ever heard of Team Hoyt? A very disabled child asked his father, via typing, to run a marathon for him...this father trained and trained and eventually ran an Ironman pushing and pulling his disabled adult son. His son asked and his father responded...and showed his son...I CAN!

Lilah hasn't asked me to run, but I run for her because I see her fight at therapy. I see her fear. I use that as inspiration for me to push myself harder and faster then I ever thought I could. I run because Lilah cannot at this stage of her life. But, I CAN. I want Lilah to know that her Mama was fighting just as hard as she was...and I was scared too. When the day comes and Lilah tells me that I have no idea how hard it is, I will tell her she is right. I don't have any idea. But, I did do hard things for her and I didn't give up...even when I wanted to. I want her to know that her Mama was fighting just as hard and just as tired and just as exhausted. I want her to see that I was there...right there....never giving up HOPE.

The most BEAUTIFUL flower girl...EVER!

2011-11-01T14:43:00.007-04:00

On September 3, 2011 I received an email from this wonderful woman: Morgan. (Here she is right before she walked down the isle)

The email said this:

"We only have a few people standing in our wedding and these are people we are very close with and support us. But I always want to include people that inspire me on my special day. That is why, I would like to ask you if Lilah would be the flower girl in our wedding. She will not have to stand up at the front the entire time, and you or her sisters can hold her hands and walk with her down the aisle. But when I'm envisioning my special day, and all the obstacles ahead of me, I immediately think of the strength and child like faith of Lilah. And I can think of no greater honor than to have her be a part of a day I will never forget."

This beautiful woman of God made me cry and my heart skip a beat. I immediately said yes and knew God would find a way to get Lilah down the isle.

Did I mention I had never met her in person before? That she had read this website and we were friends on Facebook and are fellow Savannah Christian Church members? My heart immediately thought, "I don't know who this woman is, but the fact that she wants my angel in her wedding speaks volumes about her as an individual."
The little stinker was SO cute at the rehearsal. She was so full of life and love...as always!
Here are a couple of images of Morgan and Lilah on her special day....
Lilah fell in LOVE with Brian, Morgan's life-long friend. Brian melted my heart as he paid such sweet attention to Lilah.
Lilah was so happy that day. She was radiating God's love!
I think she looks like a doll in the next image. ( thank you to my friend, and client, Amanda Byrd, for loaning us this INCREDIBLE dress!)
Can't you just see God's love in her face?!
I told Aaron that I didn't think Lilah would walk if I put her on her walker and walked off, but I did think if he put her on, she would walk forward to me. Here is the only image I got of her walking down the isle.

She tried to give up. She sat down, fought Aaron and cried, but she finally put her hands on her walker and made her way to me up front.

When she got there...
the congregation clapped. Needless to say, the above image is the ONLY one I have of that moment because my eyes were SO filed with tears that I couldn't see.

After Morgan and Glenn said their vows they had Pastors and people who have influenced them on their walk with Christ come forward and lay hands on them and pray. This was one of the most BEAUTIFUL moments I have EVER witnessed at a wedding.
Here she is, walking back down the isle to her Mama. I cannot begin to tell you how very proud of her I am. This was one of the GREATEST days of my life. ( Thank you Aaron for capturing this! I will have this image in my mind as I run for her on Saturday)
We had so much fun dancing at their wedding. This image will be repeated one day..I just know it. I know that the Lord has a man planned to LOVE Lilah JUST as she is. Someday Aaron will dance with his daughter on her own special day.
LOVED seeing her dance with her Daddy! Warmed my heart So much. ALL Dads should dance with their daughters!

My Mom came to see Lilah walk down the isle...and we had a blast dancing with the flower girl!

Dancing hand in hand with Lilah was one of the most heart warming moments of my life!
Even Eli twirled Sammie on the dance floor.

I cannot begin to tell you how PROUD I am of Lilah. She tried to quit. She tried not to walk down that isle, but she didn't give up. She did it...
and as Glenn said just after the ceremony, "We are here to make God famous and she shines HIS light."

Yes, I cried MANY happy tears that day.

Congratulations to Morgan and Glenn.

Thank you for including Lilah on your special day.

Almost time..

2011-10-28T13:16:00.004-04:00

Quietly I rise each morning and lace my shoes and go outside and run. Before the sun, before my family wakes, I am running. Many mornings I have been running for hours while most of you sleep.

In 8 days, on November 5, 2011, I will be running my first full marathon. 26.2 miles. Yes, you read that number correctly.

18months ago I ran my very first 5K. I was a nervous wreck. I had never run a race before. But, my cousin's wife had just gone to heaven and I wanted to run for her and how hard she fought breast cancer. I was also running for Lilah. I wanted her to see that her Mommy tackled a big fear and tried something very new and scary. My friend, Melissa, ran it with me. She ran slightly in front of me. She turned around every few minutes and told me I was almost there. Then, right before the finish line, she slowed up and watched me cross the finish line. The race photos showed her cheering me on from behind. I will NEVER forget that moment!

That night at church, she asked me to run the Princess Half Marathon with her. I told her she had lost her mind because I had just completed 3 miles and thought I would die. She told me I had months to train.

I did. On February 27, 2010 we dressed in tutus and tiaras and ran 13.1 miles through Disney World with our black tank tops embroidered with HOPE. We were running for Lilah. At the finish line Aaron held Lilah up so I could find my family. I cried with Liz and Melissa as we crossed the line.

One more time I am lacing my shoes and running for my girl. And this time, even more than the last, I am more nervous. I sit here with ice packs on my knees resting my overworked body as I type this. I sit typing with hands trembling as I realize what I am about to do for my child. For my family.

I want my children to see that their Mama was dedicated. She didn't give up. She didn't give in to the pain and fear. She was determined to cross that line on her feet.

Melissa and I talked the other day and her words brought me to tears. She said, "Katie Sharp (she always calls me by my full name) , I don't run 26 miles for just anyone. I am running this race with you...for her." Tears streamed down my face as I listened to her.

One more time, team HOPE will be running together. We will be in those same black tank tops embroidered with HOPE.

God has given me this child for a reason and a purpose.

I just laid her down for her nap. As I lay in her bed next to her. Her sweet little voice asking me to "SSSSSSS" for sing, I see the mighty GIFT that God has given me. This sweet soul has taught me SO many important lessons. She has taught me to fight for her, to fight for myself, to never give up. She has taught me that I have a purpose, that I have a gift and that I am here to spread the good news.

I am not a "strong" person. I am not superwoman. I am not different than any of you. I draw my strength from Jesus. I credit HIM and HIM alone for all of this. For everything.

I know that those of you reading this are wondering how I am finding such joy in each moment when months ago, not too long ago, I was still stuck in SO much grief.

John 9:3 “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him."

I didn't see then what I finally do today. Lilah has changed us all. She has made us closer to Jesus. She has made us realize that we CANNOT do this by ourselves. We cannot do this on our own power and strength. Lilah was sent to me to teach me that I can do ALL things through HIM...and you can too.

Did I ever think I would be running a full marathon? NO WAY!!! Did I ever think I would be running for hours? NOPE!

But, I also never saw myself as the mother to a child with needs. I never saw myself as the person who would put her foot down and say what she needed. I never saw myself as Jesus' child. I thought that HIS grace was for everyone BUT me. Boy was I wrong. HE came to save us ALL. HE is inviting us to a life of freedom and grace. All we have to do is reach our hand back out to HIS that has been there all along and accept HIS offer.

Do you remember me telling you earlier in this post how Melissa watched me cross that finish line and cheered me on? She did for me what I have been doing for Lilah. I have been cheering her on to walk, talk, grow and learn.

In 8 days I will be drawing strength from Jesus as I run 26.2 miles. When I cross that line, and YES I will, it will be one of the most emotional moments of my life.

I will have done something that I never thought I would EVER do.

May I ask you to pray for me, Melissa,the other runners, and the people that I am quietly praying for as I run 26.2 miles for HOPE.

Philippians 4:13 is what I repeat as I run my long runs in practice. And this will be what I recite as the miles increase and I want to quit:

"I can do ALL things through HIM who gives me strength!"

Lilah's Laugh

2011-10-26T08:10:00.000-04:00

Her sweet laugh is so contagious. This is sure to brighten your day. I'm not sure why it uploaded this way, but at least you get to hear her giggles!

She is SUCH a blessing!

Strength

2011-10-21T09:28:00.001-04:00

To me, this image speaks VOLUMES about her perseverance, strength, and progress.

The Lord has really blessed us!

I am SO cute!

2011-10-20T19:24:00.001-04:00

Don't you agree?!

WALKED

2011-10-16T21:08:00.003-04:00

Slowly we have been trying to help Lilah gain confidence by walking with our hands. Then we have gotten her to walk with just one. Side by side we walk...and I LOVE these moments.

Tonight as we decided to take a family walk down the street. I asked Aaron is he would take a picture of her as we walked by one of her signs. Little did I know what God had waiting for me.

45 minutes after this picture was taken on my cell phone, we made our way back home and I slowly let go of her hand...

and ...

she did it!

Lilah Hope Sharp took 3 steps unassisted!!

Yes, you read correctly...my girl walked!

and yes, she was mad as all..you know what when she realized that she did it on her own...

But, that is JUST it...

She did it!!

And now that I know she can...Mama Bear will continue to push her so she CAN do more.

Nothing will hold her back!

Praise Jesus for THIS blessing!!

My special child from HIM

2011-10-14T11:20:00.001-04:00

GOD GAVE ME A SPECIAL CHILD

God gave me a special child--

Softly, gently, meek and mild,

I was chosen by His grace--

To be the mom of a special face.

Little one so tender and true--

How my heart beats with love for you!

I love you forever just as you are--

You are my little shining star.

Different you are, different you’ll stay--

God made you special,

He loves you that way.

When challenges come as you grow old--

May God give me strength to be so bold,

Fearless, not helpless, but in Him I trust--

I am your mother, care for you I must.

Gladly I will for the rest of my days--

The Lord knows his plans for all my ways.

I made a vow which I will fulfill--

To care for you always,

And always I will.

God really is working in her life

2011-10-14T07:30:00.000-04:00

Yesterday while her older sisters were in dance class, we practiced some one-handed walking. What you are about to see was taken with the camera on my phone. Please watch. Not only did her big brother reach his hand out for her, help her, but Lilah walked holding one of my hands on many different textures. This video speaks volumes about God, HIS miracles, and his love.

Thank you for continuing to pray for our family. Our sweet Lilah is doing HIS work daily.

Many Thanks

2011-10-03T15:01:00.002-04:00

In our home prayer is something that we do with our children frequently throughout the day. We believe that prayer changes things.

Sometimes the circumstances change for God is a great God and He listens and answers our prayers.

Sometimes our perspective changes and we see things MUCH more clearly than we did before.

Sometimes we get a YES and a miracle occurs. Sometimes we get a No and we must understand that the No comes not because we are being punished, have done something wrong, or haven't done all we could. Sometimes the NO comes because we cannot see the bigger picture that God has planned for us in this life and the next.

Prayer helps us focus on HIM and find joy in all situations.

I will be the first one to tell you that MANY of my prayers have been answered...many miracles have occurred. But, MANY of my prayers have not been answered.

What I do not know is that God has a plan greater than my eyes can see. Sometimes I tell people that Lilah can see more than me. For she is joyous in almost all circumstances.

The Lord sent her to me, and my family, and those of you reading this...to teach us. He sent her so we would realize how precious life is, how we should take nothing for granted, how no matter how much we "try" to control the situation...it is always out of our hands.

Lilah Sharp, I am grateful for you. I am grateful for each and every moment I get to spend with you. Even those that pain me. When I am stripped of all that I can control in your life, God teaches me to rest solely in HIS grip. When there are no answers and I want to scream and shout...I must turn my eyes on HIM and focus on what HE is doing with us. He is using us to help lead others to Him. I never asked to be a "witness." I never asked to bear the cross of such pain, and watch daily as my child struggles. But, neither did Jesus.

HE didn't ask to be born with the intention to die for you and me...for all of us. But, HE knew that HE had a purpose and that God had a plan. So, He prayed and asked God to take the cup from Him if it be thy will. Well, the cup wasn't removed. He took the punishment for all of us. He took it so we could find freedom in HIS name.

I may not always see that Jesus is using us. I may not always want to be used. But, I believe we are here, together, for a great purpose. Thank you for teaching me daily.

I love you more than you will ever know.

My sweet Lilah Bird!

Thank you for the constant prayers, love, and support.

We love you all!

Lilah Talking and singing and signing

2011-10-02T14:06:00.000-04:00

Please watch this and you will see how far she has really come. We thank you for all the love, support, and prayers. We cherish them more than you know!

More info on her Chromosome 8 Deletion

2011-09-23T08:57:00.001-04:00

After I begged for help, many of you forwarded this website, asked friends and family and kept the word going.

THANK YOU!!!

A friend of mine sent it to a friend of his who is in genetics. Some of this email makes my head spin, because I don't quite understand it, but some of it makes me understand my girl more.

Will,

I would definitely ask for a referral from one of Lilah's physicians to see a geneticist at Emory. Lilah's mother's feelings about this situation are completely warranted and normal. Genetics referrals can take time as well because there are not many geneticists in the state of Georgia. I don't know how much Lilah's mom understands about her test results, but basically Lilah is missing a section of chromosome 8 in everyone of her cells. The test is called a chromosome microarray test, and its purpose is to identify extra or missing pieces of chromosome. Chromosomes have two arms called "p" and "q" and the "q" in 8q21.11 tells us that the deleted section is missing from the q arm of chromosome 8. The numbers following the "q" in the description of the missing section of chromosome 8 describe the section's location on chromosome 8, similar to a map. I have personally seen multiple children in the pediatric genetics clinic in Arkansas who have had the chromosome microarray test. Sometimes this test allows geneticists to give a name to a condition and other times all we know is what genetic material is missing. Lilah's case seems to be the later, or in other words there are probably few, if any, individuals with the same exact deletion as Lilah. I did a quick search of the national medical database, and came up with multiple similar case reports but nothing that was exactly the same as her deletion. The geneticist at Emory could help make sure that Lilah gets all the appropriate care she requires, and will continue to follow up with her. Hope this helps.

Jacob

So, we do not have specific answers, but as I have guessed, and sometimes worried about.... it looks like Lilah is the first case documented.

I mentioned this to Dr. Sutherland, the cardiologist in Atlanta, and he said what Joey, Lilah's GaPines rep says too...Lilah may be the first case, but because I am putting all the information out there, I will help pave the way for other families who encounter this deletion. Not exactly what I had hoped for Lilah, but I suppose this is the path God has chosen for my very outgoing, outspoken, loud, tell-it-like-it-is self. Maybe God really is using me and Lilah in more ways than we could ever imagine.

Thank you for helping me...ALL of you. I will not quit. I will not give up. I will continue to fight, and fight, and fight...because that is who I am...I am Lilah's Mama.

Atlanta trip for Cardiologist and Post-op visit

2011-09-22T21:16:00.010-04:00

Tuesday Morning Aaron and I were dreading the 11 hour drive that was in front of us the next day. We were so tired from work, home school, therapies, doctors...life that we actually began to think we should take money from savings and purchase tickets to fly to Atlanta. Well, God's timing is ALWAYS perfect...

Just minutes before we pressed the "purchase" button, Angel Flight called...

We had a flight!

A sweet man named Winn Baker had volunteered his time and his plane to take us to Atlanta for Lilah's appointments.

Wednesday morning arrived and I got up way too early. Nervous, scared, anxious, overcome with emotions, my brain woke me up at 3 am. I tried to go back to sleep. I wrapped myself up in the Prayer Shawl that SCC had given us. I was just too anxious. So, I got up and made my coffee and started doing laundry and talking to God. Before I knew it, I hadn't even gone for my run and it was getting close to time to wake the kids. I put my clothes on, tied my laces and ran before the sun. I just gave it all to God, and asked Him to help me to trust Him with today...as all days.

I came home, jumped in the shower, and hurried to get the kids dressed.

My sweet friend, Melanie C, offered to watch Alex, Sammie, and Eli for us while we were in Atlanta. THANK YOU, Melanie!!

Once we had the kids settled at Melanie's, we made our way through the Gulfstream traffic to Signature airport where we met Mr. Baker. He escorted us to his plane and Lilah and I made ourselves comfortable in the back while Aaron rode up front with Mr. Baker.

I, of all people, forgot my camera, so the images and video you see are taken from my phone.

Me and Lilah at take-off!

We went through a few rain storms, several clouds, some bumps, and the most beautiful rainbows.

Two rainbows! That is a promise from God (remember that verse in the Bible?!)

The left side of the plane was dark with the rainbows and the right side....

Beautiful!

God sure does paint us some gorgeous pictures, doesn't He?!!

Once we landed, we took a taxi to Sibley Heart Center at Children's Healthcare of Atlanta (Scottish Rite)

The first test they did was the ECG. (Electrocardiogram) Lilah cried when they placed the electrodes on her chest, but began smiling when they blew bubbles. Her favorite!

We spent almost an hour trying to find the "strips" from Lilah's surgery where the arrhythmia's were present. The nurse practitioner couldn't find the strips, so they decided to go ahead and do the ECHO cardiogram. This is an ultrasound of the heart. They look at each chamber's function and watch how her heart works.
Lilah's PDA(Patent Ductus Arteriosis) has closed. YAY! But, now she has an PFO(Patent Foram Ovale) She has a small hole in the atrial septum of her heart. 15% of us walk arounfd with this and have no idea. We also learned that they believe Lilah has PVCs (premature ventricular contractions) when she is at rest. Basically, when Lilah goes to sleep her heart beats differently than it would when she is awake. But otherwise, a "normal" functioning heart.

This is the theory. To confirm this, Lilah had a 24 hour heart monitor attached to her before we left Atlanta. The results of this will be determined once we send the monitor back, via UPS, tomorrow morning. The Cardiologist, Dr. Sutherland(SWEET man!!) will then go over all of it and let us know what his final outcome is.

Then we had about a 35 minute break. Our friends, Jennifer and Jason Reyes, picked us up and we ate a very quick bite at Chic Fil A before heading to Lilah's post-op appointment. Thank you Jenn and Jason for coming to meet us and spending a very quick trip with us! Miss you guys!

Next we went to Dr. Greenberg's office. He was very pleased with Lilah's positioning of her eye. He wants to see her back in January. I am to continue the patching....5 hours a day.He filled out the forms for her PSI(pre-school intervention) evaluation and we discussed what "legally blind" would be like in a "classroom" setting for her.

I remember when those words would sting me so bad, but you know...time has taught me, along with her other delays and needs, that some sight is better than no sight.

We called for the taxi and headed back to the airport to meet Mr. Baker.

Taking off...

and a little cat nap...
Mr. Baker flying the plane with Aaron next to him
We made it home JUST in time to go to SCC where we praised Jesus for His faithfulness and we helped our church family write scripture on the floors of the new elementary wing before the completion of construction...

Romans 15:13

Luke 7:22

Proverbs 3:5

The BEST part of Wednesday, was during the ECHO... CHOA(Children's Healthcare of Atlanta) is AMAZING! Seriously, Savannah could learn a LOT from them. During her ECHO, Lilah looked at the lights from the drop ceiling above. I went over and over the colors with her. Then, God spoke through my girl....watch this video and hear what happened...

That's right...

Lilah SAID, "purple, blue, orange, red, bubbles" and more...

Jesus spoke that day...and I heard Him in my baby girl, my miracle, my Lilah!

Such a good baby

2011-09-20T07:22:00.003-04:00

Last night I was looking at pictures of a few friends who had just had infants. I was thinking how cute they are, look at that smile, look at that hair, look at those eyes, then I came across a picture of one where the few day old infant was screaming with her mouth wide open.

It hit me....

Lilah never cried like that. If so, very rarely. She didn't wail when she wanted to be nursed. She didn't scream, fuss, or make a lot of sound....for anything.

I would tell people how in tuned I was to her and I just knew what she wanted and needed.

But last night I got to thinking (yes, I know, not always a great thing) maybe Lilah has always been pretty non-verbal. Maybe I was so in shock with learning of her disability, at birth, that I missed something that most would have had a red flag for. Maybe because her "delays" kept appearing that I wasn't sure what was " a sign" or what was "normal" for a child with a visual impairment. Obviously as time has gone on we have learned that Lilah doesn't Just have a visual impairment. What we thought was the "biggest" thing against her, may now just be the smallest thing. What I thought was so hard, so rough, so, "oh my goodness my child is blind" really is nothing compared to what she fights against and is learning to do daily.

No baby comes with a manual when they are born. No child has a set of instructions that you know how to take care of them. But, most infants follow a path or a curve of learning, growing, changing, etc.

I wish I would have pushed harder at 9 weeks old when I had the first genetics test. That first test just told us she had all 46 chromosomes. It never mentioned a deletion. It never mentioned that she would be delayed. I breathed a sigh of relief after that test. Over a year later I have a "deletion" with no answers. No one can tell me if Lilah's deletion on her 8th chromosome means she will have heart problems, spinal problems, speech delays, mental delays, vision problems. No one can "fill me in" on my baby.

Is this God's way of slowly helping me love and appreciate her before sticking me with a massive diagnosis that will rock my world? I mean, I thought learning my newborn was blind was hard enough. With each milestone that passes, I learn that my child is more "delayed, disabled, different." Those three words fill her forms, her "labels" by this world that give us no clue as to who she really is.

I take Lilah to multiple therapies so she can learn to communicate with me. I take her to multiple therapies so I can help her walk, pick up items, put them back in baskets, things we all take so for granted. I have the deepest, strongest, rip my heart out of my chest NEED to help my child.

I would give anything to hear her say, "Mommy, I love you" or even, "I am mad at you" or "No, Mommy." Anything...I want to know how to help her. But, I don't get my wish just yet...I must wait...much longer than others.

What I would give to know she is OK. To see her "path" in this life and know that all of this is just a stepping stone to something greater. What I wouldn't do to know that she will live a long and healthy life. But, I don't know those things. I don't know one day to the next.

Tomorrow we go back to Atlanta to see not only her eye Doctor (Greenberg) for the follow-up post op, but we are also taking Lilah to see one of the top Cardiologists at Scottish Rite to run tests to find out why Lilah had two separate strips of arrhythmia's during surgery. As my mind races and I can barely sleep, I wonder what is in store for Lilah.

What else will we find she has? Or more honestly, will we finally learn something about Lilah?

I wish that Savannah had better specialists. I wish that our town wasn't a "good ole boy" cover each other's rear ends. I wish that we had more resources, but we don't. So, off to Atlanta we go. Bright and early tomorrow morning.

One more time we must leave our older children in the care of others as we take Lilah for more tests, more doctors. One more time I am filled with guilt, fear, grief, questions, what ifs, etc.

Once again, I must lay all of my burdens at the feet of Jesus and tell Him how all of this hurts. Once more I will beg Him to give us good news and answers. Once more I must learn to trust Him even though I do not understand why. Once more I will try to stay as close to Him as possible.

Even in the midst of all of this uncertainty, one thing remains true..Lilah is such a gift. She is a precious child of God and she melts the hearts of those who meet her. She really is a good baby.

Guess I shouldn't say that any longer, seeing as she will be 3 soon...

She really is an amazing child!

Now, that's better...and much more appropriate.

Morning Lilah!

2011-09-19T20:49:00.004-04:00

I hear her in the monitor...singing.

She will "ahhh, oooo, ssssshhh" to herself.

Then, I walk into her room and say, "Good morning, Lilah!"
Then she sits up and sings to me in person.
Then she plays, "Where's Lilah?"
There she is....
Clicking and clucking ...

Happy as can be. I adore my girl...more than you could ever know.

A first for her...and me

2011-09-15T06:16:00.002-04:00

With all the changes and issues we had with insurance, medicaid, SSI, etc. We found out that Backus no longer allows co-treating for therapies. Or, maybe that the insurances will only pay the therapists if they do one-on-ones. Either way today marks a big day for Lilah...and me.

Today Lilah's therapies will be back to back hour long sessions. Today, Lilah will have OT, PT, ST in that order from 9-12.

Today I will walk her in , see her get started then I will leave...leave, man, that word...I don't do this often....

But, I felt God tell me that not only does she need me to give her this time to learn and not have me, the crutch, there, but also I need to focus this time on the older three and what we want to accomplish and learn with homeschooling.

I know she is in great hands. I know she will do fine and yes, I will be very close by incase of an emergency. And yes, I am very emotional about it all.

So, before I pour my heart out again, and get more criticism for my heart, I will hold my tears in and get going for my run so I can get everyone dressed and ready for the hour drive...oh the joys of morning traffic.

So, say a little prayer for her( and for me) as a new chapter of independence begins.

Blessing

2011-09-13T19:28:00.000-04:00

Please click HERE!

Lilah saying her name. This is HUGE!

2011-09-12T08:13:00.000-04:00

Listen to this:

Thank you, Jesus for this blessing!

Globally Delayed

2011-09-09T10:08:00.005-04:00

As I sit here, watching my almost 3 year old crawl around the house. I am overwhelmed with many emotions. (As I am on most days)

I often wonder if I am either not accepting of my child, or if I am still in such grief over her "diagnoses", or if because we still have NO answers on what she has...and each month her "delays" become bigger, more obvious, etc...I get sad. There it is. Truth. I get flat out sad because my child doesn't talk, walk, dance, jump, see like "normal" three year old children. Let's be honest. Let me lay it out for you what her delays are really like...

Lilah will be 3 on November 25. Most two year old children are running all over their homes, driving their Mommies crazy, pulling things out of cabinets, climbing up on counter tops, trying things and exploring, they say the darnedest things, run all over parking lots, etc. My baby doesn't do these things. Yes, she empties my cabinets for me and when she does..I LOVE it. It means her brain is working, moving, and growing. I see posts on Facebook of Mothers who complain about those toddler incidents and my heart hurts for them. Their child may be driving them up the wall with the crazy antics, but at least their child CAN do those things.

Lilah is at a 9-12 month level. Just typing that out is hard. Where her peers are doing all kinds of things, even the boy who was born the day after her is skate boarding, her cousin who is over a year younger started school, soccer, etc....my girl isn't. My girl is trying SO hard to learn those skills.

Read this part very close: I. AM. GRATEFUL for my child. I love her SO much. More than you could EVER fathom!

I just need to be honest that I am still grieving the "loss of the dream" that I had for my child. I had NO warning about Lilah's delays. Every test we had said, "normal fetus." What I hold in my arms is not "normal." I feel as if I am learning her and me each day. I feel like we had no prepare time. We learn about her each day. Each day we see what she can do, or cannot do. We see what she needs and how she needs it. My roller coaster of life is not a tad bumpy. No, I have STEEP highs and valley lows.

I cannot help but feel sad. I KNOW, yes, I do know...that Lilah does NOT know any different. She is SO happy. She loves and adores life. She brings SUCH joy to all who meet her. Her smile will melt your heart. Seriously. I am not just saying this as a biased Mommy. Lilah is amazing. Some days I wish "I" didn't know she was delayed. I wish I wasn't "aware" of it. The harder I push and fight for services and help for her, the more exhausted I become, the lonelier I feel. THIS. Life. Is. NOT. easy. I feel like I need a T-shirt that says, "Warning: Mom of a special needs child. Careful not to make me mad, I never take my gloves off and I will win this fight!" ok, maybe that was a little rough, but it is the truth. I live in a constant state of fighting. I get NO repsite time. The few times I get to get away (sing in the choir, photograph other families, etc) I come home to MORE to do.

Yes, I remind myself, blog my feelings for the world to see, etc. I believe the only way to healing is to get it out, work through the emotions and then complete the circle to gain perspective.

Wednesday morning an 11 year old boy was killed by a hit and run driver in my town. I cannot begin to understand their grief and pain. As I pray for them and ask God to comfort them in a time of such despair....I hold all 4 of my precious babies so close. I thank God for each one of them. I thank God for my friends, family, and SCC family who love us as we are, who reach out to me when I don't know how to ask for help, and allow me to cry. There will never be a "fix" for Lilah, so the most supportive thing for me right now is a person who loves me without judgement, and open ear that will not tell me "how" to feel.

Having a child with "global delays" means that everything is on a much slower level. If you "google it" you will see that globally delayed is a new term that replaces that AWFUL "R" word. So, when you use that 'R" word for something, change it in your brain. Does, "Am I globally delayed?" sound funny now that you realize how it affects someone that you know? love? pray for? think of?

Lilah is "Globally Delayed."

Please HELP!!

2011-09-03T06:10:00.007-04:00

During Lilah's surgery, ,which went very well, there was quite a concern on Lilah's irregular heartbeat. This has never happened to her before under anesthesia. We saw a cardiologist in 2009 who ran all the tests and they showed a slight PDA. But never have we heard anything about irregular heartbeats. The Anesthesiologist was very concerned because she said that it wasn't just one line of irregular beats, it was two. She brought us the strip and said Lilah needs to be seen by the specialists in Atlanta for her heart. I asked Dr. Greenberg if we should follow up with her cardiologist in Savannah and he said, "if one of my children had issues with their heart, I would want them to see the specialists here. There are the best almost world wide."

All of this time having Lilah I have said that I would fight and fight for her. I wanted to know everything there was to know about her, so I could help her live a better, more quality filled life. Now, there could be an issue that could affect the QUANTITY of her life. Help me. Please!

Here is the link to Lilah's genetic information. The deletion on her 8th chromosome.

Click Here or see above picture. Please share this link, picture, etc. I need answers.

I NEED to know. I need to know if her condition...whatever it is will affect how long she may survive. I need to know if there is a possibility that my child may not survive past a certain age.

I. Need. To. Know!

I cannot beg for help enough. I am prepared to drive all of the country, take our children, homeschool in the car, whatever until we know. I am so tired of the SLOWvannah answers. Sorry to be brutally honest, but I am. Someone PLEASE help me!

Just the idea of the fact that my girl may not be here long enough to see or do something makes me sick to my stomach. I am dying inside. So many of you think I am so strong, but I am not. Far, far, far from it.

I am crying as I type this. I am powerless over all of this. I cannot control how long my child may live, the quality of her life, the stares she gets, how delayed she is, how HARD this is.

When I lean on the truth in the Bible it says, " Trust in the Lord with all your heart." Proverbs 3:5

Right now I am having such a hard time trusting. God, please give me some answers. Equip me with the means and knowledge to help Lilah. I am so far in the valley of fear right now. I need physical help. Help to find answers, help to fight Medicaid, SSI, therapies, help to continue to do this. I am exhausted emotionally and physically. Is this my "new normal?" Will I forever be this exhausted?

Learning this week that Lilah's AFO braces were not correct for her feet, that I should have had them on her ALL the time, that we have no more visits per insurance for therapy, that she doesn't qualify for more because we make too much, learning that if we quit our jobs that our child would get MORE(ok USA, that is beyond messed up!) I am quite fed up!!

I need prayer. But, Lilah needs it more. I need help finding answers about Lilah. I need help with Medicaid, SSI, Katie Beckett, Easter seals, etc, etc, etc, etc. I am but ONE woman. I. Need. Help. Please!

I don't ask for help often. I suck at it. So, here I am...begging for it. Please help me find answers. Please first and foremost take her genetics information to everyone you know and pass it along. Please someone tell me what it is that she has. Please someone tell me what I need to know about my child. Please someone help me fill out form after form. I need someone who will be willing to watch my kids, the older three, without yelling and screaming and spanking them because they are tired and don't know how to control them like I do. (If you cannot watch my children, please do not offer it) Please someone love me, and us, in the valley. I need you there. I know I can be a lot to handle sometimes. Please. Don't. Walk. Away. From. Me. I need you. I may not say it, because I just don't know how somedays filled with such emotions. My time in Holland, although gorgeous, has been a never ending roller coaster with the largest dips. I cannot do this alone. I am drowning in it doing it by myself. Please help me.

Eye Surgery #1

2011-08-29T12:32:00.004-04:00

Thursday September 1, 2011, Lilah will have her very first EUA( exam under anesthesia) and her very first eye surgery. Click here to read about what will likely happen during her surgery.

Most of you that have read and followed this blog and her story from the beginning know that I have tried EVERYTHING in my power to prevent surgery. I am a stickler when it comes to patching and working her eyes. I believe in prayer. I believe that prayer changes things and/or changes the perspective on those things.

When I learned that Lilah would need surgery even after all the hours of patching I felt very guilty, like I hadn't done enough to help her. My friend Sam, an Optometrist, told me that I should be the opposite. She said I should feel proud because Lilah not only has vision but because of my "anal" patching, she now has binocular vision. Irene, Dr. Greenberg's nurse, spent over an hour on the phone with me describing the surgery, where, when, and why. She told me to expect better balance and walking, and that Lilah would have better vision because her eyes would be working together more often.

I needed to hear that. JUST like I needed to read the words my friend , Amy, wrote to me telling me that Lilah loves life. That she is so happy JUST the way she is. Amy is right. I have mourned and mourned and grieved the dream I had for Lilah. But Lilah IS happy. She is scared to walk and do things because she cannot see it like we do, but she is learning. I pray that this surgery gives her such confidence.
I am not scared of the surgery. I am not scared of what will happen. At least not today. Dr. Lee, Lilah's corneal specialist, has agreed to come in during the surgery and EUA to check out her eyes and corneas. THAT makes me VERY happy. We LOVE Dr. Lee. We haven't seen him in over a year and a half. We trust his judgment. His guidance had gotten her so far. Honestly, I put up with Dr. Greenberg because Dr. Lee recommended him. (Greenberg is NO where near as awesome as Dr. Lee but gratefully no where near as cruel and evil as Dr. D here in Savannah)

I took these pictures this morning as Lilah was eating breakfast. Here is a picture of what her eyes look like. You can see how clear her corneas look from where they began. But this image also shows how her right eye (the one on the left of your screen) turns in.
My girl is so happy. She smiles and giggles and dances often. She also fights me hard. She is one determined little girl. I know that this determination will take her far.

So, as we prepare to leave for Atlanta this Wednesday evening we wait to hear whether or not we will get a flight from Angel Flight. We have plans to drive up to Atlanta after Aaron gets off of work Wednesday evening. Lilah is scheduled to be at the hospital at 6am Thursday. Her EUA and surgery will begin at 7:15. The procedure should take about 2 hours. She should only be in recovery for a little while and then we will get back in the car and head home.

We are asking for prayers for safe travel, surgery to go very well, and for protection for our children here at home and for Dr. Lee and Dr. Greenberg.

I am more nervous about Lilah's EUA because she has not had her pressures checked in over a year. Nor have corneas have not been tested for thickness during this time. I am anxious to hear what they really see in her eyes. Are they clearer? Can they see both retinas? Optic nerves? How do the parts of her eyes look?

As I write these fear and anxieties I also know that we have so many more battles we must face: the upcoming MRI to determine tethering, possible spinal surgery if that is true, Lilah's many delays, continued fight for SSI and medicaid(oh the joys of THAT fun!)...

But, I also know... and I know this to my core: God is in control. Even in the midst of ALL of this uncertainty, God remains in control. I know HE loves Lilah VERY much. Lilah will be ok because HE is in control.

We bought the movie Soul Surfer a few weeks ago. We have watched it over and over. The more I watch it, the more I realize that God gave me Lilah so I would tell of HIS love to all people.

Lilah is no accident. Lilah's eyes are NOT a mistake, as Dr. Devarro so un-kindly told us at birth. Lilah IS perfect. Not by THIS world's standards, but what she does. WHO she is, what she SHINES tells of something FAR greater than this life. Lilah is here to spread the good news of Jesus Christ. Nothing will stop her. Nothing will stop me from telling her story and sharing of her miracles.

Jeremiah 29:11

Neurosurgeon Follow-up

2011-08-17T15:38:00.006-04:00

Yesterday Lilah had her 6 month follow-up with Dr. Thompson.

I went in to the appointment knowing that Lilah has made great improvements and she is steadily making progress in all areas.

Alex, Sammie, Eli and I walked with Lilah into the double doors. We made our way to the room and we waited for Dr. Thompson's nurse. She came in and measured Lilah's head. Then she told me that Lilah is growing on a perfect scale.

When Dr. Thompson came in he asked me how Lilah was doing. The entire time I spoke I watched as he really studies each move Lilah would make. He was really watching her, but especially paying very close attention to her legs with her AFO braces on.

Then he told me he wanted to repeat her MRI because cases like Lilah's that can be mistaken for tethered cords can either REALLY be tethered, form a cyst on the spine, or more. I swallowed the information and then he said that he wanted to add thoracic spine into the MRI also.

Almost immediately I told him that if they were going to do most of her spine in the MRI anyway, we might as well do the brain again, too.

He told me that we would need Dr. Moretz, the Neurologist, to sign off on that because insurance and medicaid get really sticky when you "add" more to the MRI. Seriously, I thought? Lilah would already be under anesthesia, why NOT get a picture of what all of her brain and spine are doing.

I told him those words and he agreed but explained that all the new "rules" make their jobs harder. (UGGGGGGG!)

Lilah's case is quite unique. ALL of her.

No one can tell me what her "chromosomal deletion" means. No one can explain what she sees, or doesn't see. No one can tell me why she does or doesn't do things.

I came home and immediately called Dr. Moretz office. I left a message, but no return call has been made. I also called Dr. Greenberg's office AGAIN, trying to schedule Lilah's surgery, as well.

I am about to share something that I NEED to get off my heart. I am including it here because I am filled with SO many emotions right now.

I don't have the answers about Lilah. I had EVERY test done when I was pregnant. EVERY one. ALL tests came back...NORMAL.

HA! Normal. Normal is NOT what I bore. Normal is NOT what I hold and snuggle. NORMAL is not what my life is. NORMAL is SO overrated!

Aaron has said from day one that he didn't really care about Lilah's vision as long as there was nothing wrong with her brain. The more time that passes. The more we learn about Lilah shows us that Lilah may have something "wrong" with her brain. Her fingers don't "look" like other children's fingers. Her feet don't turn the same way as other children. How she "behaves" isn't like other almost 3 year olds.

This morning I watched a friend's children for her so she could go to an appointment. I LOVE her kids. LOVE them. While I was playing with them, I was HIT by that truck again. The baby was doing things that my toddler doesn't. The baby.

My eyes just filled with tears.

And it hit me...yes, this is hard for me. I cannot lie. It is downright painful sometimes. What is the hardest part? Doing it all alone. I don't get a break from it all....to see a different perspective.

It seems as if EVERY day there is a new battle I must fight for Lilah. The walker, SSI(now they have removed it from her and are asking for $1100 back), street signs to protect her, therapists, surgeries, MRIs, medicaid/no medicaid, braces, PSI forms/no PSI, Drs/No Drs.

I don't get a break. I don't have a friend who I can call who really gets it. I have people who try to get it, but have NO idea.(I ADORE those people and need them desperately) I use this blog to vent my feelings to get it out before it bottles me up and I explode.

Before I go on...I LOVE Lilah. Don't be fooled thinking that I don't love her. I do...MORE than you know.

As Bethanny's youth director says in the movie "Soul Surfer" : Sometimes its hard to see the big picture when you are in the storm. (or something to that effect)

I know that God is using Lilah for HIS glory. I KNOW that she is changing the world. I know that she is changing me. I KNOW this!

But, I am IN this storm with her alone. I am doing the battle...alone. And most days, MOST days...I hit the bed and almost pass out from mental exhaustion. I must always be on my toes for her. NEVER stop. NEVER rest. NEVER take my gloves off. I am lonely.

There...I said it.

I am downright LONELY!

I need someone to talk to who will GET IT!( I love my family and friends, but most really have no clue and try as they may...they don't know...and I KNOW they want to help...and I am grateful for that. YES, I really am, but...) please understand...I am smart enough to see the big picture. I know how, why, when, etc...

I just don't want to be told, AGAIN, by someone who does NOT live this life...what perspective I should look at. I KNOW those perspectives. I just want someone I can VENT to...who will LOVE me...and not judge me for my thoughts sand emotions.

Today is not a great day. Tomorrow will be better...I am sure. Each and every day I will continue to fight and never give up for Lilah. I am determined to keep going....

But, I am tired. Mama Bear is weak today...and today I would like a little piece of normal, but normal is overrated and is not the life I lead. So, I will cry...and ask God to hold me close because HE is the only one who can really comfort me.

Jesus,

PLEASE come. Right now. PLEASE come. Hold my heart. Help me. I cannot do this without you. I need you. I am SO weak today. I am tired. I am lonely. I am sad. I am at a place that only YOU understand. I love you, Lord...even in the midst of not understanding.

Please come and hold my heart.

Perspective!

2011-08-13T15:21:00.002-04:00

I am in a much better place than I was a few days ago. I am learning to process these emotions and thoughts much more quickly. What I am learning to do the most is set my eyes on Jesus and keep them there.

I took my eyes off of Him and His plan, gave Satan a footstool, and WAM...I allowed my feelings to overtake my knowledge of truth.

I may not agree with Jesus and His ways, but I know that He makes ALL things work together for my good!

Someday I will share my entire testimony here for you all. Now, is not really the time.

Having said that, the things that have occurred in my life are all pieces of my puzzle. Some are sharp and jagged. Some are smooth. Some are bumpy, but they are all fitting into a puzzle that is the story of my life that has led me to a deeper relationship with Jesus.

Jesus is my rock, savior, fortress, and the ONLY one who can comfort me in the time of pain.

I can look at the bigger perspective during the storm and see that Jesus is working, but I am SO human and I wail and cry and lash out. I don't understand why He does these things. Why He allows these events to occur.

BUT...

What I do know is THIS...

My God, MY Jesus, MY friend, MY Father....LOVES me.

He loves LILAH...much, MUCH more.

In those times of sadness I have a hard time wrapping my head around the truth, but once I immerse myself in the word and PRAISE music...I feel HIM hold me.

The tears just fall down my face. I allow HIM to take the hurt, the pain, the questions, the fear, the doubt, the anger, the pride, envy...ALL of it...

And when I do...

I. AM. AT. PEACE!

So, here I go...

To serve and worship my Lord and be surrounded by fellow believers who will allow me to cry, laugh, and be me...

and they LOVE my girl...and my family and they help me to praise...

even in the midst of all the storms.

Surgery awaits

2011-08-11T06:43:00.002-04:00

From the time of Lilah's diagnosis I have been dodging surgery like a runaway train. I knew it was bound to catch up with us....but the fear of surgery, putting your child to sleep, allow someone to cut on them, etc, etc...looms overhead daily.

As hard as I tried to fight it, pray against it, do everything in my power, and BEG God to help me to trust Him, I lost the battle. Or THAT is how it feels right now in these very raw moments.

Angel Flight was unable to get our mission filled, so we planned the drive out last minute. I made sure my friend Michele was ok with watching the older three for 13 plus hours, I filled the car with gas and had the oil changed.

Yesterday morning as I came home from, my run, Aaron met me outside and told me he had made an "Executive Decision and that we were taking the older three with us and would go to the Aquarium for a science field trip after." Happily shocked, I called Michele and hurried to get all the last minute details in order.

As we drove, I prayed and prayed. There were moments when we saw the clocking ticking and we were farther away then we needed to be. I increased my speed and carefully drove through Atlanta traffic so we could make it to the appointment on time.

Yesterday Lilah saw Dr. Greenberg in Atlanta again. We hadn't seen him since February. Irene, his nurse, came in first asking this question and that, watching Lilah's eyes closely as she wrote down information for Dr. Greenberg. Next she told us that it has been a year since her eyes were dilated. So, we held Lilah tight as we fought to get the drops in her eyes. Man, my little fighter puts up one STRONG battle not to have her eyes messed with.

We were sent back to the waiting room to allow her eyes time to dilate properly. Then about 30 minutes later we all went back into the examine room and waited for Greenberg to enter.

When he came in he had the case with him. He talked to us about her vision, tried many tests with her, talked about how her left eye looks clearer. I told him how I believe that the patching is working. He asked me how many hours and I said 5 hours a day like you said. He said, "No, I told you to work up to that." Well, I got there, and stayed there to work her eye.

He attempted so many things with Lilah, and some he got, but most tests...she resisted harder than I had ever seen before.

I knew in my gut what was coming.

Then he did one last test and tried to get Lilah's right eye to look to the right while her head stayed facing forward. Her right eye...only goes so far. Due to the way it is turned in, she cannot see far right. Her left eye does all the work past a certain point. He did notice that looking dead on Lilah looked him right in the face with her right eye.

Then he wrote down numbers and mumbled things about 35 and 40 and asked if Lilah had any other medical conditions. I said, "well, she has a deletion on her 8th chromosome, but no one, not even Flannery in Augusta can tell me what that means." He said, "no, I mean heart or lung issues."

And I knew.....he was prepping her chart for surgery.

He told us that no matter what happens Lilah's right eye will never turn to the right fully and will always turn inward, toward her nose, without surgery and re-alignment. I said, "But, I have been patching her daily for 5 hours to prevent that." He said, "The patching doesn't do anything for her muscle. It just makes the eye work and strengthens it so the brain won't cut it off." And I said, "So, even after she has the muscle repair surgery, I will still need to patch her?" YES, was the answer.

Aaron and I looked at each other. We kind of felt like patching and the benefits were never described correctly for us. And I felt like I had failed. I know that THAT is not the right way to feel, but I feel it.

Dr. Greenberg explained that this surgery is so easy. It is outpatient and only takes 25 minutes. He does them all the time. He starts on children as early as 4 months of age.

But, this is Lilah. This is MY girl.

So, I asked more questions. I could tell he was getting annoyed, but I told him..."THIS is new to me," I said. " I have heard good things and bad things about the surgery. Tell me what the benefits are to doing it now."

He said that no matter when we do it, now or at 5, her eye will still turn in like that. Again, I asked about patching. He said that the patching allows the brain to use the right eye.

So, we made no concrete date of surgery yet, but Greenberg wrote in his chart that she needed it.

And here we are, in the waiting, praying, what do we do, when is best, is this the right choice for her, what if they have to do more then one surgery to correct the muscle(which is very possible), what about work days, vacation days, do we wait until the next visit only to turn around and come right back up to do it days later, where do we stay in Atlanta prior to surgery, what about the older three? All questions looming in my mind and ones Aaron and I discussed so many times.

And here we are...not knowing what to do. When to do it. How to do it.

I know, yes...I can say the words and know them that I have done all I can for her, BUT...

I am Lilah's Mama. I want to protect her from any and all pain and keep her safe. There is NOTHING wrong with my emotions. And I MUST feel each and every one of them. I cannot cover them.

I will be asking people I trust what their opinions and thoughts are. I will be gathering as much information needed...and I will do my best not to blame or question myself for what I have or have not done.

I will ask Jesus every minute of everyday to help me to trust Him.

And then Aaron and I will figure out when it is best to make the journey back to Atlanta for Lilah to have her surgery.

We appreciate all of your thoughts, prayers, love, and support. We hope you will love us through all of this. We hope you will understand that we are scared, nervous, new to this, and we are trying to do the best thing for our child. We may not want to talk about it. We may just want to do anything other than talk about it. OR we may want to cry and ask WHY. What we need is support. We need you to be there for us. Hold us as we make he right choice for our child. Some of you may be reading this thinking, "this is a nothing surgery. why are they so dramatic?" Well, to you it may be nothing, but to us...this is our child and it is big. This is our mountain and path to climb with Lilah...as well as all the delays she has. We NEED you in our lives. We need you not to pull away from us. We need you to love us, listen, and be there, even if you have NO idea what to say. Sometimes your presence is the BEST present.

Thank you for never giving up on us. Thank you for loving us. Thank you for understanding and trying to help.

Thank you for CONTINUING to pray for Lilah...and our family. THAT, above all, is what we desire the most.

Lilah dancing to Esterlyn's Freedom

2011-08-09T19:42:00.001-04:00

Even in the pre-Atlanta fear and anxiety(we drive to see her ophthalmologist tomorrow) , we are still praising Jesus for HIS goodness. When you watch this you will not only see Lilah DANCE, but you will smile...at least I did!

Lilah's new sounds and signs. Thank you God!

2011-08-08T19:54:00.000-04:00

I cannot begin to explain how GREAT this feels to hear her voice and see new signs as she learns to communicate with me. HUGE praises!!

Thank you Jesus!

Anointing

2011-08-07T13:13:00.005-04:00

Yesterday afternoon as we walked into church, I watched as many of our fellow SCC family members looked, smiled, and commented as Lilah happily walked in pushing her walker. There were times when she got afraid. Times when she was obviously scared because the terrain changed, she couldn't see the curb, but she did it.

As she turned the corner into the room, a pastor and two elders were waiting on us. They were all so shocked at her improvements and how FAR she has come.

As I told the story of Lilah walking into the grocery store and how she cried out of fear, but was immediately calmed by learning the bananas, bottles, and more awaited her at her level and how its obvious her depth perception is way off, if almost non-existent...I noticed their faces.

The same pastor and two of the elders were the same ones who anointed her originally in December 2008.

Mickey Boutwell said he was just amazed that I was even discussing "depth perception." He said he knows that God can heal and do some great things, but when he first anointed her he was not as faithful because vision is just one of those things you don't see God do that often.

I told Mickey, Dennis, and Carlton how the Doctors told me "MAYBE" one eye. But, I wouldn't take NO for an answer, nor would I stop believing that God could heal her...and He is.

I told them that I KNOW the patching is working because originally it was 1 hour/day, then 3, now 5hrs/day. I told them as they began the anointing that we were going back to Atlanta Wednesday for her check-up with her ophthalmologist. I told them that we are awaiting news on whether or not Angel Flight will take us or we will make the 13 hr round-trip drive. I asked for prayers of continued clarity, straight eyes, safe travels, continued improvements....because I believe. I know, that even though I wasn't the Mom I am today and was MAD at God when she was first diagnosed, I am now so much more aware of HIS blessing.

Delilah Hope Sharp was sent to me to open my eyes, and make me SEE His glory. I have a MUCH closer walk with Him through the valleys I have walked though.

I remember feeling that God had "DONE" this to me and my child. But then it changed to being ANGRY with Him for allowing her to be born this way. WHY her? I would ask...daily, hourly...every minute. I was SO hurt. I just couldn't understand it. The pain I was in...wailing out of shear misery.

WHY didn't I TRUST Him?

Why didn't I believe HIS promises?

Why didn't I understand that HIS plan was greater than my own?

Because I am human and I am her Mom, BUT...

God sent Lilah here to me, to my family, to all of us, to grow us, change us, lead us....but Jesus HAD to start with me. He had to allow me to go to valleys...the bottom of the barrel, so the ONLY place I had to turn was UP. Have you heard the song, "Strong Enough" by Matthew West?

"YOU must, YOU must think I'm strong. Forgive me if I'm wrong, but this looks like more than I can do...on my own....

I know I'm not strong enough to be everything that I'm suppose to be. I give up....

But maybe THAT'S the POINT...

to reach the point of giving up, when I'm finally at rock bottom, that's when I start looking up and reaching out"

I was NEVER meant to do this on my own. I was NEVER meant to do these things alone.....

I had to learn that Jesus IS my rock. HE is my fortress. HE is my healer, deliverer. HE has down GREAT works in Lilah's life, but HE started with her Mama.

I have asked God to forgive me for being so angry and mad at Him...and I know He has.

I have found Freedom. PURE Freedom in HIM....

"Freedom" by Esterlyn is one of my new favorite songs.

"Freedom IS here.

I'm not shaking. I'm not letting Go.

I will not fear. I will NOT hide your LOVE

Everything comes ALIVE in my life when we lift you HIGHER

Freedom is HERE"

I know I will have days when Satan will try with the same old lies, he will fight with everything he has to stop me from believing the TRUTH. I will pray against those temptations. I will pray to stand FIRM in HIS truth.

Jesus has the plan for my life, for Lilah's, for my family.

I believe Jesus can and will continue to do mighty works in Lilah's life. He has some great things planned. We will hit valleys again, but no matter what we will believe in HIS truth and HIS promises.

Jeremiah 29:11 "For I know the plans I have for you", declares the Lord. "plans to prosper you, not to harm you, plans to give you hope and a future"

I may not ever REALLY understand WHY He has allowed these things to occur in my life, but I DO know this....

I am closer in my relationship with Christ TODAY than I have ever been.

I pray every single day for Jesus to help me to TRUST Him.

As we head back to Atlanta on Wednesday, I pray that I continue to trust in Him. And I pray that He will continue HIS miracle in her.

I will continue to share HIS goodness and be obedient for THAT is why I am here. I am here to serve our GREAT God...and tell of how HE has given me FREEDOM in HIS name.

Facing Fears

2011-08-04T06:54:00.003-04:00

My brain has been reeling with so much activity lately. The realization that Lilah goes back to see Greenberg on Wednesday makes my heart palpitate and my palms sweaty. Why?
Yes, I know I am her Mama. I know that all I want is what we ALL want for our children... To live happy. But I come with such mixed emotions. I have been doing everything I can in my power...to prevent Lilah from having any eye surgeries. I DO believe in modern medicine and what amazing things can happen, but I also believe that mistakes can happen and with the eyes....that may be irreversible. After much research, and talking to patients, some wish they had neverhadtheir eye surgeries... Or the number they did.
Then I get to the..." Katie, why is this your top concern?" like I am telling myself, "hello, Lilah has bigger issues at hand right now then just her visison."
Then I remind myself of how far she has come, all the amazing things she is doing(watch the videos from the 2 previous posts), how WITH her patch on she can eat, navigate her walker, find objects on the ground when she is crawling, and more.

I do not like this anxiety and fear. I don't like it at all.

I am praying. I have learned to be brutally honest with God. I mean, why not? He already knows. He just wants me to surrender it all to Him so I can allow Him to take control.

And there it is..."control."

I pray so many times...a day...for God to help me to trust Him. I need Him. I cannot do any of this alone. I need His help. I need His love. I need His guidance. I desire His wisdom. I try so hard to find Him each moment of each day. I try to breathe out this worlds lies and breathe in His truth.

But, I am human. I am Lilah's Mama...and I want to fix it...and I can't.

And that makes me scared....a lot.

I don't have a magic pill, or pump, or shot that makes Lilah "normal." I can't pinpoint her diagnoses and give her like insulin does a diabetic patient to help her see, walk, talk,etc.

Somedays I would do ANYTHING to have something like that. To stop the stares and the questions and the comments. And then I remember that if I were to remove Lilah's disability then she would be...different. I love her JUST as she is. Do I desire from the depths of my soul for her to not have to fight as hard...YES. But I also have grown to see that God has placed this amazing gift in my presence for me to fight tooth and nail for her....and learn my own worth in the process.

I am asking for prayers of peace, trust, and wisdom. I am also asking for continued prayers for Likah's eyes...straight, clear eyes. I amassing for continued progress in her gross motor, fine motor, and her speech.

My hope is that someday I can lead Lilah on a tether and she can run with me. I imagine this on my runs when my legs hurt and I want to stop. I think of her and see her tears falling down her face due to FEAR of the unknown and I push and I push myself. That amazing little girl gives me more motivation, more strength, and more fight.

Watching her TRY makes me tell my legs to not stop. Watchig her TRY to form her lips so she can communicate with me makes me attempt things I never would have.

But then, I get to my "finish line" and weep...I want her to do these things with me. So, my prayer and petition to the Lord is that He will someday grant me that.

This year we are doing something new. At the request of my children, I am homeschooling this year. This comes with a massive amount of "can I do this?" but with God on my side and fight in my heart... I will do it.. One day at a time. I will make mistakes. I will learn as I go, but I will never know if this is what I am meant to do, and what God has planned for me, if I don't at least try it.

Last night I tried something I haven't done in years...years. I mean, I do it daily, but haven't done it in a group since....high school. I have had it on my heart for years to go back to singing in the choir, but was so full of fear. Will I mess up? Will I sing like crap? Will I hit a wrong note? Will they like me? Then I stopped myself... Or truth, God did...and with the encouragement from Aaron, I realized I LOVE music. I love to sing. I feel His presence the MOST through song...so I went. And I loved it...and yes, as many of you know, I cried during 2 of the songs...and here I go again...facing fears. I will never sing like those angels on this stage, but at least I am worshipping God how I feel connected the most.

And that is just it...facing those fears...one step, one song, one note, one race, one pound at a time...
With God we can all do it...and that is why Hesent Lilah to me....

So I could see it, feeing, do it, live it...and learn to give it all to Him

Surrender.

Lilah's vocal strength

2011-08-01T09:31:00.001-04:00

Lilah is such a SPONGE right now. She is not only walking like a champ(see last post!) but watch this and see her vocal improvements. (Pay no attention to the Mama Bear)

God is good!

Just a WALKING!

2011-07-30T21:03:00.001-04:00

On the way in to church tonight Lilah CRIED and screamed and yelled as she made her FIRST walk into the building. It was one of the hardest 15 minutes of my life. When she made it to the counter at SCC I picked her up, praised her and told her she did it...with tears streaming down my face. I felt horrible.
Should I have pushed her? Was I a bad Mother for making her walk all that way? These thoughts went through my head the entire time at church.

When we made it into service, I was so full of emotion I just wept with the music...

" You make, all things, work together for my good"

And during communion I ave it all to HIM. I told Him how hard this was. I told Him my guilt, pain, shame, remorse, FEARS, and I begged HIM to help me to trust Him.

Then, after worship.... my prayers...were answered....WATCH THIS:

PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!

She is REALLY getting it

2011-07-19T19:20:00.002-04:00

Today was a day FULL of packing and last minute cleaning and preparing for our VERY first family trip to see my sister, Allison, in New England. The last time we went to see her Alex was 2, Sammie was a baby and Eli and Lilah were not even born yet. Over 6 years!

Today was one of those days SO full...a 3.2 mile run, editing, 2 therapies for Lilah, packing, cleaning, making sure all loose ends are tied up.

Joey, Lilah's GA Pines representative, made SEVERAL comments about how impressed she was that Lilah was REALLY communicating with me. She would sign one of two words, then try to make a sound for the third, or do several combinations of that. I guess being in it, I don't see the improvements as fast as the therapists who see her once or twice a month.

Tonight after a MUCH needed pool break, I was rocking Lilah and reading her a book...then I did my "normal." I prayed with and FOR her and then began to sing the song I made for her when she was just weeks old...

Nothing fancy about this song....nothing rhyming or perfect...just my heart about her...to her(each one of my children has a song that I made up for them and sing nightly before they go to bed...something I started when Alex was in my belly and continued with all of them)

So, I was singing...(set to the lullaby)

"Lilah Bird, Lilah Bird,

how I love my Lilah Bird

My sweet angel

sent from Heaven to me

Lilah Bird, Lilah Bird

you are my girl,

Lilah Bird, Lilah Bird,

You are my world"

So, when I got to the part of "My Sweet Angel" Lilah said.."swee"

No joke....out of the blue, I have NEVER heard those sounds..together...and she did it as I was singing her song....

To me, THAT was God speaking to me...

"Katie, I am here. I am listening. I see how hard you work. I see your tears. I see your pain. I am holding those tears and I am using them. Here is my gift to you. Your daughter singing along with you"

And at THAT moment...I praised HIM...

Our God, is an AWESOME God!

I have been SO blessed!

2011-07-18T06:29:00.028-04:00

The Incredible Christine Hall took our family photographs a few months ago. I asked her permission to share some of my favorite images from our session with her.

ALL I wanted was a family picture with 6 faces AND 12 eyes looking at the camera. THIS is not the easiest thing to do with MY family and being behind the lens I KNEW what she was in for with us. I didn't bargain or beg my kids. I didn't stress them out or freak out about their smiles, etc... I told them that Ms. Christine was going to take a few family pictures then we were just going to have FUN...and THAT is what we did. Christine didn't JUST get THE family portrait I have DREAMED of..no, no, no...what she captured of my family was pure perfection!

Do you see that? Not JUST 6 faces and 12 eyes, but SMILES...and at our FAVORITE place...the beach. I see and feel God's presence more at the beach then almost anywhere else. I am not sure if it was the early mornings my Mom would wake me up and we would watch the sunrise when my family would stay at the beach...and I mean the ENTIRE family...aunts, uncles, cousins, etc.

I am not sure if it is because I remember more laughter and peace there...I don't know, but the beach is the place I feel Jesus speak to me.

During our session with Christine, we had about a 5 minute STORM come through, we hid in the lifeguard stand and let it pass, and then the temperature dropped about 15 degrees...it was MAGNIFICENT!!

When the storm passed, we had the most beautiful clouds as our backdrop and I was determined to just play with my kids and be...US!

The portrait below is one of my favorites of ALL time...me and my mini-me!

I have struggled for YEARS with self-doubt, low self-esteem, and insecurity. I normally dislike my portrait taken, I am MUCH more comfortable behind the camera than in front of it. My friends have seen these images, and several have dubbed this one "strength." I don't see that in myself. I have a very hard time with that. But, daily I pray and ask the Lord to show me what HE really thinks of me. My friends have told me that I am so strong and they don't know how I have done all that I have in the past 4.5 years. See, its not me...its Jesus. My road and my path have NOT been easy. I did a bible study that changed my life. Learning that many of my wounds began VERY early... I was about 7 years old, there have been things that have happened that have been constant battles, but God has used those pains and HE is using me for HIS purpose. I am sharing these two images because I am trying to see myself as HE does...and as my friends do.
Christine did an amazing job of not only capturing my MAMA BEAR heart and soul, she made me look...beautiful. Thanks Christine!
The next image is my FAVORITE...look at the contrast between Lilah's eyes and mine!! Look at those blue eyes!

I cannot even begin to thank Christine Hall for what she has done for me and my family. I cannot begin to thank her for not just capturing memories, but giving this Mama something I will cherish for my entire life.

Many people mistake custom photography as just "click the camera." THAT is very wrong thinking. Having a photographer that you trust and love to give you memories is truly an INVESTMENT.

Christine has given my family something that I could NEVER put a price tag on. Her work is truly phenomenal! Her art, her passion, her LOVE shines through in every image. How she LOVED my children, my family...and me.

The BEST part of Christine photographing my family is that she and I now have this budding friendship that is such a blessing to me. You just never know what God is going to do, or what He will do, but when you let go and allow Him to take control.... the most gorgeous things play out.

Christine,

THANK YOU!

From the bottom of my heart. What you have done..... Your vision, your heart, your work, your eye, your passion...your LOVE for my family.... I cannot put into words what you and what you have done mean to me. My heart is SO full. I not only have the most beautiful portraits ever, I have memories, beautiful gifts that fill my home and bring smiles to not only my face, but my heart!

MANY, MANY THANKS!

Katie

Eyes open wide

2011-07-17T07:42:00.004-04:00

(HUGE victory for Mama Bear and Lilah, 2 of these signs are on my road near my house)

Last night at church I was talking to Stephanie.( Remember, Stephanie is one of the volunteers that works in Lilah's room) We were talking about Lilah and she began asking me some questions about Lilah's condition. Then she spoke and it was as if God gave me the GREATEST peace.

Stephanie asked me : "Does Lilah not walk yet because of the fear or something else?"

I went on to tell her how 2 of Lilah's previous PTs (physical therapists) kept pushing me and telling me that there MUST be something more than just her visual impairment that makes Lilah like she is. So, we did ALL of these tests, doctors, specialists, and all have come up with NO conclusion and NO answers. Then I told her how Lilah's O&M specialist says Lilah is right on track for visually impaired children. I told Stephanie how there are SO many schools of thought.

And THIS is what she said....

She told me how she believes it is FEAR that prevents Lilah from walking.(EXACTLY what I have been saying ALL along, but no therapist wants to listen) Stephanie told me what she sees and cannot see with her Nystagmus and how she cannot even see the ground. She told me that she is fearful when she goes places because she cannot see what she is walking on...and that "this is the reason I always wear flip flops, even in the snow, so I can feel the ground." She went on to tell me how bright lights will make her almost blind...JUST like Lilah. So much of what she said was like getting the answers I have been seeking for SO long.

Here she is, this beautiful Mother of two, who is legally blind from congenital Nystagmus and she is LOVING on my child...and now me.

I spoke with Stephanie's husband for a few minutes last night. Her husband told me that most people don't take her serious because they know nothing of the condition and they think she is drunk(due to her eyes moving) so they ignore her and don't listen to her or look at her when she speaks. He went on to say how people will think she is lying because she can function so well, but when they look at her, they don't really listen.

I had such an eye opening experience last night.

My 5 minute conversation with Stephanie taught me more about my child than 2 years of therapists. Stephanie HAVING a visual impairment, explaining to me...lovingly how she sees, and listening to me was a BLESSING!

One of the ways I can help Lilah the most is to educate myself and fight and push for her. I have been begging God for someone to talk to...and after over two and a half years of begging, God has delivered a person to me.

God allowed me to be in the valley, alone, so I would look up to Him, ONLY, for my confidence, strength, and HOPE. Once I learned to lean on HIM first, then HE opened the door for me to hear lessons from others who have walked this path.

Again, I didn't get what I wanted, when I wanted, but I received what I needed when the Lord knew I would be open and ready to hear it.

The picture above is of one of the TWO signs that were JUST placed on my street. About 2 months ago, if that, I went to Public Works here locally and spoke with a VERY Godly man about Lilah. With her on my hip, we were told that they would place signs on my street. I didn't expect them SO soon...Two days ago,we got VICTORY!

THANK YOU JESUS!!

He heard me...

2011-07-11T09:11:00.001-04:00

Saturday night at church when we were taking communion, and I was talking with God, I got very emotional and really just laid it all down for Him to take. I was so brutally honest with God. I told Him how weak and sad I was that Lilah wasn't talking to me. I just wept in pain. I cried and cried and asked Him why. I told Him how mad and angry I have been with Him. I was so honest. I just poured my heart and my soul to Him. I sat with my head in my lap, wailing in pain. I cried so hard.
I couldn't control it. It was as if I knew I was safe in His arms, in His house, and I could tell Him how HURT I am.
I told Him how I just didn't understand why He has allowed SO much to happen to me in the last 4.5 years. Why He has allowed me to endure such pain and heartache and then He gave me Lilah. I told Him I just didn't understand what I had done to have such constant trials. (I joke with a friend that I sometimes feel like Job)
I laid it all down at His feet. I pleaded and pleaded with Him to hear me. I begged Him to allow me to hear her voice, to talk to her, and her to talk to me. I shared with Him my most deepest desires and wants. I asked Him to take the pain and hurt...and allow me to experience His grace, mercy, and peace. I also asked Him to help me to trust Him because many times I struggle with why He allows such things.

Then last night while we were at my Mom's house, I asked Lilah if she wanted a banana. Lately, she has begun saying, "na na" but last night she said it..."Ba Na Na."

God spoke through Lilah. He answered me. He heard my cries, and even if to some it was the most simple, small, little sound, to me.....it was huge. It was an answer. Not the answer I want and hope for, but it is not on my time, nor on my schedule. I must remember that. The way that the Lord has been working in our family...would NEVER have been on my plan....for those that know me personally and know the pain I have experienced...you know I would NEVER have dreamed or desired it, but God has used each and every painful moment and experience and He has used it for His good.

And this is why I beg Him to help me to trust Him.

And here is a video from this morning of her new sounds...

He is answering me....on His time, but He is listening and He IS answering me

The other night....

2011-07-09T06:33:00.004-04:00

Eli asked, "Mommy, when will Lilah be a kid?"

I said,"she IS a kid."

He said, "when will she walk, and talk, and run?"

I said, with a heart full of emotions, "that's why she is in therapies."

With a sad look and disappointed tone, he said, " I know."

So, before I finish the rest of the story and what I said to Eli, I wanted to share a few things.

This life is hard on all of us.

Everyday I wonder if I am spending the right amount of time with the older three, helping them become all they can be and live happily too. Then I wonder how this affects them. As you have just read, it does. Eli, and his older sisters, desire from the deepest places that Lilah will play with them, talk to them, and be with them. They love her so much. They also desire normalcy, which I do my best to provide.

And this is the reason I started this blog. It is a place for my emotions to be released. It is a place for me to tell the truth and share the good days and the bad...and the "how do I handle this." I share it all because I know I am not alone in my emotions. Many of you may not get me, and that is ok. I am not looking for feedback or comments about how I should think, feel, or act. This blog is like my diary, but I am airing my transparency for others who may need it, or for those who have walked on this path and can help, AND for those who have no idea. For those that live life without the stares, the questions, and the hurt. Maybe me sharing will help them look at their own children and stop complaining about how wild they are, or how naughty they are, because their child is acting out or talking back.

I got an email this morning from a friend of one of my sisters who started reading my blog. She has a child with delays, seizures, and low tone. She thanked me for my blog. She thanked me for writing what she feels so often and cannot wrap her head around. She also asked me how do I handle the guilt of one child doing so much, and another will never do those things.
"I'm not the best at putting my thoughts into words, but reading your blog has been so wonderful!!! I have so many swirling emotions (good & bad) & it is hard for anyone to help me get through the bad, but reading your words is like reading my own thoughts sometimes. I have an almost 2 year old son & have struggled with the happiness & excitement I feel of all his milestones mixed with the realization that Taylor will never do those things. How does anyone ever balance that guilt!? Anyway, just wanted you to know that you help to brighten my world. Lilah is BEAUTIFUL!!" THANK YOU, J, for your comment. THANK YOU!!!!

And that is why I share my emotions. Not for people to try to comfort me. I share it because I am real. I do not wear a mask and live behind the," all is good" mentality. I share it because there are absolutely AMAZING days and their are also very real, very bottom-of-the- pit days.
And only those that live in Holland really get it. And for those like me with one foot in Holland, and another in Italy...it is hard too.

You see your children progress and improve at rapid speeds...and you watch your child fight with all of her will to accomplish tasks that are taken so for granted....eating, spoon feeding, walking, talking.

What I wouldn't give to hear Lilah, at 2.5, talk to me and argue with me like most 2 year olds do. What I wouldn't give to hear her voice. What I wouldn't give to remove her fear and watch her walk without assistance. What I wouldn't give to remove the stares and glares from her life.

But, I cannot remove them....

I must "cowboy up" and keep being MAMA BEAR and fight for her....and for me...and for my family.

I told Eli that I know he really wants her to be "normal." I told him that I know he wants her to play. I told him that I know he wants to see his sister succeed. Eli is Lilah's protector. But, he is also a kid who sees and recognizes the "differences" even when we tell him frequently how she was made this way because God wanted her to be like this. That she is perfect. Eli knows.

This life doesn't just affect me, the Mommy, the caretaker. It affects my marriage, my home, my children, day to day....all of it.

I am not complaining. Some may think that I am...and that is ok. Other people's opinions of me are NoNe of my business.

I am telling it like it is....

When Eli asked me that....it broke my heart. I told him what a good parent should say, and I explained all the emotions, and we talked many times about it...when the therapists came, when we went to Backus, etc. I explained that this is why she goes here, works hard, does this, etc. BUT, inside I looked up and asked God Why again. Why her? Why can't she play with her siblings like other kids can? Why can't she fight with them? Play, run, jump, dance, sing, talk, walk?

Then I heard my own voice coming out of my mouth in reply to Eli, " I know. She'll get there buddy."

And I pray she will....

4th of July 2011

2011-07-05T14:09:00.014-04:00

Our FUN in pictures!

We will start with the little beauty herself..

Grandma(Aaron's Mom, Geri) and Lilah watching Daddy and Uncle Mike blow "stuff" up!
My sister, Laurie, and her husband, Mike.
Laurie and Sammie
My Mom and Bill
The BEAUTIFUL patriotic bows my friend, Michele, made. (If you are on Facebook fan her at MicMacs Bows! Custom Bows)
Grandma and Lilah blowing bubbles
GaGa(my Mom) having fun with the bubbles she brought for the kids.
The kids having bubble races..
One of my favorite images from the day : )
Sammie and her sparkler..
And here are the pictures I took of the fireworks that Aaron and Mike shot off...

Hope everyone had a VERY safe and happy 4th of July. We sure did!

Just like the older three..

2011-07-05T13:49:00.003-04:00

JUST like her sisters and brother, Lilah is trying us at nap time and bedtime. She will get mad, cry, refuse to rest, and then it happens. She will slide on her belly, feet first, turn around and come out of her room crawling with tears in her eyes. And JUST like her sisters and her brother...Mommy will pick her up, kiss her and take her back to her bed.

No special treatment here. No, "oh, but she can't see well" or "poor Lilah, she hasn't learned to walk or talk yet."

Nope.

Lilah is treated JUST like the older three...
and she is JUST as stubborn....
and I am GRATEFUL for these "normal" moments that show me she is human and PERFECTLY made by God himself....

and I am one VERY happy Mommy!

Unfolding

2011-07-03T07:02:00.005-04:00

Last night at church, something beautiful happened. You know the type of thing where you are so glad you were present to witness God working? Do you know what I mean? How, if you had been too busy, you would have missed the absolute glorious gift the Lord prepared JUST for you?

Well, this post will not have pictures, so to speak, but it will have a story for you to read. If you will be patient...what I am about to share with you is one of the most beautiful things. At least to me. And isn't that it.... I witnessed the gift He gave to me....

On Saturday nights at SCC, Aaron and I volunteer with 3 & 4 year old children. We have served in that room together for over a year. Last night a parent came up to the counter, and immediately I saw them. I saw Stephanie's beautiful blue eyes move, like Lilah's. She told me that she volunteers in this room after me and really wants to change rooms because her daughter got too upset with her in the room. So, I walked her to Maureen and we talked about what room would be best for her. Then she said it, "I was thinking the 2 year old room." My heart danced.

I heard God speak, "talk to her." so... I did. I said, " oh, you will get to be in the room with my daughter, she is legally blind." Then Stephanie said, "Lilah? My husband volunteers with her and was telling me all about her. I want to be in there with her. I am legally blind, too. I have congenital Nystagmus." I immediately reached out and hugged her. I told her how I loved that she would be in there with her. I told her that I noticed her eyes, and I think they are beautiful.

Here was this beautiful Mother of two, happily wanting to serve the Lord, AND she was going to volunteer in the room with my girl.

My classroom in across the hall from Lilah's. So, I can watch Lilah through the window and see how she is doing while serve.

Last night I saw Stephanie and Lilah talking , playing, coloring, and God was working in them both....and in me. I shared with many of the volunteers what had happened. Many who have known me for years. Many who have watched me on this path, prayed for AND with me. Many who have shed tears right along with me.

I realized last night that the more I study and stay close to God, the more I am able to see these gifts. I am able to witness His story...unfolding one beautiful word after another.

Last night Jesus showed me how He had planned all of this, but I had to wait and be patient. He showed me that if I allow Him to work in me, through me, and Lilah, He would reveal some magnificent wonders for us.

I am so glad I was present last night. I was open, listening, and waiting for God to show up. I pray and ask Him daily to show His face to me.

Last night, when I least expected it...He did.

Through my good days and my horrible days, I have remained ever faithful. Some days I don't understand why. Some days I cry out in agony....but when I keep praying that He will help me to trust Him...sure enough....on HIS time.....He displays wonders that are meant just for me.

Thank you God!!! Thank you!

New Jellies!

2011-07-01T13:25:00.004-04:00

I saw them and just couldn't help myself. I wanted her to have something other than her AfO braces. I wanted her to have something normal and pink.

And she LOVES them!!!

Reminding herself..

2011-06-24T12:11:00.002-04:00

During Speech Therapy, they will "cue" Lilah on her mouth and face.

Lilah is SO smart that she will cue HERSELF when I make a sound and ask her to repeat it

Someday I will hear that sweet voice.

I pray to hear those sounds more and more.

She is working SO hard and really trying to communicate with us.

Yesterday during her co-treat she made so many new sounds.

I am so proud of her!

Goldilocks

2011-06-24T07:54:00.009-04:00

Last night before the storm came in, we were enjoying the breeze that was cooling our 116 degree(with heat index) weather. I thought it was the PERFECT opportunity to capture how LONG and curly her hair is.

God has blessed her with the most gorgeous blonde ringlets to go along with her patient, calm, gentle spirit. She is a true, natural beauty...inside and out.

" Lilah Sharp, No Ma'am!"

2011-06-23T14:49:00.005-04:00

It starts out innocent enough. She is happy as can be...

Then she reaches her little hand up and rips that patch off. And THESE are the faces she makes when Mama Bear says, "Lilah Sharp, No Ma'am" as she rips it off....

Little stinker is 2.5 years old and showing her age. She is feisty, determined, strong and fights her Mama...THANK GOD! These little "normal" moments make me very happy that she knows how to turn on the drama. This shows me she has FIGHT. This proves to me that she CAN do all the things that her peers can. She will do them at her time, when she is ready....like most women. hehehehe.

No words

2011-06-21T06:16:00.004-04:00

Last night, instead of turning to this blog, praying, etc. I wrote on Facebook asking "why does it still hurt to see, know, face the truth of your child's delays? Will it hurt like this forever? Will I get sad every time, does it get easier, does it ever stop ripping your heart out? I do see the bigger perspective. I know this, but my heart hurts so badly sometimes."

On Facebook you only have a limited amount of space to make your "status." so all of my thoughts...or the most I could wrap my head around couldn't all go in that tiny 420 items spot.

I. Love. My. Child.

Understand this. I am more grateful than anyone could ever realize. I thank God for Lilah...every moment of everyday. Yes, I really do.... with a sincere heart.

But, there are moments that there is pain I cannot figure out why it is there.

Most of the people who responded were people who are in Holland, have been, and can offer some truth. Others who commented on my status obviously love and care for us...and I need and appreciate that, but they have never experienced these emotions for themselves. They do not know what it is like to be in my shoes, in my head, in my emotions.

Let me explain what happened....

Yesterday Aaron found some of my videos of the kids. I watched and giggled and we just had a blast. One was of Alex at 2. It was 6 seconds long and she was telling me that she "farted" and I said calmly, " tooted" and Sahel said, " no, I farted." we all giggled and giggled at her honesty, frankness, and how matter of fact she was.

And then a wave of pain hit me....Lilah is 2.5, doesn't walk like that, and she cannot communicate with me..... I was sad. And then at the same time very angry with myself for feeling this way.

Having spent 6 years in Italy, with 3 amazing children who kept me on my toes and said the darndest things....landing in Holland and spending so much time in therapies trying to help your precious child learn and grow.....uggggggggggg.

I. Want. Lilah. To. Talk. To. Me.

I want to hear her voice, have her ask me things, I want to hear her thoughts and feelings. I want to know what makes her happy, sad, mad, frustrated. I want to laugh at her jokes. I want to have conversations with her. I know that we may have this and we may not. I know that we are having our own conversations in our way right now... but, I still want these things.

I want to see her walk, dance, run, jump, hop. I know, some of you are reading telling me to shut up. But, here it is. Here are the dreams I had for my child. That you had for yours. I had those for all of my children. I got to experience some amazing moments with all of my children.

But, sometimes I feel like landing in Italy first is almost a curse because I am ill-prepared for this journey.

I am a stay at home Mom. I love my job. My job means I place the people in my home above and beyond myself. I place their wants, desires, and needs above mine. I am at their call. I spend most of my day in the kitchen, laundry room, cleaning, and then I spend my time in therapies with Lilah, school functions for the older three, driving, going, never stopping. I get up before my family to run...to run and talk to God and give it to Him. To spend 30 minutes with the Lord, placing it all in His hands.

hmmm, have I really? Why do I keep taking it back? Why do I ask Him to help me trust Him, but then I want to hold it and control it? Why do I feel like this? Am I human? Am I too tired? Am I sad for reasons that I shouldn't be? Am I lonely? In need of friends to understand this pain with me?

I love that people want and try to help me with their sweet words. Sometimes, there are no words. Sometimes this pain, this hurt, these emotions are SO real and no "phrase" makes it better. Try as we all do to make someone feel better with words...that is not what is needed. A hug, without words, to listen, to TRY to feel the pain, to be in it with me, to allow me to feel my feelings. For 2.5 years since Lilah's birth, and surprise diagnosis, there have been so many words...but less and less listening and hugs. No one has really allowed me to feel my emotions. Its been a "she's a gift, you have 3 older children, pull yourself together, you can do this, you are so strong. etc" I have seen more and more people pull away from me in the last year. Why? Am I so hard to love? I don't get invited to things. What this Mom needs is a true friend who will not judge her emotions, who will not tell her HOW to feel, will not think she is crazy for having great moments and really crappy ones, I need a consistent friend who will not leave me when times get tough, I need someone to not look at me like "thank God its not me" and when can I go home because she is too much to handle.

Sometimes there are no words for the emotions, for the pain, for the real feelings. Sometimes I don't want to talk about it. I want to place it here on this blog, where I know I will not be interrupted, lay it on the line, get it out, and TRY to feel better.

Sometimes that is all I need...blog it, cry my eyes out as I type...which I am doing right now, and pray. Sometimes I need to see a face, feel a hug, be allowed to cry without words being said to "make" me feel better. Sometimes...it just hurts and I need to feel it.

Everyone around me is in Italy...and I have 3/4 of me that is.... and that is a hard. Very, very hard. Trying to balance it all, make sure that they are all getting what they need, how they need it, when they need it, etc.

So, I understand why no one gets me. I understand why no one really wants to be around me a lot.

So, I pray and I ask Jesus to comfort me...and sometimes He does right away....and other times He allows me to feel the pain for much longer than I want to feel it...and here is where I am right now. So, without much of a spell check, without much proof reading, I am laying this out there and now, I will get dressed to run, and pray that God shows up and I can hear Him this morning and He will comfort me.

MILESTONE REACHED!

2011-06-19T14:11:00.000-04:00

After months and MONTHS of therapy, Lilah reached another milestone. This. is. HUGE!

PRAISE JESUS!!!!

Happy Father's Day

2011-06-19T06:35:00.002-04:00

My children are beyond blessed to have a father who wants to spend time with them, play games, dress-up, act crazy, dance, sing, takes them on one-on-one dates, and loves them unconditionally for who they are. Aaron never asks them to be different. He never demands them to push beyond their potential. He is a very present father.

My children are blessed to have a Daddy who has come to know the Lord in a VERY personal way after 15 years as an atheist. Aaron is the first one in the mornings to put the praise music on. He loves to hear Johnny Diaz, The Newsboys, Hillsong United, and more fill our home with worship that will inspire and uplift the family. He prays for and with his children. He serves faithfully at church. He LOVES the children in the room we volunteer in more than anyone would ever know. He takes his role as Division Leader in the classroom VERY seriously. Aaron loves Saturday nights when we serve and worship together at SCC....

This was not always the case. When I met Aaron in 1992, I was entering my freshman year in high school. Aaron never had a LOVE for the Lord back then..it was very much the reverse. So, the first 15 years of our relationship and marriage were some of the toughest times. I was never prepared for all that happened, but....God knew what He was doing because He took our marriage to a place that you make a decision. We decided to fight... and fight hard to save it.

All of that heartache, pain, and frustration wasn't doing us any good. Forgiveness had to come into play. Forgiving for some very, very painful major events, and forgiving each other for the little things that build over the years. This forgiveness led God to bless us with Lilah. One of the greatest gifts we have in our home...

I remember asking God some very hard questions, "Why, after all that I have been through, haven't I suffered enough, why would you allow my child to be born so different, and give her a life full of such pain? God, why would you let this happen? Why Lilah? Why?"

Man, I didn't see it back then. I didn't know that what I was holding in my hands was not only going to bless my marriage, change my perspective, draw me closer to the Lord, but would heal wounds in my heart and my marriage that some would never allow to be healed. All that we went through the first 15 years of our relationship was the road God needed to take us to to prepare our hearts to be the best parents for all of our children, but especially Lilah.

One of the best things that happens in our home several times a day, is when Aaron will enter a room and Lilah will see him and she will start sputtering her lips trying to beat box like her Daddy. The smile on her face....and his.....priceless.

Aaron,
I thank God for you. I thank God for the man you are. I thank HIM for taking us down the road that led us to a much better marriage than we could have ever dreamed. I thank God for the heart you have. I love watching you LOVE the Lord. Watching the passion in your eyes, seeing the change in your heart, and actions...inspires me. I love watching you with our children. I love seeing how the adore you, respond to you, and need you in their lives. I love that your presence and heart is giving them a confidence that no one else can give. I love you very much. I am proud of you. You are an amazing man and a wonderful father. Happy Father's Day.
Always,
Katie

I love you more than you will ever know.

Evaluation... Honesty. Truth. Prayer.

2011-06-16T18:13:00.003-04:00

This morning at Backus Lilah was in RARE form. She cried the entire time during PT. I don't know why. I suppose she was having one of those days. Nothing happened any different when we left home. She just didn't want to work. The next hour, after PT, is Lilah's OT/ST co-treat. The last few weeks Lilah has worked VERY, very hard and done a wonderful job.

Today she was re-evaluated for OT.

I told Sarah that Lilah wasn't in the best of moods, but she decided to give it a go anyhow. Lilah was still acting SO mad, so I decided to remove her patch and see if she would cooperate more.

Lilah put blocks into the small opening of the container, and removed some items with one finger...but not many. The tests are little "games" they play..."putting a puzzle piece into the same shape"(i.e. a large square, etc) to see what skills she has learned and knows how to do.

The testing went on and then Sarah scored her "results."

Sarah told me that Lilah was at the 5th percentile for fine motor accuracy with her fingers. Then she told me how much Lilah has improved and how she went from one score to the next. Dana, Lilah's ST at Backus, said that as long as they are improving that is a great sign. Sarah said that Lilah improved by 20%...I think. She said that it was a great success.

I got into the car and had to pray. Really. I started to feel that wave of pain again. That "delay" word just hurts to hear...so bad.

(Ok, before ANYONE judges me for this...please understand...we ALL want the BEST for our children. We want our children to live happy lives, without pain and agony, and we want them to have less trials than we had.)

I started to feel as if she was being judged... AGAIN. I started to feel that deep hurt. I started to get sad again and that question came up again in my heart, "God, why Lilah?" I watch her FIGHT so hard. I watch her work her TAIL off to master skills and I am constantly cheering and coaching her on.

I HATE that feeling. I HATE the feeling that Satan places in me. I know to pray and pray...and I do that, but darn if he doesn't fight me so hard. I have cried twice already today....

WHY do these evaluations HURT so bad? Why do I allow them to pain me? Do they REALLY matter? In the GRAND scheme of this life, AND the next...NO. But, to THIS world, and to the measurements that THIS world places on my child...yes, unfortunately, these "tests" matter. They matter where she will be "placed", what she will be "considered" for and what "services" she will be offered, how others view heretc, etc, etc.

Sometimes living in Holland is REALLY hard.

I am so ashamed of my feelings. I wonder if the problem is really ME. I wonder if I am the ONLY parent feeling this pain OR am I the ONLY one brave enough to tell the truth of this hurt.

Then, as I pray and I BEG God to give me peace...I realize that NO matter what this world says about her..she is perfect in HIS image. Never by this world, where we judge others, ad unfortunately ourselves, on what we look like, talk like, how others "see" us, and worse...what we can "contribute" to society. But, Lilah is perfect..yes PERFECT in HIS eyes...and MINE.

If I stripped away the disability and took away the pain and the heartache and the sorrow and the tears, Lilah wouldn't be LILAH.

Lilah is SO patient.SO kind. SO loving. SO gentle. SO DETERMINED. Lilah has more perseverance than ANYONE I know. I am daily inspired by her. I am inspired to be a better me. To be a better ...everything.

So, yes...I am hurting right now. The pain is REAL. The emotions are genuine...and I am sharing them with you because I believe that somehow it will bring me closer to God by asking you to pray for me...and it will help you all to see the truth...sometimes Holland is hard, but most times it is a wonderful place that has opened the eyes of my heart to a closer walk with Christ.

I am by NO means perfect. I make more mistakes than I care to admit. BUT, I am trying EACH day to learn how to be a better Mom and a better advocate and a better citizen in Holland while I wait for my place in eternity.

I may fail, but I am determined to never give up HOPE.....even in the midst of tears.

The Eyes of my children

2011-06-15T17:03:00.004-04:00

Obviously with Lilah's eye conditions I am VERY into eyes. I spend a great deal of time looking into the eyes of almost everyone I meet.

I decided to give you a glimpse of the beautiful eyes of ALL of my children.

First, Alex's gorgeous brown eyes. This beauty has the heart of GOLD. She thinks of others and loves so deep and so pure. Her laughter will send you into immediate giggles! Out of 4 children, thank goodness I have one that look just like her Mama.

Next, my Sassy little Sammie. Spunky, outgoing and fun...this one keeps me on my toes. She is incredibly smart and yes, you can see the "fun" in her eyes. (or the careful, I am mischievous. hehehehe)

Next are Eli's handsome eyes. So full of wonder, and interest. My little man is ALL boy! What a sweet soul he is. Always caring and protecting his sisters, but especially Lilah. Even though they both wear floaties in the pool, he still finds Lilah and says, "let me help you."

And without further delay, here is a picture from just a few minutes ago that I took of Lilah's eyes.

Do you see the clarity?
Do you see how BLUE they are?

Do you remember how WHITE they were?

Yes, there is some cloudiness, and if you look closely you can see how her eyes don't sparkle exactly like her older siblings. But, what you can see is the miracle in her.

There is NO denying God, His awesome power, and strength when you look in Lilah's eyes.

Remember, Lilah was BLIND at birth. Remember, Dr.D said she would need MULTIPLE corneal transplants and she would still be blind due to glaucoma. Remember that Lilah has NEVER had a surgery on her eyes. Remember that there really is NO explanation for how FAST her eyes have cleared. One of my strongest memories was when we went back to see Dr. Lee 8 days after starting the drops and he said, "I have never seen a child's eyes clear this fast." Remember, our God heals. Our God saves. Even in the midst of DAILY pain...I look for HIM as much as I can.

Yes, this is me admitting that I either cry daily, or want to, for things that have happened to my child, BUT...

The song Blessings by Laura Story really puts it into perspective for me...

"What if your blessings come from raindrops

what if your healing comes through tears

what if a thousand sleepless nights are what it takes to know Your near

What if the trials of this life are Your mercies in disguise"

Click HERE to hear it. Guarantee you will cry...and you WILL feel Him and feel better. I sure do!

A little story from today..

2011-06-14T14:06:00.003-04:00

Before I went on my run this morning, the laundry called...the normal 2 loads per day was now at 4..and I knew what would happen if I didn't attack some of it early on. So, I left later than I had hoped to leave, but was still able to get the 4 miles in. (I get more and more nervous as the weeks go by, and the weekend miles add up, as I train for my first full, 26.2 mile, marathon)

I quickly showered when I came home, got the kids in the car, and we made our way to Aaron's work. Got his pay stub then went to the SS office for Lilah's review. Honestly, I am VERY glad I had an appointment and it wasn't as painful as I was expecting...and the kids...YES, all 4, were really good.

So, I loaded the kids back in the car and proceeded back home where Tara, Lilah's OT with BCW(Babies Can't Wait) came a few minutes later.

I decided to show Tara the videos of Lilah in the pool(check out the posts below) She said, "WOW!" Then she told me to keep it up and how she thought the pool was an incredible dorm of therapy for everyone, but especially Lilah.

It was getting close to lunch time, and I could tell Lilah was fading some, so I asked Tara, as Lilah crawled to the kitchen, if I could go ahead and give her some lunch and she could work on spoon feeding with her. Well, Lilah took the spoon and fed herself the cottage cheese and Tara said, "look at you!"

Now, Lilah isn't perfect with it, but she is doing it. She is doing the best she can to place the spoon as near to the bowl, or in the bowl, as she can. She did such a great job!

Tara told me how "INCREDIBLY impressed" she was with Lilah. She said, "every time I come, she is always doing something new."

This Mama Bear is very proud of her little girl!

So, as the younger two nap and the older two are calling my name...we will be getting ready for our pool trip today...

Might as well use it...let the older three play and have fun...and Lilah does her own therapy and loves it.

Please keep praying for her. Your prayers ARE working and she IS improving a little more each day. Please continue to pray for her eyes. The patching is working( at least I believe so)

Thank you SO much!

Look how GREAT she is doing...

2011-06-13T19:52:00.000-04:00

7 days ago I decided toput Lilah in the "little" pool and see what she could do "alone." I say that word with the understanding that I was right there to jump in that 1.5 foot water and get her if need be. In 7 days she went from a bob of a stand to now trying to walk in the water with her feet. I do believe a miracle is happening right in front of our eyes...and YES, I am documenting the ENTIRE thing. Oh, and on this video you will see the smiling faces of the older three as well. ENJOY!!

Lilah STANDING in the pool

2011-06-10T19:00:00.001-04:00

I have been telling everybody about her standing in the pool, how she acts, what she does, and I decided you REALLY needed to see it LIVE action to understand how AWESOME our God is, and how HARD she has worked. I do believe you will LOVE this. I, certainly, do!..ENJOY!

So much to tell...

2011-06-07T14:16:00.002-04:00

I don't even know where to start with this one. Ha, honesty. Did you expect anything less from me?

A few months ago the talk of PSI( pre-school intervention) came up at Lilah's therapies. As of November Lilah will no longer be treated by Babies Can't Wait.(The early intervention program) On her third birthday, this November, Lilah will age out of BCW, and she will enter the PSI system.
I have been very fearful of this because I have heard horror stories of the IEP(Individualized Education Plan) meetings here in my county. I know that there can be some that are wonderful, but the ones I have heard about seem like the Mother alone staring down the death squad. I was, quite honestly, VERY nervous.

Today Lilah had her introduction to PSI meeting.

Aaron came! YAY! His first meeting! It was great for him to be a part of this. I didn't feel so alone. I didn't feel so intimidated. And He got to sit in and understand what all I am talking about( poor guy looked a little overwhelmed when we were done)
When we got there, Dawn, Lilah's BCW coordinator, was out front and walked us back to meet Catherine, Lilah's PSI Liaison. (But before that, we went to the school nurse and they tested Lilah's hearing...perfect.) Catherine was so sweet and easy to get along with.
We talked about Lilah's therapies now, what we hope that she will have, what she will need, and then we talked about her Doctors. Well, the topic of Dr. D came up. Catherine said it was the 2ND time in one day that she had heard how mean he is to his patients. I told her the entire story start to finish of Lilah's encounters with him, specifically what happened to us in the hospital...and her eyes filled with tears. She said, "Someone needs to do something about him. That makes me so sad." ( But, I said those words, without crying, without tears, and I was strong)
I smiled a LOT through the meeting. Told of Lilah's successes, and talked about how even though she is delayed, she is hitting those milestones, even if it is a year behind those her "age" and where I would really like to see her. I also asked for the continuation of "many therapies" because it is obvious the "sponge has been soaking and is now understanding."

Here is what I mean by that...

Just yesterday, ALONE, Lilah said ,"na, na, na, na" without prompting as I put bananas into the grocery cart. Then I got the girls early from school after Alex's awards program( GO Alex! Honor Roll for the entire 2ND grade year! That's my girl!!) and we went to the pool. At the pool, which Lilah LOVES, we swam, Lilah blew bubbles, she made the sound, "k, k, k" for kick when I asked her to kick. Then, I carried her to the baby pool(1.5 foot deep) I decided to let her "swim" alone with her swimmers on. (I was right there, but I wanted to give her freedom to see what she might do, without being attached to me) Lilah shocked us all. She was bobbing in the water, then all of a sudden out of no where, WITHOUT holding on....she STOOD! Yes, you read those words correct. NOT a typo. Lilah Hope Sharp stood ALONE!!!!
I was shocked. I was screaming. I sat there in AWE of my child. What? My mind raced. REALLY?!? God, really!?! Did that just happen???
And then she did it again, and again, and AGAIN. My friend, Marci, came from SC to visit and she saw the entire thing too. Alex, Sammie, and Eli were cheering. It was INCREDIBLE.
I looked over at Marci and said, "I know where I am coming EVERY day this summer."

I just cannot put into words my thoughts and emotions right now. Seriously, I am beside myself with joy. My HOPE has always been that Lilah would be a HAPPY, healthy, independent child. My HOPE has always remained constant that God would heal her, guide her, heal ME, help ME to understand that even though I didn't pick this path for my child, for my family, for my life...it has been the BIGGEST blessing. I don't just see things happen with my kids and say, "oh, that is great." NO, Lilah has blessed me by pushing more of the me than I ever thought I could be. I am present. I am there!! I don't take ANYTHING for granted. I SCREAM with JOY when they ALL(4)do things that I am proud of. I stand up for them. I fight for them. I support them. I never let a moment go by without thanking God for placing them in my care. He chose me. He chose me to watch these gifts. He chose me to ADVOCATE for Lilah. And in the moments(this morning even) when I am WEAK and fearful and scared and worried...I place my faith, my trust, my HOPE and my assurance in HIM...and I am grateful.

Wow, God is so, VERY good!

and all God's people said," AMEN!"

We can't do it without you

2011-06-04T15:37:00.002-04:00

We rely on Him, alone.

a BIG girl bed

2011-06-02T14:38:00.004-04:00

The time had come. She is climbing, exploring, and becoming more daring. I was so scared she was going to try one of her climbing acts in the middle of the night and fall flat on her face out of the crib. Yes, I could have gotten a crib tent. I could have kept her in her crib forever, but she was ready.
So, last Thursday afternoon, after telling her therapists what I wanted to do, they agreed she was ready...Lilah got a new bed.
We don't do "toddler" beds in our family. We see them as a waste of money. We just buy a twin, place the mattress and box spring on the floor, use a guard rail, lay pillows down in case of a roll out and there you have it.
For Lilah we made one exception. Lilah has a gate at her door, which she can open, but I can hear the CLING if she opens it in the middle of the night.

Lilah LOVES her new bed.

So much so that when we went to the store to get it( the local Sam's) she kept repeating, "be, be" her version of "bed, bed" over and over again. If we mention her bed now, we get an immediate, "be, be" she adores her bed. She feels free.

Yes, Lilah knows how to climb in AND out of it. We have taught her to roll to her tummy and slide "hiney first" on her belly so her feet will touch the floor first and she can turn around from there.

I watched her after a few days and noticed something....

She would crawl up on her bed and try to touch the dot she has been looking at for months.

Then she did it....she stood straight up and touched that dot.

Look at how strong, powerful, beautiful, and perfect she is. THIS image shows how FAR she has come.

Thank you God for this journey...and all it has taught me.

Miracles can happen.....

2011-05-28T08:57:00.004-04:00

if you JUST believe!

Do you remember her eyes 30 months ago when she was born?

Do you remember how white they were?

Do you remember that I pleaded, begged, and questioned God?

Do you remember that I could not understand WHY?

Do you remember that I poured out my faith on this blog for all to see?

Do you remember me asking for prayers DAILY?

Do you want to see how FAR her eyes have come without surgery?

Do you want to see a living miracle?

These pictures are from this morning 5-28-11.

I chose not to edit them. I wanted you to see what I see. Raw.

This is Lilah's right eye. The "worse" of the two. The eye we were told she would probably lose.

Not only has patching her eye helped with the "turning" of it. The patching has helped her brain remember it is there and not "shut it off."

Do you see the DARK pupil?

Do you see that the "white" cloudy area is almost non-existent?
Lilah functions with this patch on for 5 hours a day. I have done many "tests" at home to see what I think she can see out of her right eye alone. And let me tell you. She can reach for cheerios, goldfish and more. WITH her patch on. Even though her depth perception is way off due to the two different eye conditions, Lilah is still a -ALMOST-walking, attempting to talk, miracle.

If you didn't believe in miracles before...

Maybe you do now!

PRAISE JESUS!!!!!!

Lilah singing Hosanna..

2011-05-27T16:42:00.001-04:00

Lilah works SO hard at all of her therapies. VERY, very hard. She is bombarded with new techniques. New skills. Things that we all take SO for granted, that come SO easy for others, take her double or even triple the time.And that is just fine. She is learning them!
Lilah has been working SO hard in speech therapy. I wanted to share what she does when she hears this song. Listen to her sounds. Watch her "watch" the video and make the sounds with her mouth. Watch how she forms her lips. The best part is what song she LOVES to sing with. Before you start the video, please push pause(ll) on the right of your screen. I don't want you to miss any of this. Trust me, it is worth it.
HOSANNA in the HIGHEST for sure. Thank you, God, for the sounds from my sweet angel! Thank you ALL for the prayers for Lilah,and our family, they are WORKING!

Requesting Prayers

2011-05-24T14:20:00.002-04:00

I believe in the power of prayer.

I believe that when we ask, with all of our heart, trust that He can and He will, the Lord will answer us. Somehow, someway He answers us.

Lilah will be seeing Dr. Greenberg again in August. This next visit is going to be more difficult. See, my little fighter has become quite that...a fighter. She does not like anyone to get near her eyes anymore. I must say, I don't blame her. Every Dr. we visit is so interested in her eyes. The residents and students are just so curious. And I am normally very happy to let them look and examine them, and I tell them of her miracle to help them in their careers. All of that exam time, and the last nasty infection in her right eye, have made Lilah very apprehensive.
This next visit will determine if Lilah needs surgery to correct her "lazy" right eye. The patching IS working, so much so that we must patch 5 hours a day. Now, most Mom's I talk to HATE patching...and I do too. BUT, if that little nuisance, in the form of a cute little bandaid, can prevent her from surgery...she WILL wear it. Lilah fights me and fights me, but I win, each time, and we get that 5 hours in. Some days 6! I am determined to do all I can to help my girl.
BUT, I cannot do this on my own strength. I cannot do this alone. I need God to help me. I need prayer warriors to pray with me to intercede on her behalf.
To date Lilah has not had surgery on her eyes. PRAISE GOD! for that. To date she has never had a transplant, muscle repair, or EUA(exam under anesthesia). Lilah IS a modern day miracle.

I believe this miracle can continue. I need your help.

Will you commit to pray for Lilah, for her eyes, for her continued progress in therapies?

August 10th we go back to Atlanta to determine if she will need the muscle repair surgery and an EUA will probably be scheduled. An EUA for most people would be easy. And it is, but for our family that means more time of Mommy and Daddy away from Alex, Sammie, and Eli. That means finding a hotel in Atlanta to stay in the night before. More time for Aaron off of work, more time for someone else.. whoever watches the older three to take off of work. It isn't just an easy, go under, look in her eyes and see, then go home. With a family our size, it takes lots and lots of planning. There are a lot of aspects to our family life that are involved. We are a family first and foremost that is our ministry... the six people in our home. Having a child with needs is hard on all the family. We do our best to balance the time we spend with and for Lilah with Alex, Sammie, and Eli too. ANd the time we spend together keeping our marriage alive.

So here is my request...

Lord,
I come to you asking for your healing mercies, again. I ask that you please keep Lilah's eyes straight. I ask that you continue to clear her eyes and allow Dr. Greenberg to be as shocked and impressed with her red reflexes as Dr. Cossio was. Lord, I believe in your power. I believe in your miracles. I believe that you have a plan for Lilah and that you are using her to reach so many. I am asking that you, Lord, would use your hands, these patches, and the healing hands of others to prevent any surgery from her eyes. Lord, I also trust that if it be your will that she need these procedures that you have Lilah safely in your grip. Lord, I ask that you grant me your peace and help me to lay comfortably in your arms knowing that you love Lilah so much and you created her. Lord, I thank you for the miracles you have done in her life. I thank you for the lives you have touched through Lilah. I thank you for the miracles you have yet to show through my girl. I love you, Lord, and am so grateful for you.
Thank you.
Amen.

Many thanks to all who prayed this prayer, and many others like it, on Lilah's and my behalf. This road, this journey, is not easy, but with God and partners in prayer, it is much less lonely.
Thank you from the bottom of my heart.
Much Love,
Katie

Watch THIS!

2011-05-20T16:59:00.000-04:00

Lilah was standing at my computer, turned around, grabbed on to the stool and did this:
Thank God for the video camera on my phone and for HIS awesome promises!
Go, Lilah, GOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!

Hi, my name is Lilah

2011-05-18T14:17:00.003-04:00

....and I am very happy with who I am. I know you might be scared of me because I look different from most other children. I know you may not know what to say around me, and that is OK. Just know that I need you in my life. I need you to talk to me. I need you to love me. I need you to love my family. I need you to understand that my Mommy loves me very much and when she is fighting for me she may do things that you do not understand. She may cry sometimes. She may ask God why. My Mommy loves me with all of her heart and wants you to love me too. My Mommy has worked really hard for me. I know she will continue to work hard for me. She will fight for me and will not stop until the world can treat me like Jesus does. I am beautiful. My Mommy tells me about a million times a day. I believe her because I smile like this when she says it....

Please get to know me. I take a little bit more patience than other children. I am not as fast as others. I am 29.5 months old and cannot walk un-assisted, yet. I cannot speak in words or phrases, yet, but I will do those things...someday. I am happy being me. I want you to be happy around me. Please do not be scared of me. God isn't. He made me JUST as I am. He planned me to be unique. He planned me to be a miracle. An unexplained birth, with an unexplained diagnosis, with two very rare visual impairments. If you see me on my Mama's hip, in the grocery store, at church, or at my home...please talk to me. Give me a few minutes to respond. I may smile. I may stare. My eyes don't work like yours do, so it takes me just a few minutes to understand what your face looks like. I can see you. Just not like my Mommy can.
I can hear really well. Please don't shout around me. Because my eyes don't work well, my ears work better than yours.
If my Mommy tells you about me, listen. She wants you to know me. I want you to know me. I want to feel your love. My family needs to feel your love.
I want you to know how much I appreciate you praying for me. My eyes are better because of your prayers. I am getting stronger everyday because of your prayers. I believe in Jesus. My Mommy tells me about Him and how special I am to Him everyday. I am a gift He created just for my Mama.
Please know that I need you in my life. All of you. Each one of you plays a very unique roll in my life, and in the life of my family.
Please know that we all love you very much.
Right now my Mommy is still learning how to care for me. She is trying to learn how to walk this path. She may require a little more love and patience... just like me. God didn't tell her about me. I was a surprise, and so was my diagnosis. Bare with my Mommy and Daddy...they are trying. Know that they love me, and my sisters and brother with all of their heart.
If you get to know me you will find that I have the BEST smile, the cutest giggle, and the tightest hugs. I will spend hours feeling your hair, necklaces, shirt, etc. I love to look at you. Because my eyes move, they take a little bit more time to focus.
Thank you for loving me. Thank you for accepting me. Thank you for loving my family. Above all, thank you for the prayers.

I love you all,
Lilah

Lilah and her beatboxing LOVE

2011-05-17T17:26:00.000-04:00

Beautiful...just beautiful!

2011-05-03T14:31:00.006-04:00

Our society ,measures our worth by the money in our account, fame we hold, "labels" that are in our clothes, cars we drive, shoes on our feet, what we look like, how we can "benefit" the world. Our world misses the heart of each person. We focus too much on the outside of a person, rather than the heart of the creation of God.

For the past few months I have been doing an AMAZING study with some remarkable women. The book is Captivating by John and Stasi Eldredge. This book, and the study, have helped me find my WORTH as a woman. We were created in God's image. We are LOVED! Read that again...we are LOVED. YOU are LOVED. Not because of what you do or think or feel or act or give or try...God just loves YOU. He made you...exactly how you are for a reason and He made you in HIS image.

All of us have been hurt. We have been wounded So deeply. Some worse than others. Our hurts are REAL and we need to own them and realize that those hurts do NOT define who we are! Those hurts happened because Satan knows who we were made to be, he fears that we will lead others and we will do God's work and he HATES that. WOW!

This study has made me look at myself differently. Now, do I struggle with my past and the hurts I have. YES. But, I am making a daily effort to read, pray, stay in the scriptures and keep asking God to reveal what He really feels about me. This study has also helped me view my children VERY differently. He made them and gave them to ME for a purpose.

God knew that I would fight tooth and NAIL to help Lilah get what she needs, when she needs it, and how she needs it. God knew I would nurture her heart so she would see her true beauty.
God knew I would love her like no one else. God knew I would give her the love that He gives me. Unconditional love. God knew I would doubt myself, my abilities to do this job, why He gave her to me, what my path is, why I am in Holland, and more. He planned me to be Lilah's Mother because He knew I wouldn't take her for granted.

Satan thought he was defeating me by using people and circumstances to hurt me, but what Satan didn't know was that God had Lilah planned for my future. He was going to use Lilah to show me TRUE beauty and erase the worldly LIES I had believed since I was 7 years old. Lilah was sent, as were all of my children, to rescue me and help me see HIS face and HIS glory. Have I been a perfect Mother? No. Have I messed up in places? yes. Will I mess up again? yes. I am human. Will I get back up everyday and FIGHT until I have nothing left in me? You've got that right!

I look at Lilah and I see PERFECT beauty. I see God's face.

She is happy, curious, content, LOVED, loving, affectionate, unbiased with her hugs and love, she is JOY, she is peace, she is...HOPE!

Thank you, God, for placing this amazing gift in my possession. Thank you for trusting me with her care. I pray that I honor and glorify you.

Thank you, dear Jesus, THANK YOU!

Comments...

2011-05-03T10:41:00.002-04:00

I have had to re-activate the "word verification" due to spam comments. Not what I want to do, but I must keep the hackers and the spammers where they need to be...away from me.

Last year I got some nasty comments that really shook me as a person, Mother, wife, friend, etc.
I changed the "title" of my comment section to Generous Words of Hope to help people understand that a positive word goes a LONG way. I have done several studies and am learning that what others say about me does NOT define who I am...and the truth about me and my heart.

I started this blog to keep others updated on Lilah, release my feelings, find other people and parents out there like me. I have vowed to be honest, and open, allowing my transparency to shine so that God could use me, and Lilah, to reach others out there. This journey can be very, VERY lonely sometimes. As the body of Christ we are the hands, feet, voice, and spirit of HIM. I need to know that I am not alone in this battle. I need to be able to do battle against the evil one and see Christ in it all... even in the midst of very painful moments. I will continue to be truthful no matter what.

I am grateful for the encouragement, support, LOVE, PRAYERS, and positivity.

I love reading your comments and knowing that I am not alone.

Thank you all and sorry for the inconvenience of the word verification.

WOW! HAPPY TEARS!

2011-05-01T08:15:00.002-04:00

About a month ago I received an email from a local photographer. She is not JUST a photographer. She is a legend here in Savannah. Her work speaks for itself!!

Christine Hall sent me an email asking where Lilah went to therapy. She was doing a project for Backus and wanted to take pictures of Lilah. I was BEYOND speechless and immediately said, "YES!"

Christine is not just talented. She is kind, funny, friendly, and SO down-to-earth. I felt like I had reconnected with a long lost best friend when I met her. She, as a person, is truly AMAZING!

We met on a Friday afternoon. Alex and Sammie were at school, so Eli, Lilah and I got to play with Christine. Not only did she capture AMAZING images of Lilah, but she captured the spirit of Eli, and the IMMENSE love I have for Lilah.

Please click HERE to see why I am now crying and in LOVE with Christine!

Hoping we can get together with her for some family portraits SOON!

Thank you, from the BOTTOM of my heart, to the INCREDIBLE Christine Hall!(click in her name to visit her website and see her work)

Mama Bear

2011-04-29T14:11:00.007-04:00

Have you ever read or heard about how Mother Bears protect their young? The cubs are at such a risk for other prey to hurt them that the Mother is always on HIGH alert when she takes her cubs out of the lair. She will raise up on her back legs, growl, make a scene...anything to protect her babies. Mother Bears have been known to kill anything that comes too close and makes her uncomfortable in regards to her cubs.

I call myself Mama Bear. I have made such a fuss about my kids. I have gone to all lengths to protect them, and I have "made a scene" from time to time. Alright, let's be honest. When it comes to my children, WATCH OUT....this Mama Bear will NOT let you hurt them...and if you do...be prepared for a fight. And, I will NORMALLY win! I don't really care what others think about me when it involves my children. I know my own personal insecurities, but when my "cubs" are involved, this MAMA BEAR will stop at nothing to take care of it.

My cubs have been hurt, and this Mama Bear is roaring....

When school first started this year, my oldest, Alex, was isolated, made fun of, and talked down to because she wasn't "in" the clique. She didn't "like" the music they did, dress like they did with the fancy bows, shiny shoes, etc. We had long discussions about what "types" of people she needed to invest her time and energy: Those people who love her heart, not what she does and "wears." After a few months, she became friends with those who hurt her, but she still keeps them at a very safe distance, and only allows the ones that aren't "surface" friends to know her deepest desires.

My sweet boy, Eli, too, has had his little friends hurt his feelings and he has retold stories over and over and over again about how he doesn't understand why they won't "play nicer" with him.
But, nothing like what you are about to read.

Last year Sammie attended the Pre-K program at the YMCA, here locally. It is a state funded, lottery awarded program. My sweet girl, who is flamboyant, fun, out going, happy, and too smart for her own good, started crying daily. We found out that the teachers were mean and rude to her, never gave her the same attention that the other children got. Sammie was "isolated" from the same love and attention that the other children received. One day a little boy touched her inappropriately. She came home crying, told me what happened, and I became enraged. I hid my anger long enough to ask questions of how, what, when, where, etc. Sammie retold the same story, line by line to Alex and I heard it through the baby monitor. It was obvious she was NOT lying. I learned that the teachers told her that she "made it up" and not to worry about it. I was told that if Sammie hadn't been flirting with him that he wouldn't have done it. Seriously, at 4? They really thought she was flirting with him at 4 years old! I called the state, had them investigated and quickly removed her from them because of this and the fact that the teachers continued to "isolate" Sammie as if she was the "predator." She was only at the Y for one month. She then went to the same school that Alex had for pre-K and they helped love her back to her normal self.

Well, my girl has been bullied again.

Sammie has been sad about some of the kids in the class. The way they "talk" to her, ignore her, and call her names. We have discussed, at length, how to love people who talk bad about you, even when it is hard. We have discussed what "types" of friends she should spend her most quality time with. There is one girl in her class that keeps telling her, "I won't be your friend unless you give me a gift." And this is a daily event. Two children in her class are always "kissing" on the playground. Seriously, at 5 &6? What is going on here? Then the past few weeks to a month Sammie has been telling us how she's such a "naughty girl", not pretty enough, and no one likes her. Last week she started telling me that she "hates herself." WHAT? I have been prying, and pushing, and digging to get down to the bottom of this. Last night she told me about several boys that have been making fun of her and calling her names. The same boys that seem to cause trouble and the parents do not step up and interact. So, Mama Bear went to the school this morning, ALL of my cubs in tow, and had a nice long discussion with the principal, assistant principal and Sammie and I talked with the counselor. This Mama Bear will not have this continue.

Now, for the constant, daily, pain. Lilah is stared at, kids point, parents rush by us in the grocery store like we have the plague. I hear their children ask questions about her eyes, her patch, her braces, how she looks, and the parents"hush" them and keep walking. I do my best to say, "Lilah is visually impaired. She cannot see like you and I do, but she is still a gift from God." I reassure the parents, who are obviously uncomfortable that their child asked the question, that Lilah wants and needs people to talk to her and that it is better to ask questions than stare, point, and make fun of her.

Recently, the dreaded "R" word has been said in my presence about my girl. "is she retarded?" My skin begins to boil. The kids in the girls school who point, whisper, and stare, and I hear the "retard" word again.

Tthe R word MUST go!! Its like this: do you think that the "n" word is funny? Really? Do you?Its not. No matter the context, it is NOT funny. It is a derogatory word used to put others down and hurt them. It makes me sad to hear two African American young men calling each other that name. Its not funny. Just like the "r" word should NEVER be used in a joke or to make fun of something or someone. Even if you are referring to yourself in the "Man, am I that retarded?!" See, no matter the context, it is used to hurt someone or put them down. Have you ever seen 2 children with special needs joking with each other saying, "hey retard. Yo, retard, what's up?" No, you haven't because it isn't funny. So, why would a man or women of color use a word that brings about such pain???? Beats me!

This "r" word needs to be removed from the vocabulary in our homes, work, cars, and schools. Our children need to be educated about how to speak to people. Parents, stop what you are doing and spend some time with your children. Help them understand that what they say can cause very painful things to happen.

A 14 year old girl in our community took her own life. No one really knows exactly why. But, she was BEAUTIFUL. She seemed to have it "all together." What was said to her, and when at what age, that made her think she wasn't good enough to be in this world? What happened to her that drove her to do something that has now impacted her older sister, who found her, and her mother...forever? What is going on in our culture that our children are hurting each other and themselves? What are we,as parents, missing that we are allowing them to get "hurt" like this? How can we as parents, friends, uncles, aunts, teachers, whomever be MORE involved in the next generations lives to help them LOVE each other AND themselves?

I have decided to take my hurt, anger, frustration, and pain and turn it into action. Will you partner with this MAMA BEAR and help me change the course of our childrens future? Will you do your VERY best to remove certain words and phrases from your vocabulary? Will you stand up for Lilah and ask your friends and family members not to use the "R" word, no matter the context? I have tried, but each time I ask I am told I am "too sensitive." Well, be that as it may...this sensitive, loving, giving, kind, compassionate, passionate, protective MAMA BEAR will do anything I can to put an end to bullying on all levels!