Eye Surgery #1

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

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!

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

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

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!

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

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

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

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!