Uncertainties

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!

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,

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!

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!

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.