Lilah singing Happy Birthday to herself

Happy 4th Birthday, Lilah Hope!

Before I begin to tell you what this miracle has done in the last 4 years, I want to give you a visual of what she did at her birthday celebration at school.

Helped pass out the cups

Prayed before the meal

Oh yes, my girl LOVES Justin Bieber and can sing "Baby"from start to finish

Ate fish sticks

Drank her milk

Made everyone laugh

Laughed and smiled with her friends

And went to the book area and "read" herself a few books

4 years ago today my surprise miracle baby was born. Just a few hours into her sweet life, the specialist came in to examine her eyes. Holding down my innocent infant as her eyes were pronged open, hearing her screams...was not the way I anticipated her life to begin. When the doctor stood up and began to tell me that not only was my child born blind, but that even after multiple corneal transplants and countless other surgeries, "at best" all we could hope for was "one eye" for her to "maybe" see with.

Hope....

That was her middle name long before I knew whether she was a boy or a girl.

Hope...

That is what I have CLUNG to with all of my might these last 4 years.

HOPE...

is what I never gave up on as I prayed and prayed that God would send a miracle.

Hope....

is what I have been given in Lilah.


4 years later, multiple tests, and therapies too many to count....

Lilah is a WALKING, TALKING, and yes...SEEING miracle.


I cannot begin to tell you how grateful I am for her:
*For her beauty. Outward, but more importantly her genuine LOVE of all people
*For her determination and strength
* For her personality that sends me into full belly laughter each day
*For the teacher she is to all
*For the gift she is
*For the MIRACLE God has done in her. To date, Lilah has never had a transplant on her eyes. She has had one Strabismus surgery to straighten her right eye. THIS fact is only explained by the GRACE of God. Lilah sees more today than was ever promised by this world.
* For the days I wept never knowing if she would see, how I would teach her, help her, how I would fight for her, after results of tests came in with more rare "diagnosis", for the pain that made me DIG DEEP inside and find the fighter I am....for myself, for my family, for my friends.... for HER.

Lilah,
I sit here with tears welling in my eyes at the gratitude I have for you in my life. You are a true example of love, compassion, determination, perseverance, and JOY. I am so very proud of you. I am so honored to be YOUR Mother. I am so blessed by what you teach me, and others, on a daily basis.
I will fight for you all the days of my life. I will be eternally grateful for what you have taught me. Thank you for the most incredible 4 years.
I love you Lilah Bird!
Mommy

Happy 4th Birthday, Lilah!

Thankful

Today I am thankful for vision.

For it was never promised. It was only "hoped" for.

I am thankful for the things my Lilah CAN see. I am thankful for the things she CAN do.


A few weeks ago at a birthday party, Lilah saw what she wanted. So, I laid down on the grass with my camera and captured her in action.

She saw exactly what she wanted.

Unassisted she walked. Determined to get on the swing.

And she did.


The next image I captured is one of my favorites.

Lilah is loved by so many. Ashley is one of the many. Ashley is a blessing to me. She has a heart of gold. I am thankful for her love and devotion to my sweet Lilah.

Perception...

Yesterday I took a picture with my phone to try to help others understand what Lilah sees.

 I get the same question almost daily:

"What can she see?"

Well, Lilah is an emerging speaker who is daily developing her speech. So, I don't know exactly..yet. She cannot tell me the answer to that from her eyes. Not yet.

But, I can watch her eyes, see how she pulls items in to her face and examines them. I have also paid close attention when doctors or anyone with knowledge about the eyes begins to speak. I want to know what my girl sees and how this life is processed for her.

This is what I came up with...

Now, her vision could be better or worse than this image.

But, I think this helps give a bigger understanding as to how Lilah views this world with her eyes.

Now, as soon as I typed that the memories came flooding back to me of posts almost 4 years ago when I wept at my child being born blind. At what the doctors said. At the prognosis. At the thought of transplants. At how MAD I was with God for "doing this" to my child.

Boy, haven't "I" changed?!

I am not mad, at all, with God. I am actually quite emotional on a daily basis about my miracle. I post and post and post on Facebook about all the things my sweet girl does. I am utterly PROUD of the woman she is. And she isn't even 4...yet ( this Sunday!)

Lilah has never had a transplant. Lilah is growing and learning each day. Lilah's smile, her laughter, her joy radiates from her and she makes each and every one of us a better person. God has given me a gift. God has given me this exceptional child to help change our world.

Lilah is always happy. Ever joyful. Dancing. Singing. Loving.

Don't you think, even just for a minute, that maybe SHE is the lucky one? Her limited vision makes her other senses greater. She smells better, listens more carefully, feels with more precision. She loves deeply...everyone she encounters.

She is more Christ-like than most of us have ever hoped to be. And the "ah ha" moment just went off... didn't it?! That is how we are suppose to be to each other...
"listen more, love deeper..."

Thank you, God, for blessing ME with better "vision" through Lilah.

Lilah singing the ENTIRE ABCs.

https://www.youtube.com/watch?v=2EaV-f-gH_c&list=HL1353334864&feature=mh_lolz



I cannot begin to say thank you enough. To all of her past and present TEAM members. Thank you to all who have prayed and continue to pray for her. Thank you for those that put their time and effort into helping, loving, and supporting her. Thank you, God, for THIS gift!

Twinkle, Twinkle...

...is incredibly beautiful when coming out of the mouth of a child who wants nothing more than to communicate with you

Click HERE!

Do you see and hear the effort it takes for her to sing each "word?"


Lilah Hope has taught me so much about pushing HARD, paying attention, listening and NEVER giving up.

How can you NOT want to fight hard for yourself and those you love( and love you back) when you watch her FIGHT to do tasks (talk,walk, speak, listen, understand, eat) that we take SO for granted?

I am utterly grateful that God sent her to guide and lead us all. She is such a blessing!

And if you caught that first part...

HUGE Congratulations to my sister, Allison, her husband Christian, and their son, CJ as they welcomed a baby girl into their family EARLY this morning.  (I really wish New England was closer to GA.) We love you guys and are SO excited to meet her!

Lilah's Fall Festival at school

 I cannot begin to tell you how GRATEFUL I am to Lilah's school for loving her and accepting her JUST as she is. Lilah's teacher, Mrs. Amy J, has been a blessing to me and my girl.

 

“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

The people she touches and the lives she is impacting...Lilah Hope is a GIFT from Heaven.

Thank you, God, for my muse, my blessing, my miracle.

BUZZ on beautiful bumblebee!

Look at how FAR I have come

 

God ROCKS!

Up and running AGAIN!

For over two months I have not been able to access Lilah's website... that I created. It was pretty devastating for me. I decided to take it back to a blogspot and allow the domain "Lilah Hope" to go...for now.
Having Lilah has made me realize that there are some things you can control and some things you just HAVE to let go.

Many of you follow Lilah's progress on my personal Facebook page. I am so grateful that you have been able to keep up with me and Lilah, my kids, pray for us, and see her progress. For those that have not been able to, I apologize you were unable to keep up.

A few things have changed in our life:

-From my last post you a few months ago, you were probably able to figure out that Aaron and I are no longer married.( I will not write about that here.) I will continue to keep this blog about Lilah, the truth about my feelings as her Mother,what she does for others, how God uses her, etc.

-After the divorce, I changed my business name to reflect what it is all about...me supporting my kids. I am still working on a website, but for those that are on Facebook. Please 'like" my page here:
Kathryn Hope Photography


And...

I have been training to run the Rock n Roll Marathon again this year. Last year was the completion of my circle that I began for Lilah. This year, I am running for me...and yes, my babies. To show them that even though life gets hard, you can keep pushing and fighting and never give up. Just like life, a marathon is a journey and takes a LOT of work, determination, faith, heart and hope. Please pray for me to complete the race, uninjured, in 14 days. Nov. 3...26.2miles...Philippians 4;13!

Now that I am back up and running. I cannot wait to share so much of Lilah's progress...
*She's almost running
*Using her white cane like a pro(only been a few weeks in her hand)
*Singing up a storm(she LOVES Justin Bieber and Maroon 5)
*She started school. A typically functioning private preschool 4 days a week.
*She still has therapy DAILY
*is talking better
*her sense of humor is awesome. She is a RIOT!
...and she STILL makes an impact everywhere she goes.

Pictures and videos will be posted soon.

SO grateful to be able to post again...freely!

Faith

Its been said that faith isn't faith until its ALL you're holding on to.

Last night at church the topic was faith and big risks. The pastor, Vince,  from Verve Church spoke last night. Verve is a church ON the strip in Las Vegas. They sure know a thing or two about faith and big risks; don't you think?!

So, Vince talked about how most Christians live life playing it safe because it is too comfortable in the safe zone. Not many want to really follow the call on their heart by God because of fear.

"Risk leads to fear and fear leads to faith." Vince. Well, my FEAR of being honest about where I am has led me to not post or share on here in a LONG time. Today I am stepping out in FAITH. Praying I can help someone....somehow.

Now, I have always been ultra transparent here. VERY. I am walking out in FAITH and risking MUCH by sharing a part of my testimony that many don't know.

I will be the same transparent person today... while using some discernment.

5 years ago something VERY painful happened to me in my marriage. Two events actually. One was heart wrenching emotionally. The other was physically painful. Both events tore me apart. Both events made me question everything I thought I knew was "safe."

I poured into my, then, small group. They saw my heart breaking. They saw the aftermaths the next morning after "the incident." What they really didn't see was the woman that was telling the story didn't realize she was worth enough to walk away from what was causing her such pain and heart ache.

I agreed to forgive and move on...Grateful I did because God sent me Lilah.

What I questioned God for...her unknown disability, WHY would He "do this" to my child....has become a HUGE revelation in the last 3.5 years of her life.

While questioning God WHY, crying daily, I watched my child struggle to do tasks that typically functioning people take SO for granted....I had a revelation: if I expect Lilah to fight HARD physically and emotionally, why do I expect anything less for myself?

Going on the walk to Emmaus, then doing the Captivating study with Barbara Feemster at Savannah Christian Church were both key to my healing.

Also, attempting things that I never thought I would ever do physically: running my first 5K, 10K, half marathon then full marathon.  a 70# total weight loss. To date: I have run 3 half marathons, 2 mud runs, many 5Ks and 10Ks and am training for my second full marathon.

I have come to understand that this new chapter of my life: single Mom of 4 kids will be harder than all of those things combined. I have always done things alone and by myself, but this time it will require me to figure out a way to be financially independent.

I plan to finish my degree. In what? I am not quite sure.

I pray my photography business will bloom.

Just like the last 3.5 years took time, sweat, heart ache, and pain...this new chapter has already had LOTS of that.

What it requires more and more and MORE of is .... FAITH.

I look at Lilah EVERY DAY and thank God for her. If God hadn't sent her to me I would have NEVER become the woman I am today. Lilah was sent to show me my worth, help me release my demons, and allow me to have courage to share my story to help others.

God is pretty cool when He does that.

Board breaking Lilah

Yesterday all of my children were a part of the break-a-thon for the Karate school. I watched as each one of my babies broke boards and attempt to do something they never had before. I was so proud. I am sure you could hear my screams across the country ;)

The one that made the MOST impact was Lilah.

Here she is walking around happily in the parking lot of the school.

Each student at the school lined up and broke their 5 boards. 

I told Carson that I thought Lilah should wait a little while until it wasn't so loud. This enabled me to take pictures of as many of the students as I could breaking boards. Most of the parents and students walked back out to the parking lot once they were done breaking their 5. But, slowly, the room began to fill again.

With no one else on the mat, Carson had Lilah come up and break boards. 

I asked another Mom, and fellow photographer if she minded using my camera to capture Lilah breaking boards while I assisted Lilah. 

Thank you, Teresa, for capturing these for me.

 Lilah did such a great job. She got a little startled when the crowd cheered so loud for her. But, I refused to let her quit.

The greatest part of all of this was that God used Lilah in that Karate school.

Determination. Strength. Confidence. Beauty. LOVE. Family. Encouragement. HOPE!

Thank you to Derrick Strickland for capturing it on video. Click HERE to watch!

I am so honored to be Lilah's mother and get the privilege to witness God work each day in her life and in the lives of others through her. I am very blessed!

An answer to a prayer and some updates (short video included)

Many of you will remember that I have been praying that Lilah would be able to walk on the beach. For some that may seem as a strange request to God, but not to me. See, for me....the beach has always been the place I can go to and really feel God's presence. I know He is there. I hear His voice. I feel His peace.

I wanted to watch Lilah walk on the sand that He created, see her enjoy those crystals squish between her toes. There is something that is just breathtaking about it.

My prayer was answered...



I keep watching this video over and over.

I took it Monday.

Today at Lilah's therapy I was told how Lilah's evaluations have come out.

Lilah is now at a 20-24m developmental level.

Lilah is 3.5 years old.

I remember when this would have stung SO bad. I remember when this would have made me weep uncontrollably. But, as God would have it...I am gratefully at a MUCH different place.

I no longer look at how "globally delayed" she is. I don't focus on how far behind her peers she is.

Nope!

No way!

Today, I focus my mind, my heart, my thoughts on how FAR my miracle has come.

I thank God for each and every new thing she does.

Just this morning alone, Lilah greeted me with "mo nin, Mom Ee." That is "Mornin', Mommy" for those who don't speak Lilah.

Those two words put my day into a great start.

I have changed my perspective. Wait...GOD has changed my perspective. God sent Lilah HOPE to my life to show me just how STRONG I am because of HIM and what I CAN do with HIS help.

Each day I look at Lilah and I make the decision to see her incredible spirit, her determination, her heart, her love, her JOY, and her PEACE. I feel as if I see God, himself, in her eyes.

I am so grateful that God has given me Lilah to help me see that we should appreciate and be present in each moment. That our greatest gifts are not the ones that come from a monetary form. Our greatest gifts are in the blessings of LOVE and laughter all around us.

Today has been a great day.

My girl is improving. She hasn't hit a plateau. She has improved in each area: speech, occupational, and physical.

Lilah shines God's light for ALL to see.

She is a light in this dark world.

Thank God for HER!

Want to put a SMILE on your face?

Push pause on the music on the side and WATCH this!



Wasn't that worth it?!!

Can you see why I am SO blessed and happy because she is in my life?

She has taught me SO much!

Thank God for Lilah HOPE!

Lilah in the morning

To hear her beautiful voice, just scroll over and push pause on the music



I think a little Lilah in the morning is good for the soul. Who am I kidding, Lilah ALL day is good for the soul!

Thank you, God, for the child who has taught me so much!

Changes

Many changes are happening in my home.

Some of them are pretty raw and painful, but others have been a beautiful blessing.

I am only going to share the blessing right now. I will continue to be as open and transparent with you all about my walk with Christ, but the other things I must discern not to share at the present time.

Lilah has blossomed like never before.

Just this morning as I was laying in my bed reading Jeremiah 29:12-14, I had been praying God would help me give Him complete control over all in my life. I prayed that I wanted to be obedient to Him first in ALL I do. A HUGE sense of peace washed over me as I heard Lilah's sweet voice on the monitor, "up abo da worl." My sweet little miracle was singing Twinkle, Twinkle Little Star to herself. It was as if God said, "Katie, I am above this world. I see it all. I have this all in MY grip. Trust me."

So, I prayed. Again. For Jesus to help me to trust Him even when I cannot see what His path and plans are.

As I walked down the hall to Lilah's room, Eli asked if he could go "wake her up." I said, "Sure, buddy."

I walked into Lilah's room, sat on her bed where Eli was snuggling sweetly with her. I said, "Lilah, say hi to Eli."

And that beautiful miracle, turned her head to her brother, opened her mouth and said, "Hiiii E I"

Oh, goodness....

My eyes filled with tears.

Lilah loves her protective, supportive, courageous, hero brother SO much.

She trusts him. She knows he loves her.

You know, I must do that with Jesus.

I MUST trust Him.

I cannot control how other people behave, react, respond, but I CAN choose to lay my life in HIS hands and ask HIM to open the windows that HE wants...and close the doors to pathways that lead far away from His purpose.

Obedience to Christ, in all areas of our lives, means that we follow Him even when we don't want to. Satan will try to tempt us with anything to keep us from Jesus. He will use people, things, money, greed, power...ANYTHING. We can be tricked to believing that the blessing is from Jesus if our feet aren't FIRMLY on God. We only learn to decipher the TRUTH when we spend time with God each day. We GROW in Jesus when we read, study, ask, and choose to follow HIM fully.

We must lay down our OLD ways. Lay them down each and EVERY day. We must ask Jesus to give us the strength to NEVER pick that old habit back up. When we do this, when we make the conscious choice to live differently, love differently, stop worrying about what everyone else thinks, and focus all of our life work to glorifying God first...BLESSINGS come.

Many of you may feel that blessings are financial because that is your love language or that is how you see a blessing. But, our idea of a blessing is NOT God's idea.

MY blessings have NOT been financial as of late.

MY blessings have come in lots of tears, BUT also in improvements in Lilah globally, my children's behavior, their trust in me, their confiding in me like never before, their understanding that life is not what we WANT it, but what we make of it.

I feel VERY blessed right now. Even in the thick of a MASSIVE storm.

I choose to smile and laugh each day. I choose to see Jesus in my kids faces. I choose to have FUN. I choose to dance in the rain and allow myself to be who I am...a princess of the King.

Changes can be gifts....if we choose to see them that way.

Lilah's improvements in speech!

I promise I haven't fallen off the face of the earth. Here is an update of how much progress Lilah has made in her speech.


When you watch this and listen to her beautiful voice, didn't you get chills?!

God is SO awesome!

Preschool "Trial"

On Monday and Wednesday of this past week Lilah spent some time in the 3 year old preschool class at Bloomingdale First Baptist. If you will remember, Penny, the director of the preschool told me that the church would love to have her, that they would give her a chance, but that if it didn't work out that we at least tried. She also said that she would even let her come and be a part of the class to see how she did and what she needed to work on to be class ready for September.

Monday Lilah spent about an hour in Ms. Amy's class. She painted, played with the other, "typically functioning" 3/4 year olds, and she loved each minute. Before she left the kids were asking the teacher when she would come back.

Wednesday Lilah had her second trial day. It was their Music Therapy day. Penny thought it would be a great experience for Lilah, and we could see how she interacted in the larger groups.

The Music Therapist was great. She rolled out different colored eggs to the kids that were filled to make noise when you shook them. She would play her guitar and ask the children to shake the egg when she called out a specific color. Lilah LOVED this!

As you can see, Lilah fit right in and bonded with the other children. Actually, the little girl to Lilah's left with the pink bow, clung to her like glue on Monday and Wednesday.
Then the Music teacher allowed each child to play on the bongo drum as they sang the "bye, bye" song.
I might have to invest to get this Music Therapist to come to my home to serve Lilah on a private basis. She was AWESOME!
Penny called me the night before and asked me if I wouldn't mind taking a picture for her when I came, so after the music therapy, we walked over to the sanctuary and I took some photographs for the school. (I cannot share those right now. They are a surprise)

After that Penny asked me if I wanted to try Lilah at snack time. She said they were having peaches. I said, "Lilah will LOVE that."

Here she is at the table with the other children during snack time.
Just one of the girls. LOVING school!
I cannot even begin to tell you how it warmed my heart to see my miracle like this.
Then Ms. Amy said they were going to go on the playground. She invited us to join them. The following images will bring tears to your eyes...even if you aren't a Lilah follower.

As you can tell Lilah has "kinesio tape" on her thighs. It is to help her muscles move more correctly. (I even use it for my plantar fasciitis. Its AWESOME!)


Ok. This right here. This move....
Took MONTHS at therapy to understand, perfect, gain strength, and lose the fear of. Lilah climbed up the stairs over and over ON HER OWN like she had been doing it for YEARS.
NOTHING stopped her.
She had SUCH a good time. Check out how HARD she played. The teachers looked at me when she slid down the slide and was covered in dirt. I said, "I am not mad because of the dirt. I LOVE this! She has worked SO hard to be able to play like this. I LOVE seeing the dirty knees and shoes. THIS is awesome!"
The wet slides, from the rain the previous night, didn't stop her. She was a MESS, but I LOVED it. Even the dirty water dripping from her dress!
Lilah even climbed up and slid down the "BIG" slide that the teachers told me the "normal" 3 year olds are too scared to try at first. Lilah has NO fear. Lilah is fighting and trying and pushing hard in this life.

As I watched Lilah play, was taking pictures happily, watching her LOVE this experience, Penny walked out the door and came over to me.

This is what she said, "I see no reason why she wouldn't shouldn't be in the school. Go ahead and register her for next year." My eyes filled with tears. I immediately stood up, hugged her and thanked her over and over.

They LOVE her. They really, really do. They accept her. They WANT her. They see her potential. They see her incredible desire and fight. They see she is a gift from God just like ALL of us are.
Happy Lilah swinging on the BIG swing all by herself. Happy girl LOVING life. Joyous Lilah...

is going to preschool in September!

Jesus,

Thank you for the silver linings you provide. Thank you for giving me the FIGHT to push hard for your blessing you have trusted in my care. Thank you for Bloomingdale First Baptist loving and accepting Lilah. Thank you that YOU, my Father, have provided such blessings daily for me and my children. I love you.

Katie