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.