Happiness

Saturday night at church as I was about to drop Lilah off I watched several other "toddlers" screaming not wanting to go back with Rosie. (Aaron had already gone to the room where we serve)

When it came time for Lilah's turn. I kissed her and handed her to Rosie. Lilah turned her head around and started to wave to me. Not a cry, complaint, tear...just a smile and a wave.

All the other Moms and Dads watching said, "awww!" And I said, "I love you. Have a fun!"


After Aaron and I finished serving with the 3 year olds, we walked back to go check on Lilah. Through the one way mirror we saw all the "toddlers" playing, crashing cars, pushing buttons, playing with puzzles, running, screaming, etc. But not my Lilah. Lilah was on the floor on her belly, cheek smashed to the floor, as she normally does when it is too loud, too much activity, too quiet...anything that is "too much." Lilah was trying to "self soothe" in the midst of the chaos.


Aaron and I stared at her through the glass. No one could see us. We watched all these children play..and we stared at our girl. We LONGED for her to get up, play, be a part of it all, do those "normal" toddler things...but she wasn't. She was just laying there. See Lilah does this when she is over stimulated or when she's not being spoken to one on one. This is just part of "her."


I sat in church during the worship service thinking about what I saw. I began to get sad. I could feel it. I could feel the questions start to rise again.
"Why her?"
"Why does she have to be so different?"
"Why does she have to be the child that looks and acts different?"

WHAT was I doing?

I completely let an AMAZING moment skip out of my head for a brief 3 minutes we watched her. I let 3 minutes change my mood and my thoughts. I allowed Satan to work in my head and make me question everything. Right there in church. WHY? Why did I do that?

because I am human...and sometimes it hurts

But, I praised God for all that he has done, and prayed during Cam talking. And God reminded me of my girl. Of that moment just two hours earlier when Lilah was the one calm child going back to play...


and that is when I leaned over to Aaron and whispered in his ear what happened. And he smiled. That smile on his face. The joy of knowing his daughter waved at his wife, without prompting...reminded me to focus on what Lilah DOES do...

Lilah is happy. She is by far the happiest child...ever! She doesn't know anything other than she is LOVED and loves us in return.

I didn't let Satan win that night. I might have let him creep in my head...maybe I allowed him to control my thoughts for longer than I should have. BUT, I knew what to do. I prayed about it. I praised God for ALL of my blessings, even in the midst of uncertainty, and you know what....

When I waited in line to pick Lilah up and saw her coming around the corner on Rosie's hip....she was smiling...and shaking her legs and arms giggling and dancing with excitement because she knew she was about to see her Mama.

And my heart MELTED!

and all the Mommies behind me went..."aww!"

Happiness!! Happiness is LILAH!

And a special HAPPY 36th Birthday to Aaron today!

Cane Introduction

Today Lilah's O&M specialist introduced her to the White Cane. (click on the word to read all about white cane)

I remember when Lilah was diagnosed, and Dr.D told us Lilah would be blind...I was so fearful for SO many things. I don't know why I was so scared. So nervous. Fear. That's right. Fear of the unknown. Fear of a life other than what I had dreamed for my child.

Today, I see life very differently.

I am not scared for Lilah. I want the best for her. I want Lilah to be able to be as independent as possible and live life to the fullest.

When Yinka, Lilah's O&M specialist, (click on O&M to read what she does for Lilah)told me a few months ago that Lilah would need to be cane trained, braille trained, and probably have a guide dog, I didn't understand why. I thought, "But she's not blind." See, Yinka explained to me that even if Lilah may not need the cane all the time, she would need it sometimes due to her depth perception being off. Lilah's two different visual impairments don't allow her to see the world like you and I do....but she can see something. Yinka has opened my eyes to many things about Lilah. She has explained to me that Lilah may not need all of these items, but she should be trained, in case she does. The eyes can get worse. She may one day be "in the dark." She may one day have amazing vision. We just never know. It really is in God's hands, BUT...my job is to educate myself and Lilah...and guide her so that one day she is able to do things on her on...if possible.


Today when Yinka walked in I saw the cutest little white can sticking out of her bag. I was SO excited! I couldn't wait to see what Lilah thought of it.


Instead of being scared that it would be another "label" in her life. I saw it as FREEDOM!

Freedom for Lilah to be able to touch things in front of her and know that it is coming. Freedom to walk without FEAR. Freedom.

Boy oh boy has this journey changed me!


I grabbed my cell phone first and snapped a picture, then I grabbed my camera. Before I could change my settings...she dropped it. But, I was able to at least share this image with you of how cute it is. This one isn't Lilah's. But...it gives you an idea what a cane her size would look like. Yinka even told me that they make them MUCH smaller than this. Do you see what I see? A WORLD of possibilities just waiting for my girl!

Thank you, God, for Yinka, the white cane, and for learning each day what will help my girl!

The future is SO bright for Lilah!

Just got confirmation..

I promised I would keep you posted....


Lilah's story will be shared at Savannah Christian Church on 2/12/11 and 2/13/11.


As my kids say, "Mommy, you're going to be on the BIG screen." Praying my openness and transparency will help lead others to know HIM like I do.


I invite you all to join us. I will go with you. I will sit next to you...and I will be there to help you with any questions you have. And if I don't know it, I will help you find it, because we can all learn from each other.

HOPE for a future!

After Lilah's diagnosis, at 18 hours old, no one told me of all the things that Lilah COULD be able to do in her lifetime. This blog has allowed me to "meet" so many people that have helped me on my journey.

After asking repetitively for help, for guidance, for information to help Lilah, Barbara (click on her name to view her page) directed me to Richard Favinger's blog. Rich is an awesome legally blind photographer. Yes, you read that right. (click on his name to see his work. Click on the word "blog" after to view his blog) Rich teaches Judo to visually impaired children in Pennsylvania and he also happens to have a great "eye" in photography. Rich gave me LOTS of advice about Lilah, photography, and he also helped me "see" in many more ways than I originally did.

Rich stopped blogging, and commenting as much, and I knew why....he found LOVE!


He "introduced" me to his girlfriend, Kit, through Facebook. Kit is a scuba diver. A blind scuba diver. I was able to "chat" with Kit and learn from her. One of the most simple, but "eye opening" things was when the two were "laughing" on Facebook about Kit "waving around a hot device to straighten her hair, oh and did I mention that she is blind." That little comment opened my eyes to realize that no matter what Lilah would still want to feel beautiful like all girls do. She would want to put make-up on, play with her hair, jewelry and more. I made sure to tell Kit and Rich each time they helped me "see" more clearly for Lilah.

Well, a few months ago, I got a message from Rich that he wanted my advice. I was shocked. Me? Why me? And then I scrolled down the page and saw it....it was a ring. He wanted my thoughts on if I liked the ring choice for Kit. I immediately got goosebumps. "YAY! They are getting engaged!", I thought. I wrote back to Rich several times and told him my thoughts and he told me exactly why he had chosen this ring for her....because she could actually SEE the contrast in it. I was SO honored that he asked for my thoughts. I know that, to him, he was just getting another woman's perspective, but to me...it was so much more.

I had HOPE for Lilah. That one day she would find LOVE and be LOVED in return.

Recently Rich and Kit were interviewed. Click HERE to see it!

Their story made me CRY. Their story brings me such JOY and HOPE for my girl. Not only can she do ANYTHING she wants, but she will also be LOVED...and will someday marry.

Congratulations Rich and Kit! And thank you for bringing such HOPE to me and my family...and to all who read this blog!

More than meets the eye

Look at this picture:

Go back and look again, but this time look longer.

Do you see how strong she is?

Do you see her looking outside?

Do you see her playing with the strings?

Do you see her reflection in the window?

Do you see what I see?

• A beautiful little girl who has defied all odds
• Strong
• Patient
• LOVING
• Sees more with her limited vision than we "fully sighted" people do
• has the softest, most gentle touch
• Will do anything she wants
• is a GIFT from God

I read something this week that changed me.

" Let's restore the hopes and dreams we had for our children before the diagnosis. and do whatever it takes to turn dreams into reality. If we don't dream out-loud for our children, how will they learn to dream for themselves?" Kathie Snow (Disability is natural)

See, when I was pregnant with Lilah I knew nothing of her disability. I didn't know if she would be a boy or a girl. All I knew was that my baby was healthy. We had every test done. Nothing said I was high risk or needed any special "extra tests." The ultrasounds we had never pointed to anything "abnormal." So, I took deep breaths after each test and began my dream for this child...

I was devastated when I learned of her disability at 18 hours old. Why? Why would I be devastated? Because my dream was squashed by the words that came from Dr.D's mouth. I couldn't see or hear anything but the words that he said. I never heard, "but she will be OK" or "this may be a long road, but you will see more than most people" or "she may be blind, but she will live a fulfilling life." There were no words of hope. There was nothing positive. Only the worst. So, I stayed there. I stayed in that place of misery for longer than I should have ever stayed. I look back at that time and wish that I hadn't wasted so much time being so sad. Why was I sad? Why didn't I see the gift I was given? Why did I let a diagnosis consume me? Why? Because I am human. I have human thoughts and emotions. I have dreams and hopes and wishes like we all do. But, I also have a very strong faith that has guided me on this journey. This faith, and my walk with Christ has strengthened so much in the last two years. Lilah was given to me to teach me, to teach my family, to teach us all...

I have changed my perspective. I have changed my thought process. Instead of staying in misery, I choose to stay in HOPE. When something negative is said about Lilah, her future, or what she "is and is not" I am learning to find the good in it. Yes, I admit to being honest and very human and allowing myself time to grieve and be disappointed, but I also choose to see what she IS and CAN rather than what she cannot. I now know what to do to get myself out of the pit of misery and wrong thinking to the place of peace and HOPE. I pray. I ask others to pray...not just for the hope of improvements and growths, and gains, but also for peace and trust in HIM when life isn't what I want. I surround myself with other believers and ask for their guidance. I go to church and praise Him for what He has given me. I praise Him for the miracles, for the things I have learned, for what He has taught me. I praise Him, even when I don't understand and see the bigger picture. Two years after hearing that news, I see why He chose me. I see things in myself that I never saw before. I have chosen to tell Lilah's story over and over and over again to make sure NO other mother feels as lonely, and as sad, and as hopeless as I did. I am determined to tell how the "ball was dropped" and we were left alone in that hospital room. No social worker, no one, NO one prepared us of the road ahead. No one told us that she may be delayed. No one told us of services, or help, or programs, of other parents. Nothing. No information was given to me. So, I am determined to help this system. Instead of sit and complain, I am in action mode. I have shared Lilah's story and she has been in a magazine. (Something Special) I have shared her story with our church. (Her story will be shared on "the BIG screen" as my kids call it, very soon. I promise to share when) I am honestly sharing my heart on this blog. See, God knew that I would be self-less and want to help. He knew I would stop at nothing to make sure NO one ever felt alone again. He knew that I would help fight for other parents, kids, etc so we could all find HOPE. He also knew that when those people thought they were making negative comments about me growing up like, "you never know what Katie will say" is actually a very good thing. You are right. You never know what I will say, and I am loud, and I am honest. And I will share the good news of Christ and what He has done for all to see. See, God made me to be a witness. He gave me Lilah so I could slow down and see Him more.

Today I see Lilah's future as open and free. She may be delayed and slower than most, but that doesn't mean she can't do anything she wants. And she will. I believe in her. I have faith in her. I will do whatever I can to help her achieve her dream. And I will be grateful for her everyday of my life!

If THIS doesn't make you smile, then I don't know what will...

Beatboxing Lilah

Isn't she just the CUTEST thing?