"May the God of HOPE fill you with all joy and peace as you trust him, so that you may overflow with hope by the power of the holy spirit."

~Romans 15:13

Saturday, May 28, 2011

Miracles can happen.....

if you JUST believe!

Do you remember her eyes 30 months ago when she was born?

Do you remember how white they were?

Do you remember that I pleaded, begged, and questioned God?

Do you remember that I could not understand WHY?

Do you remember that I poured out my faith on this blog for all to see?

Do you remember me asking for prayers DAILY?

Do you want to see how FAR her eyes have come without surgery?

Do you want to see a living miracle?

These pictures are from this morning 5-28-11.

I chose not to edit them. I wanted you to see what I see. Raw.

This is Lilah's right eye. The "worse" of the two. The eye we were told she would probably lose.

Not only has patching her eye helped with the "turning" of it. The patching has helped her brain remember it is there and not "shut it off."

Do you see the DARK pupil?

Do you see that the "white" cloudy area is almost non-existent?
Lilah functions with this patch on for 5 hours a day. I have done many "tests" at home to see what I think she can see out of her right eye alone. And let me tell you. She can reach for cheerios, goldfish and more. WITH her patch on. Even though her depth perception is way off due to the two different eye conditions, Lilah is still a -ALMOST-walking, attempting to talk, miracle.

If you didn't believe in miracles before...

Maybe you do now!


Friday, May 27, 2011

Lilah singing Hosanna..

Lilah works SO hard at all of her therapies. VERY, very hard. She is bombarded with new techniques. New skills. Things that we all take SO for granted, that come SO easy for others, take her double or even triple the time.And that is just fine. She is learning them!
Lilah has been working SO hard in speech therapy. I wanted to share what she does when she hears this song. Listen to her sounds. Watch her "watch" the video and make the sounds with her mouth. Watch how she forms her lips. The best part is what song she LOVES to sing with. Before you start the video, please push pause(ll) on the right of your screen. I don't want you to miss any of this. Trust me, it is worth it.
HOSANNA in the HIGHEST for sure. Thank you, God, for the sounds from my sweet angel! Thank you ALL for the prayers for Lilah,and our family, they are WORKING!

Tuesday, May 24, 2011

Requesting Prayers

I believe in the power of prayer.

I believe that when we ask, with all of our heart, trust that He can and He will, the Lord will answer us. Somehow, someway He answers us.

Lilah will be seeing Dr. Greenberg again in August. This next visit is going to be more difficult. See, my little fighter has become quite that...a fighter. She does not like anyone to get near her eyes anymore. I must say, I don't blame her. Every Dr. we visit is so interested in her eyes. The residents and students are just so curious. And I am normally very happy to let them look and examine them, and I tell them of her miracle to help them in their careers. All of that exam time, and the last nasty infection in her right eye, have made Lilah very apprehensive.
This next visit will determine if Lilah needs surgery to correct her "lazy" right eye. The patching IS working, so much so that we must patch 5 hours a day. Now, most Mom's I talk to HATE patching...and I do too. BUT, if that little nuisance, in the form of a cute little bandaid, can prevent her from surgery...she WILL wear it. Lilah fights me and fights me, but I win, each time, and we get that 5 hours in. Some days 6! I am determined to do all I can to help my girl.
BUT, I cannot do this on my own strength. I cannot do this alone. I need God to help me. I need prayer warriors to pray with me to intercede on her behalf.
To date Lilah has not had surgery on her eyes. PRAISE GOD! for that. To date she has never had a transplant, muscle repair, or EUA(exam under anesthesia). Lilah IS a modern day miracle.

I believe this miracle can continue. I need your help.

Will you commit to pray for Lilah, for her eyes, for her continued progress in therapies?

August 10th we go back to Atlanta to determine if she will need the muscle repair surgery and an EUA will probably be scheduled. An EUA for most people would be easy. And it is, but for our family that means more time of Mommy and Daddy away from Alex, Sammie, and Eli. That means finding a hotel in Atlanta to stay in the night before. More time for Aaron off of work, more time for someone else.. whoever watches the older three to take off of work. It isn't just an easy, go under, look in her eyes and see, then go home. With a family our size, it takes lots and lots of planning. There are a lot of aspects to our family life that are involved. We are a family first and foremost that is our ministry... the six people in our home. Having a child with needs is hard on all the family. We do our best to balance the time we spend with and for Lilah with Alex, Sammie, and Eli too. ANd the time we spend together keeping our marriage alive.

So here is my request...

I come to you asking for your healing mercies, again. I ask that you please keep Lilah's eyes straight. I ask that you continue to clear her eyes and allow Dr. Greenberg to be as shocked and impressed with her red reflexes as Dr. Cossio was. Lord, I believe in your power. I believe in your miracles. I believe that you have a plan for Lilah and that you are using her to reach so many. I am asking that you, Lord, would use your hands, these patches, and the healing hands of others to prevent any surgery from her eyes. Lord, I also trust that if it be your will that she need these procedures that you have Lilah safely in your grip. Lord, I ask that you grant me your peace and help me to lay comfortably in your arms knowing that you love Lilah so much and you created her. Lord, I thank you for the miracles you have done in her life. I thank you for the lives you have touched through Lilah. I thank you for the miracles you have yet to show through my girl. I love you, Lord, and am so grateful for you.
Thank you.

Many thanks to all who prayed this prayer, and many others like it, on Lilah's and my behalf. This road, this journey, is not easy, but with God and partners in prayer, it is much less lonely.
Thank you from the bottom of my heart.
Much Love,

Friday, May 20, 2011

Watch THIS!

Lilah was standing at my computer, turned around, grabbed on to the stool and did this:
Thank God for the video camera on my phone and for HIS awesome promises!

Wednesday, May 18, 2011

Hi, my name is Lilah

....and I am very happy with who I am. I know you might be scared of me because I look different from most other children. I know you may not know what to say around me, and that is OK. Just know that I need you in my life. I need you to talk to me. I need you to love me. I need you to love my family. I need you to understand that my Mommy loves me very much and when she is fighting for me she may do things that you do not understand. She may cry sometimes. She may ask God why. My Mommy loves me with all of her heart and wants you to love me too. My Mommy has worked really hard for me. I know she will continue to work hard for me. She will fight for me and will not stop until the world can treat me like Jesus does. I am beautiful. My Mommy tells me about a million times a day. I believe her because I smile like this when she says it....

Please get to know me. I take a little bit more patience than other children. I am not as fast as others. I am 29.5 months old and cannot walk un-assisted, yet. I cannot speak in words or phrases, yet, but I will do those things...someday. I am happy being me. I want you to be happy around me. Please do not be scared of me. God isn't. He made me JUST as I am. He planned me to be unique. He planned me to be a miracle. An unexplained birth, with an unexplained diagnosis, with two very rare visual impairments. If you see me on my Mama's hip, in the grocery store, at church, or at my home...please talk to me. Give me a few minutes to respond. I may smile. I may stare. My eyes don't work like yours do, so it takes me just a few minutes to understand what your face looks like. I can see you. Just not like my Mommy can.
I can hear really well. Please don't shout around me. Because my eyes don't work well, my ears work better than yours.
If my Mommy tells you about me, listen. She wants you to know me. I want you to know me. I want to feel your love. My family needs to feel your love.
I want you to know how much I appreciate you praying for me. My eyes are better because of your prayers. I am getting stronger everyday because of your prayers. I believe in Jesus. My Mommy tells me about Him and how special I am to Him everyday. I am a gift He created just for my Mama.
Please know that I need you in my life. All of you. Each one of you plays a very unique roll in my life, and in the life of my family.
Please know that we all love you very much.
Right now my Mommy is still learning how to care for me. She is trying to learn how to walk this path. She may require a little more love and patience... just like me. God didn't tell her about me. I was a surprise, and so was my diagnosis. Bare with my Mommy and Daddy...they are trying. Know that they love me, and my sisters and brother with all of their heart.
If you get to know me you will find that I have the BEST smile, the cutest giggle, and the tightest hugs. I will spend hours feeling your hair, necklaces, shirt, etc. I love to look at you. Because my eyes move, they take a little bit more time to focus.
Thank you for loving me. Thank you for accepting me. Thank you for loving my family. Above all, thank you for the prayers.

I love you all,

Tuesday, May 17, 2011

Tuesday, May 3, 2011

Beautiful...just beautiful!

Our society ,measures our worth by the money in our account, fame we hold, "labels" that are in our clothes, cars we drive, shoes on our feet, what we look like, how we can "benefit" the world. Our world misses the heart of each person. We focus too much on the outside of a person, rather than the heart of the creation of God.

For the past few months I have been doing an AMAZING study with some remarkable women. The book is Captivating by John and Stasi Eldredge. This book, and the study, have helped me find my WORTH as a woman. We were created in God's image. We are LOVED! Read that again...we are LOVED. YOU are LOVED. Not because of what you do or think or feel or act or give or try...God just loves YOU. He made you...exactly how you are for a reason and He made you in HIS image.

All of us have been hurt. We have been wounded So deeply. Some worse than others. Our hurts are REAL and we need to own them and realize that those hurts do NOT define who we are! Those hurts happened because Satan knows who we were made to be, he fears that we will lead others and we will do God's work and he HATES that. WOW!

This study has made me look at myself differently. Now, do I struggle with my past and the hurts I have. YES. But, I am making a daily effort to read, pray, stay in the scriptures and keep asking God to reveal what He really feels about me. This study has also helped me view my children VERY differently. He made them and gave them to ME for a purpose.

God knew that I would fight tooth and NAIL to help Lilah get what she needs, when she needs it, and how she needs it. God knew I would nurture her heart so she would see her true beauty.
God knew I would love her like no one else. God knew I would give her the love that He gives me. Unconditional love. God knew I would doubt myself, my abilities to do this job, why He gave her to me, what my path is, why I am in Holland, and more. He planned me to be Lilah's Mother because He knew I wouldn't take her for granted.

Satan thought he was defeating me by using people and circumstances to hurt me, but what Satan didn't know was that God had Lilah planned for my future. He was going to use Lilah to show me TRUE beauty and erase the worldly LIES I had believed since I was 7 years old. Lilah was sent, as were all of my children, to rescue me and help me see HIS face and HIS glory. Have I been a perfect Mother? No. Have I messed up in places? yes. Will I mess up again? yes. I am human. Will I get back up everyday and FIGHT until I have nothing left in me? You've got that right!

I look at Lilah and I see PERFECT beauty. I see God's face.

She is happy, curious, content, LOVED, loving, affectionate, unbiased with her hugs and love, she is JOY, she is peace, she is...HOPE!

Thank you, God, for placing this amazing gift in my possession. Thank you for trusting me with her care. I pray that I honor and glorify you.

Thank you, dear Jesus, THANK YOU!


I have had to re-activate the "word verification" due to spam comments. Not what I want to do, but I must keep the hackers and the spammers where they need to be...away from me.

Last year I got some nasty comments that really shook me as a person, Mother, wife, friend, etc.
I changed the "title" of my comment section to Generous Words of Hope to help people understand that a positive word goes a LONG way. I have done several studies and am learning that what others say about me does NOT define who I am...and the truth about me and my heart.

I started this blog to keep others updated on Lilah, release my feelings, find other people and parents out there like me. I have vowed to be honest, and open, allowing my transparency to shine so that God could use me, and Lilah, to reach others out there. This journey can be very, VERY lonely sometimes. As the body of Christ we are the hands, feet, voice, and spirit of HIM. I need to know that I am not alone in this battle. I need to be able to do battle against the evil one and see Christ in it all... even in the midst of very painful moments. I will continue to be truthful no matter what.

I am grateful for the encouragement, support, LOVE, PRAYERS, and positivity.

I love reading your comments and knowing that I am not alone.

Thank you all and sorry for the inconvenience of the word verification.

Sunday, May 1, 2011


About a month ago I received an email from a local photographer. She is not JUST a photographer. She is a legend here in Savannah. Her work speaks for itself!!

Christine Hall sent me an email asking where Lilah went to therapy. She was doing a project for Backus and wanted to take pictures of Lilah. I was BEYOND speechless and immediately said, "YES!"

Christine is not just talented. She is kind, funny, friendly, and SO down-to-earth. I felt like I had reconnected with a long lost best friend when I met her. She, as a person, is truly AMAZING!

We met on a Friday afternoon. Alex and Sammie were at school, so Eli, Lilah and I got to play with Christine. Not only did she capture AMAZING images of Lilah, but she captured the spirit of Eli, and the IMMENSE love I have for Lilah.

Please click HERE to see why I am now crying and in LOVE with Christine!

Hoping we can get together with her for some family portraits SOON!

Thank you, from the BOTTOM of my heart, to the INCREDIBLE Christine Hall!(click in her name to visit her website and see her work)