Video to come...

When the camera cooperates!!!

I have two cameras. One big one that takes AWESOME pictures...with some work.( I am learning.) AND my older, MUCH smaller camera that has a video option. Well....I tried several times to take a video of Lilah smiling and laughing, but the smaller camera refused to work.

SO, if I can get it to work...I promise to post a video of my baby girl laughing and blowing raspberries!

R is for...

• Reason
• Revealing
• Reflection
• Relationship...NOT religion

I have a relationship with my Heavenly Father. Like all relationships...there are good days and there are days when you are complacent. This relationship takes work. The work must be done by me. I must read my Bible. I must spend quiet time in prayer. I must confess my sins to HIM. In a relationship there is honesty, trust, respect and love.

I am often misunderstood. So...I feel the need to correct people who say I am "religious." I wonder if those people have a relationship with Christ? I wonder if those people know HIM as I have come to know HIM. He has forgiven me of my sins.

There really is a difference.

There is a difference between doing things out of habit and living as a servant to the ONE who made us. I have come to understand that I will not be ashamed of how I feel. I have come to learn that I will be unapologetic when it comes to my Heavenly Father. When NO ONE else is there....there HE is!!!! No, I am not preaching this morning, just felt led to help spread the TRUTH.

John 14:6Jesus answered, "I am the way and the truth and the life. No one comes to the Father except through me.

Got questions? Click HERE for answers!

Starting to move

Today I witnessed a little milestone in the making....

• First she was on her back
• Then she was on her side
• After a little work...
• She was on her tummy

Did I just see that ????

Did my baby girl roll on her tummy???

Now, officially it wasn't a "roll." It was more of a slow motion creep type. But, the point is...

She did it!

Happy Half Birthday Lilah!

Lilah is 6 months old today!

What a joy!

What a gift!

What a miracle!

We love you SO much!

Mourning

Last night at church, the East Campus Pastor, Brian Jobe, was doing a sermon on the Paradoxes of the Bible. He mentioned this verse several times. As I listened to him speak I was overcome with emotion. I was overcome by the fact that God was speaking through Brian to get to me.

Matthew 5:4Blessed are those who mourn, for they will be comforted.

I have been mourning. I have been sad. I have asked, "Why?" more times than I can count.

What have I been mourning?

When I was pregnant with Lilah, not knowing whether or not she would be a boy or a girl. Waiting for the day of delivery to find out what God had given us. I prayed, NON STOP, for this baby to be healthy, 10 fingers, 10 toes, 2 arms, 2 legs, 1 heart, 1 brain, 2 kidneys, and be abnormality free. I asked God many times if He knew what He was doing by giving us this surprise pregnancy; this surprise baby. I remember the many comments and questions about why a fourth, why another one, why when Eli was still a baby himself, and how are you guys going to be able to afford it. I remember knowing, really knowing, that God had given us this baby for a purpose greater than I could ever explain. I remember feeling the peace of God when those questions would arise. I knew that this baby would have to help change the world. I knew that this baby was given to me for a reason. That reason I would find out later on.

On the day Lilah was born, and later diagnosed with Peters, I was so surprised. I just knew I was having a boy. Nope, God had other plans. When Lilah was born, the nurses and Dr. Jackson didn't say, "Its a Girl" ( I had dreamed of hearing the "Its a ..." for so long) They said, "There she is." "What"...I thought. I looked down and expected to see boy parts. I expected to see a big boy. Especially since I was SO big. What I saw was a tiny little girl. Helpless, barely crying, and she was skinny. I didn't get what I thought I was going to get.

Am I mourning the loss of a baby boy that I didn't get? NO

I am mourning the loss of the "perfect" baby I thought I was going to have. I am mourning the loss of the thought; the vision in my head. I am mourning the loss of Lilah's vision. I am mourning for Lilah. I am mourning for the times when she will come home and cry because someone has made fun of her...again. I am mourning now because I know that I must be strong for her. I am allowed this period of mourning. I am still adjusting. I am still learning to adapt, cope, and live life as it was given, not as I planned. I am still learning the language of Holland.

Last night, as Brian spoke, I wept. I sobbed. As I held Lilah in my arms I cried uncontrollably. I made a promise to God and to Lilah that I would try to do better. I made a promise to the Lord that I would do my very best each day to trust in HIS plans. I would do my very best not to try to control everything. I would do my best to allow HIM to shape me and mold me as HE has planned.

I am by no means perfect. I am going to make mistakes. I am going to have bad days. I am going to wonder and question. What I can do and will do is be comforted by the love of the Lord. As the verse above states....I will be comforted because God loves me and Lilah...infinitely more.


When Aaron became a Christian (click here for that story) my Mom gave him this poem that was on her wall for many years. I have read it many times, but today it seems SO appropriate.

I revised my play list because I wanted you all to know where my strength comes from. Many people have emailed me and said, "You are so strong." What you all don't know is that sometimes I am dying inside.

The song is RESCUE. "I need YOU Jesus, to come to my rescue....where else can I go?" I cannot go anywhere else. God loves me. God loves Lilah. Exactly how we are!

Some Reassurance

After waiting, and waiting, and waiting.....(God is teaching me patience)

Dr. Lee called at 8:10 this morning. He was SO sweet. He apologized for calling so early. I said, "I have 4 kids. I am up at 5:30." He apologized for not calling sooner. I thanked him for calling...MANY times. I told him I would try to be quick and not take much of his time.

I told him how and when Lilah's eyes are moving. I told him I wasn't sure if the intermittent nystagmus was getting worse. I told him that:

• I notice that even though her left eye is clearer, she can focus better when on her right side. (he said keep her on her right side...to make them stronger)
• When she is on her back looking straight at you her eyes move more.
• She really doesn't like to be on her left side.
• I try to work with her on both sides, but her eyes are stronger when she is facing the right
• I know I am a worried mother, but I am new to having a child with a disability
• I made an appointment with Dr.D and didn't want to go because he is not "hopeful and encouraging like you"

Dr. Lee told me to watch it closely (if he only knew how much I do already) for the next few weeks and if it is worse we would need to bump up the appointment. We talked about the clarity of her left eye and how her right eye could end up a "lazy eye." He said not to go see Dr. D because there "probably isn't really anything he can do." I told him I was taking some of my kids to the pediatrician today (sounds like I have 10 or something) and I would ask him to look. He said that sounded good.

.....2.5 hours later.....

Dr. Cossio walked in the exam room, for Sammie and Eli's well visits, and he said, "How's the baby?" (God is awesome ...how he asked without me telling first)

I said funny you ask, I am worried that her intermittent nystagmus has gotten worse. I told him about Dr. Lee's call, not wanting to see negative Dr.D, and asked if he'd take a look. And he did!

He looked and looked. We turned off the lights and opened the door (Lilah does better in soft light) He looked and looked some more. Dr. Cossio said, "I don't think it's worse." I said, "You don't?" He said, " No."

I told Dr.Cossio that Dr. Lee said her right eye could go lazy, and he said, "I don't think it will. I think she's going to be great!" God, I love this man!

I take Lilah for her 6 month visit in 13 days. I will have him look again. If she hasn't worsened, we will see Dr. Lee on 6-25-09.

So, BIG prayers for....

• her eyes to get stronger and STOP wandering
• clearer right cornea
• Mommy to have peace, strength, and above all TRUST
• Lilah to be healed...completely

By the way...Dr. Cossio mentioned Lilah was BIG...I put her on his scale...20.4lbs!!! My girl may not see well, but her taste buds are GREAT!

Waiting....

Not so patiently. Not so worry-free. Not so positive. Not knowing...it destroys me.

I have yet to hear from the Dr. Lee's office. I will call again this morning. As suggested, thanks Q, I called a made a "date with the devil" (The doctor who diagnosed Lilah) for Friday morning. I will endure his frankness, tell-it-like-it-is, heartless, no bed side manner, etc. for Lilah. I will go to the ends of the earth for her. Next to God, I will go battle for my kids and my husband!

Additional prayers:

• For more patience
• For more wisdom
• For guidance
• For STRENGTH
• For rest...Lilah will be 6 months Monday...no sleep...I am tired
• For PEACE
• For courage to face Dr. D on Friday
• For the right words
• For acceptance...NO, I will not accept defeat...scratch that
• For God's Mercy on Lilah
• For clarity on her eyes, her condition, etc.
• For love...for Dr. D on Friday
• For continued trust

I know that God hears me. I know that he is OK with my fear, anxiety, crying, etc. I know that HE is listening. I pray that HE will help me trust HIM more. I know he knows that right now I am weak. I know HE knows it is OK. I know HE will give me HIS strength. Above all, I know that .....

Jeremiah 29:11For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you HOPE and a future.

Prayer Request...

I sent out last night....

I am sending this email to all of you. Believers and Non-believers. I haven't said anything because I didn't want to scare anyone, however I am begging for VERY specific prayers. Lilah's eyes are beginning to "dance" more. I am full of fear about all of the side effects of her condition.

Father,

I come to you tonight very broken. I am scared for Lilah. I am asking that you, our AWESOME Lord, will hear my heartfelt plea. Please keep Lilah's eyes straight. Please give Lilah YOUR strength to focus and fixate. Please stop the wandering of her eyes. Please help Lilah to see clearer, and for longer periods of time.Please give Lilah YOUR sight, YOUR vision, YOUR eyes to see the wonders of this world. I beg you to give me the strength to endure. I beg you to give me the wisdom and guidance to help Lilah any way I possibly can. I pray that you, oh merciful Lord, will give me the peace and calm to wait patiently for Dr. Lee's call. I ask that you give me the ability to ask Dr. Lee the right questions to help Lilah. Please give me the wisdom and knowledge to help Lilah. Lord, I am asking that you please heal Lilah fully. I trust you and your prefect will. I know that you have this in your hands. I am here to beg for your mercy and grace. I need your peace to get past this hurdle. All the hurdles. PLEASE help Lilah. Please straighten and clear her eyes. Oh Lord, I am so fearful of her future. I am scared that she will be ridiculed for her differences. Her obvious differences. Please give her your strength, wisdom, and above all your love. To love those who will hurt her and make fun of her. Please help me to be the best mother to her; and Alex and Sammie and Eli. Please heal her fully for we know her testimony will be one that can and will reach many. Thank you for hearing my plea. Thank you for loving Lilah and wanting the best for her.
Amen.

THANK YOU!! I believe that prayer works. PLEASE pray for Lilah. I really appreciate this!!!

"I will put my trust in HIM." Hebrews 2:13

Jesus said, "Go Tell of what you have seen and heard.....THE BLIND SEE" Luke 7:22

Worry

I hate to admit how I am feeling today. OK, the last few days. I am worried about Lilah. I am worried that Lilah's eyes are "dancing" more. I am worried that on top of the need for clearer corneas, now she has a nystagmus or strabismus. I am fearful that she is not "focusing and fixating" enough. I am plain SCARED!


I wonder if I am working with her enough. Am I helping her build muscle strength? Am I doing it "right" or am I missing something?


Then, if I do work with her enough, am I leaving the other three out? Am I forgetting them to work with her and help her progress? Am I spending too much time with Lilah and not enough with them? Or am I spending too much time with the other three and not doing enough for Lilah? OR am I doing other things and neglecting my kids?

So, I am trying to give it to GOD. I cannot change what is happening, nor can I change what will happen. All I can do is give it to HIM, ask for HIS help, and TRUST that I am doing the best I can. I am clinging to this verse today:

Who of you by worrying can add a single hour to his life ? Matthew 6:27

SUPPORT...continued

I asked and thank GOD I am finding support. These two women (Lisa and Kristen) are helping me find my way on this journey. I thank the Lord for them. Please click on their names to learn more about them and their beautiful, PERFECT daughters. Today Kristen wrote my feelings exactly!!!!

THANK YOU LISA AND KRISTEN!

Gotta Wear Shades

Mommy and Lilah

The change in her

The top picture was taken at birth 11-25-08

The bottom picture was taken 5-08-09

Five and a half months

At 18 hours of age we were told Lilah would need "multiple corneal transplants" in order to have any vision. We were told "at best" one eye. We were told "God didn't make these eyes right."

Obviously, the doctor didn't know GOD.

God doesn't make accidents.

God doesn't make junk.

God makes miracles.

I believe Lilah is a miracle.

I believe Lilah will give her testimony and lead many to Christ.

I believe, strongly, that the Lord isn't finished with her.

I believe that someday, somehow, by God's grace Lilah will tell me...

"Mommy, your eyes are brown, and my eyes are blue."

My special child

A Special Child
by Sharron Harris

You weren't like other children
And God was well aware,
You'd need a caring family
With love enough to share.

And so he sent you to us
And much to our surprise,
You haven't been a challenge
But a blessing in disguise.

Your winning smiles and laughter
The pleasures you impart,
Far outweigh your special needs
And melt the coldest heart.

We're proud that we've been chosen
To help you learn and grow,
The job that you have brought us
Is more than you can know.

A precious gift from Heaven
A treasure from above,
A child who's taught us many things,
But most of all - real love.

Thank you Kristen and Lisa

Mother's Day

The job of being a Mom.....

The Career of being a Mom.....

The CHOICE to be a MOM

The chance to get to be a Mom...

The desire to be a Mom....

The joys of being a MOM!...

The sacrifice of being a Mom...

The pain of being a Mom....

The heartache of being a Mom...

The BLESSING of being a Mom!

On Mother's Day, I thank God for each of one of my miracles.

Today, as ALL days, I am eternally GRATEFUL!

I am proud to be a MOMMY!!!

I LOVE MY CHILDREN!

I thank the Lord for this AMAZING opportunity!!!

Lilah's story in the Newspaper

"Come, follow me," Jesus said, "and I will make you fishers of men."

Matthew 4:19

I feel truly blessed that Lilah has touched so many. Lilah's story made it into the newspaper.

I thank God for LILAH and the opportunity to be a fisher of men!

Answers...

To my questions!

Tonight Scott, Dr. Lee's assistant, called back and helped to calm my fears.

I asked Scott if it was "OK" to see some "dancing" in her eyes; or if it was a cause for an immediate concern. He said that he told Dr. Lee our concerns when I called and Dr. Lee didn't seem to be overly concerned. Scott said that some "dancing" was "OK."

Scott said we should be concerned if we see Lilah's eyes "dancing" and moving more than usual. An occasional, intermittent movement is OK. I have to make sure her eyes are not constantly wandering.

So, I am going to pray for PEACE. I will be keeping an "eye" on her eyes, but ULTIMATELY I have to give it to God and Trust HIM fully.

My prayer from last post is....not changing.....just happening more frequently!

Waiting....

For Reassurance!

When we were in Atlanta last Thursday Dr. Lee said to watch out for "dancing" of the eyes. I told him that I occasionally see her eyes move awkward while nursing, if she's tired,etc.

I thought I remember him saying that I would notice it ALL the time, but I want to clarify.

I know that this fear is the not what God wants. I know he didn't give Lilah to me for me to worry about every little thing, BUT I am human. I am her Mama. I want the best for her.

So, I am praying. As always!!! But a little bit more right now. I am adding "straight eyes" to my list. I am now praying for:

CLEAR, THIN, STRAIGHT, FULL VISION EYES!!

Sometimes I feel as if Lilah gets past one hurdle and another one is waiting right behind...or I guess in front...of her. Sometimes I pray so much for her eyes, her vision, her sight, her future,etc. (I am going to add peace to my prayers.)

I will NOT stop praying. The Lord is working so many miracles in Lilah. HE is working so many miracles through her, too.

Lord,

Please keep me calm and at peace. Please give me your peace and patience until I hear from DR. Lee. Please arm me with your knowledge to ask the appropriate questions to help identify what I am seeing in her eyes. Lord, I ask that you keep Lilah's eyes straight. I ask for continued clearing of her corneas. I ask that you please give Lilah full use of both of her eyes without any surgical means. I ask that you keep our home free from negativity. I ask for your strength, compassion, grace, mercy, understanding, but above all I ask for complete healing. Thank you for hearing my prayer and those prayers of SO many. I am SO grateful for my family, for my children, for Lilah. Thank you!

Hold on tight

Lilah Bird,

I love the way you hold my hand tighter each day. I love the way you try to focus on my face. I love that you are happy all day long.(Ok...most of the day) I love that you trust me completely. I love that your eyes are blue like your Daddy's. I love that you sing when you hear my voice. I love that you are unique. I love that you are my angel from heaven. I love that I feel closer to God when you are in my arms. I love that I look at you and see pieces of heaven. I love that in five short months I have fallen more in love with you each day. I love that you are you. I thank the Lord for you every minute of my day. I wouldn't want any other baby.I love you so, very, very much!

Mommy

Sweet Kisses

This Says it all....

New Eyes

New Heart

New Life

We have given our life to Christ. In HIM we find these things. My faith in the Lord endures...FOREVER!

Matthew 19:26 "With God all things are possible."