A little taste....

Here is my day, in a nutshell, every Tuesaday.

5:30am wake
5:30-6 devotional and quiet time
6:15-6:45(if a good day) run
6:45-7:30 kids wake, snuggle, breakfast
7:30-8:45 chores, make beds, make lunches, dress four kids, make sure Lilah hasn't taken her patch off and still has her AFOs on
8:45-9:15 drop older three off at their schools
9:20-9:45 drive to Backus on the other side of town
9:45-10 Lilah practices walking into therapy with her walker
10-11 PT with Laura
11-12 OT with Sarah
12-12:15 drive to, hopefully, meet Daddy for a quick lunch
12:15-12:45 lunch
12:45-1:10 drive back home
1:15-2:15 OT with Tara
2:15-2:30 drive to get Eli from school
2:35- 2:45 drive to girls school
2:45- 3:30 wait in carpool line, chat with Eli, hope Lilah catches a few minutes zzzzzzz
3:40 Alex and Sammie get in the car
3:45-3:55 drive home
4-5 homework, start dinner, etc
5-5:30 sneak in a quick run around play time with the older three while Lilah giggles
5:30 dinner
6:15 clean up from dinner, do dishes, try to play with kids
6:45 bath time for kids
7:15 Lilah's bedtime...my snuggle time to read and sing to her...love
7:15-8 read, sing, snuggle to older three
8-10 edit, return emails, etc
10-11 zone out and hope to fall asleep...

Now for those that ask how do I do it....God knows because He gives me the strength.

Honesty

Normally when I take pictures of Lilah, I only display the ones where her eyes are looking at the camera, or ones that show her improvement. Normally, I try to focus on what is improving, rather than what needs "fixing" or "repairing."

The clarity of Lilah's eyes is AMAZING. NO other explanation than God. None. Sorry all atheists and unbelievers...THIS clarity...yep, ALL God!

So, here is a picture I took today that I couldn't wait to share:

I have been trying for months to get THIS shot with Lilah. I have asked MANY of my fellow (much more knowledgeable) photographers about what they think would be the best way to get this shot for Lilah. Understand, Lilah takes more patience, more care, more time to photograph...I am thrilled to show you how GREAT her eyes look!

NOW...for the HONESTY

Many have asked WHY we patch. First we began to patch because Lilah's right eye had barely, if any, clarity, and Dr. Greenberg thought we were going to "lose" her right eye. (meaning, her brain would think it didn't function so it would cut it off from working) So, we patched so that her right eye could focus and work on getting light to it so we could "save" it. Now we patch to keep from having to do surgery on her right eye because it turns in so much. Well, Lilah's right eye is VERY weak. The muscles in her right eye are not strong enough to hold her eye in the proper alignment. I am going to show you what her right eye does when she is tired, its too bright, and/or...sometimes.

I am asking for those of you that follow this blog, that are close to me, that see me FIGHT with Lilah to keep her patch on....to HELP me...her patches will prevent surgery. PLEASE help me PATCH her. PLEASE help me to stop her from taking them off. 5 hours, each and everyday...we patch to TRY to save this eye....The MORE we patch the LESS chance of surgery and the MORE we can fight...

So, without further delay...

She's still beautiful, isn't she?

And YES, that left eye is near PERFECT!

***PLEASE pray. PLEASE for STRENGTH for her right eye. I believe, and KNOW, that prayers change things. Prayers are answered daily. Prayers help us keep our focus on HIM and remove ourselves from it. I believe that HE can and will heal her. LOOK at what HE has already done. Please pray, pass on the prayers. If patching can prevent surgery, or the need for multiple surgeries, than why not? Thank you, in advance, for the prayers...whether they are answered with a yes or a no. I know that the Lord will use Lilah for HIS greater good***

Lilah's Story is in a Magazine!

I am thrilled to announce that Lilah's story has been told in a magazine here locally.

You can read a digital copy online at

www.somethingspecialmagazine.com

She is in the December issue. Follow the instructions and get your tissues handy!

Thank you SO much, Katrina, for starting this magazine. Thank you, Avis, for writing it SO beautifully!

I am determined no other Mama will feel alone in this journey!

Happy 2nd Birthday Lilah!

Two years ago today my life changed...forever. I left Italy and landed in Holland.



Today I can tell you all the wonderful things about life in Holland...

Lilah is a JOY!
Lilah is loving.
Lilah gives the BEST hugs...ever. She wraps her little arms around your neck and squeezes so tight.
Lilah makes you smile.
Lilah LOVES to dance.
Lilah is peaceful, patient, determined.
Lilah studies you intently so that she will understand you more. Be honest, who in your life studies you, watches you, and notices every detail? Lilah does.

When you're visually impaired and life takes more time to understand, you tend to be more of a thinker and an observer than a talker and a doer. My Lilah is a thinker. She studies you with her eyes and her fingers and she takes time to make her assessment of you. Couldn't we ALL benefit from being more like Lilah?

We celebrated Lilah's 2nd Birthday with a few friends and family. Nothing big or over the top. Just those that have been there from the beginning. Lilah got passed around, loved on, snuggled, she played, crawled, and giggled.

We decided to give the "smash cake" another go, because she wasn't that aware and into it last year.

Look at that beautiful girl after we helped her blow out her candles!

Her sisters and brother really helped direct her and encourage her to eat it. They are ALAWAYS there for her. They LOVE her, play with her, encourage her, and support her.

Alex even decided to help her smash it!

Lilah wanted to share with us all. SUCH a sweetheart!

Lilah,

Every moment of everyday I thank God for you. What a blessing and a treasure you are! I may get sad sometimes at the way that people behave, act, and do things to or around you, but know without a shadow of a doubt that your Mama will fight to get you what you need. You, my sweet angel, have made me a better woman. You have given me courage to attempt my dream. You have given me assertiveness that I never had before. You have given me a drive that wants to change things for other Mommies and kids. Lilah, you came to earth to change us all. You came to teach us how to love and accept each other, You are here to make such difference. What you don't know is...you have saved me. Going through everything we have, I have learned and grown. I have seen the face of God in your eyes. I have seen the LOVE of Christ and feel it more in my heart than ever before, Lilah, you are an incredible woman. You are a treasure. You are a beautiful woman and you shine HIS light for all to see. Happy Birthday my miracle!
I love you so much Lilah Bird,
Mommy

To watch the video Aaron made for her birthday click HERE!

YES!

I have researched and researched since Lilah was born. I have followed blogs, asked questions, laid my heart out for the world to see, literally, kept digging, kept asking, kept believing.
Many of the articles I have read, and/or linked on this blog have been from Texas School for the Blind and Visually Impaired. I have read article after article from what they have written or produced. What an amazing source of information and knowledge they provide!


Since Lilah was born I have learned that I must fight for her and what I know she needs. I learned along the way that if I don't say what I know she MUST have to improve, no one will. I am her BIGGEST and BEST advocate. Sometimes being her advocate means making people mad or frustrated. But see, my intentions are never to hurt. My intentions are for my girl. I have learned that as long as I am pleasing God, Lilah is improving, and my husband and children are happy, then I am doing my job. Many will judge, but that's okay...


I have fought HARD to get Lilah O&M. HARD! Savannah Association for the Blind told me that I wasn't allowed to get O&M until Lilah was mobile, walking and getting around better. Well....TSBVI says VERY different. Read THIS article!
TSBVI says that O&M should be present as soon as possible to help the infant learn cues through tactile, sound, etc.


Lilah has been receiving O&M for about 3 months. I am going to stop right here and say a big fat WOOOHOOO that my fighting has paid off!!!


Lilah's O&M specialist, Yinka, is amazing! She spends the first 5-10 minutes loving on Lilah, allowing Lilah to feel her hair, earrings, snuggle, etc. Yinka gets MORE from Lilah than ANY therapist. She spends SO much time loving and respecting Lilah that Lilah gives back to her ten fold. I have heard her babble more, seen her get more mobile, etc just from Yinka allowing Lilah to do it a little more on her own terms. Yinka said, "I have learned to give the child choices, and if they don't want to do it, they will go back to it eventually."


Guess where Yinka did her Internship? Yep...you got it...TSBVI!

How cool is God for orchestrating THAT?

So, I just finished Lilah's IFSP meeting(s). Yes, we chat a LOT so we extend it to 2. LOVE that!


Having to make changes that benefit Lilah, and my family, may not be the easiest thing, but I am here to serve God and be the best wife and Mother I can.

Lilah learning "I'm a little tea pot!"

Please ignore my singing, but wanted you to see how Lilah's is trying to do "the moves" of the song.

Happy 2nd Birthday Lilah

Aaron surprised me, at Lilah's party, and made a video from all the photographs I have taken of Lilah over the last Two Years.

Lilah will be 2 on Thanksgiving. What a HUGE amount we have to be thankful for!

My family

I could not begin to thank God enough for the blessings in my life.

An amazing husband who LOVES me and my children unconditionally. I LOVE you, Aaron. Thank God for you. Thank God for our marriage, our children, and eternity together.
The JOY and wonder of being a MOTHER...

The Greatest gift!

My beautiful mini-me that has the biggest servant heart.

She will make you giggle!

The drama queen who can turn it on and off in an instant. This little one has a heart of gold and keeps me on my toes!

My handsome man. He is his father in every way...playful, funny, mischievous, has a HUGE heart...but thank God he got his Mama's rhythm!

The miracle!

What she has done for this family...what she has done for so many...what she will continue to do in this life

I will NEVER take them for granted.

Thank you, Lord, for my family!

WHY her? why HER?

I remember the grief I was faced with when Lilah was diagnosed. I will NEVER forget that moment...I didn't understand. I remember praying and asking, and begging, and getting SO mad at God..."WHY HER?"

The first five months of her life I was SO alone. I didn't know where to turn, who to ask for advice, what to do. I was OVERWHELMED. No one could make me feel better. NO ONE could take the hurt, pain, anger, questions, sadness, etc. away. My questions, comments, thoughts and prayers went on and on and always back to that SAME question..."WHY her?"

MONTHS later, hundreds of thousands of tears later, time, prayers, GROWTH...and NOW... I see a TOTALLY different perspective.

Last month I went on a spiritual retreat. My first EVER. The absolute BEST thing I have ever done.

You see...I thought so many messed up things about Lilah's birth. I didn't understand..no, NOT FULLY, the depth of God's love for me....for ALL of us.

See, I blamed myself for Lilah's diagnosis. I blamed myself as if I caused or created or "did" this to her. "Did I eat the wrong thing, drink the wrong drink, should have done this or that differently, etc" See, THAT was wrong thinking. I had believed these lies forever. That everything was MY fault. I believed the LIES that others told me. People who were(suppose to be)closest to me. People I was suppose to trust.

When I went on the walk to Emmaus I was faced with some of my toughest fears. People from my past were there. People from my present, and people who confirmed what I already knew in my heart, but had been lied to for 18 years. I had to face those fears to see the FACE of GOD.

I had to lay ALL of my burdens at the cross. Give it ALL to the Lord and know that HE died on the cross to set me free.

I am FREE!

I learned on my Walk to Emmaus that it doesn't matter what ANYONE thinks of me. It doesn't matter what anyone thinks of Lilah. What matters is what God thinks of us!

Lilah was given to me. Lilah was trusted to me. Lilah was placed in my care for me to help change things for her, and for others. I have been VERY determined to change the way that special needs children in my area, and all over this country, are being helped.

I have been fighting SO hard to get Lilah the services she needs and deserves. I use to be afraid to ask for things. Until I realized...if I don't FIGHT for Lilah, WHO WILL? So, I have become VERY assertive. I have become very LOUD for Lilah. I am sure that some people don't like me. You know what? WHO CARES!!

This squeaky wheel has gotten a LOT of grease for Lilah...and for my older three!

I know that what I am doing is pleasing the Lord. He has given me this blessing of Lilah and I am honoring HIM with ALL that I do for her...for ALL of my kids.

****a little back story****

September 4th was our Anniversary. 18 years together, 11 years married. Yes, we are high school sweethearts!

This September 4th, Aaron got down on one knee and re-proposed to me, complete with a new ring he had been saving TWO years for. He asked me to renew our vows and he did this in front of our children. He wanted our kids to see that he is a changed man and is committed to me and our family. (picture of the ring will have to wait....and here is why....)

Today as I was getting my ring sized I looked over at the other couple in the store. There stood a man with his arm around a confident woman explaining to the salesperson what she wanted...holding a white cane.

I was overcome with emotions. I stared at them. NOT a bad stare. An in AWE stare.

I saw Lilah. I saw her in that woman. I saw my baby in the future, being LOVED, being cared for, getting a ring, saying what she wanted, and NOT caring what anyone thought of her.

I noticed the couple leaving and stopped them. I could barely control myself as I told her that she exuded confidence and I was in awe of her....for my daughter.

The woman was very polite and told me that she doesn't always use the cane the right way, but she tries.

And THAT folks...is JUST it.....we try. We all try. We all fight.

And we should NEVER give up. EVER.

Don't take NO for an answer. HOLD fast to your faith. Stay strong in the Lord.

Don't let people's opinions of you stop you from doing what glorifies the Lord.

"Why Lilah?"

I will tell you WHY....

She will change the world. She will make people see the FACE of God. She will bring more to HIS glory. SHE will LEAD others to know their true calling.....she has with me.

I cannot begin to thank God enough for her. Lilah has given me the confidence to do SO much. She has taught me that I can fight. I can keep pushing and I can do it.

THANK GOD for LILAH!

Lilah WALKING from one side of the house to the other. GO GIRL!

GOOOOOOO LILAH GOOOOOO!

Lilah "talking" in the morning!

Halloween 2010...and a something HUGE!

We had a BUSY, but GREAT Halloween week.

Patchville at SCC is our favorite. Every year our church has a massive outreach for children of all ages. I am talking bounce houses galore, candy, hay rides, face painting, candy, rides, games, candy, oh and did I mention CANDY.

Eli had his fall festival at his school, Sammie had a party, and Alex had a fall festival too.

We are worn out...and a little full of candy!

Here are a few pictures to share. I know I am biased, but don't I have beautiful children?

As I got the kids together to take this before we headed to meet Aaron at Patchville, the stray cat came running over and got in. Eli as the Dark Knight, Sammie as Spidergirl, Alex as Spiderwoman, and Lilah as Minnie. Now, for those of you who are wondering why Lilah isn't a super hero...let me stop you really quick. Minnie IS our hero. When we went to Disney, Minnie's assistant held the line and Minnie led Lilah's hand all over her ears, face, nose, and more. (YES I CRIED) From that moment on, Minnie and Lilah had a connection...and Aaron and I fell in LOVE with Disney...so Lilah IS a superhero, too!
As you can see from this picture, Lilah LOVES her Daddy. She giggles and squirms when he gets her with his "whiskies." I am SO blessed to have SUCH a wonderful husband who loves me and our children unconditionally!

" Who me? No, I didn't eat the last one?"

She looks like she got caught RED HANDED!

My beautiful mini-me, Alex. She will be 8 next month. I love her SO much. She has the biggest servant heart I have ever seen.

Now, here is my boy. I love this little handsome devil who looks, and acts, just like his Daddy. I have had people ask me if I actually gave birth to him because he looks so much like Aaron. Yes, all 9lbs 5 oz I pushed out. Trust me, he is part of me too!

My little Sammie.... Such a sweet girl, but careful...she has a naughty streak. I love that no matter what happens, she LOVES to have her picture taken. She can be crying and so upset over a toy,then see my camera, and pose like a model. I know, I know...this one will give us some trouble. I LOVE this little one...in all her dramatic glory!

Look at this beautiful, messy, gorgeous, miracle. She was crawling and pulling up all over the sanctuary at church while "Dan, the Animal Man" was on stage.

I looked at this photograph over and over. I saw something that struck me like a jolt of LIGHTNING....look closely...

HERE...

look at it closer.....

These are some VERY clear corneas.

No, they aren't "perfect" but who cares about all of THAT...look...

You cannot look at this last photo and tell me God doesn't exist.

No surgeries, not even one, on her eyes. She went from completely blind with opaque corneas to these amazingly BLUE eyes in less than two years.

God is here. God is with us. God is healing Lilah. God is changing us...all of us.

You know, when I found out I was pregnant with Lilah...I prayed and prayed for this child. I didn't get the child I prayed for....no, I got something a million times better.... I received the child I was meant to have. The Lord knew exactly what He was doing when He placed Lilah in my care. I am so grateful for unanswered prayers. I am SO grateful that the Lord saw in me a person who needed, deserved, and would LOVE this special child.

Lilah is my gift.

Thank you, Lord, for this most awesome honor. I pray I honor YOU with all that I do with her, my older three, with my husband, my family, and all that I meet.

HE is using Lilah....I have no doubt!

Babbling Lilah!

Listen to how great this is!

Her Speech Therapist, Bethany, will be very excited...but disappointed. Lilah saves her babbles for us only. She listens and observes when she's at therapy of any kind. We get to see all of the work for ourselves.

LOVE this little stinker!