Tuesday, November 30, 2010
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
12:45-1:10 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
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.
Monday, November 29, 2010
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!
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...
***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***
Friday, November 26, 2010
You can read a digital copy online at
Thursday, November 25, 2010
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!
I love you so much Lilah Bird,
Wednesday, November 24, 2010
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!
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.
Sunday, November 21, 2010
Friday, November 12, 2010
The JOY and wonder of being a MOTHER...
The Greatest gift!
Thursday, November 11, 2010
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.
Wednesday, November 10, 2010
Wednesday, November 3, 2010
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!
Monday, November 1, 2010
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!