Lilah's vocal sounds

Isn't she amazing?!!

Thank you

God for Lilah!

What a gift and a blessing she is to us all.

Isn't she lovely?

As I was editing these pictures of Lilah, Stevie Wonder's song came to my mind. As people stop and ask about her AFO's, patch, disability, etc. most often we hear how pretty she is. I use to wonder if they really meant it or if it was just "something nice" to say. It doesn't matter what others think. I KNOW, and God knows, she is beautiful.

Isn't she lovely?

Isn't she wonderful? Isn't she pretty?

(LOOK at those beautiful eyes!)

Made from LOVE!

Patching Prayers

When we left Dr. Greenberg's office last month and he told me that because the patching IS working we must increase the time, I was ready and up for the challenge. Here is what most of you do NOT know. Patching IS hard work!! Not only for Lilah, but for our family. We have to keep her patch on for 5 hours everyday. 5 HOURS! That may seem like nothing to some, and HUGE to others. Think about it for a minute. Lilah is 28months. She takes these patches off VERY quickly, and very easily. Some have offered other patching methods, BUT these patches are the ONLY ones her Doctor recommends. She must have her left eye in complete darkness for 5 hours, therefore forcing her right eye to do all the work. At her age she would move, remove, etc a different type of patch. With patching we must keep her very busy. I must watch her like a hawk. When I don't she takes them off. Each box holds 50 patches but costs around$20(with shipping). Locally only ONE drugstore will occasionally carry them(30 minutes away) So, we make sure these patches stay on and we use them as if they are gold. Because they ARE like gold. What they do FOR her is HUGE. This little patch, smaller than the size of a softball, is preventing her from having to have muscle surgery in her right eye.

My friend, Jennifer J, sent Lilah 2 boxes of patches last year and one box this year. Jennifer has NO idea what that did for her. SHE played a HUGE role in helping save Lilah's right eye. Now the task of working it as hard as we can to keep it straight and prevent surgery.

I have not asked for prayers in a while. I suppose I became afraid that many believed I wasn't accepting Lilah as she is. See, that is NOT the case and THAT is what Satan wants me to believe. He wants me to stop asking for the Lord to intervene, he wants me to stop thinking that Jesus cares enough to listen. But you know what, Satan is losing this battle. I will ask for prayers for Lilah everyday of my life, just like I will for my older 3 children AND my husband. Prayers work, they change things, and they change they way we perceive the fight we are in.

Heavenly Father,

Thank you so much for all that you have done for me, my family, and for those reading this. I know that you have blessed, not only us, but those reading this. You have used me, and Lilah, to help them grow closer with you. I am grateful to be your servant. I come to you asking because I know you can. I come asking for you to meet me at this place of fight and uncertainty. I ask you to help Lilah's right eye. I am asking for continued clearing, clarity, and thinning of both of her eyes. I am asking for answers and direction on what the deletion means on one of her genes. I am asking you to guide me and open doors for Lilah to be able to walk and talk and be as independent as possible. Lord, I feel so alone in his battle sometimes. I ask that you help me to feel your presence in those dark places of fear. I ask that you give me your peace to know that no matter the outcome, results, or experience YOU, merciful, amazing, giving, perfector of all are there holding me, and showing me your light in my little girl. I am asking you to help me to trust you even when I am mad and angry and frightened. I am asking you to help me to see that you love Lilah much more than I could ever understand. She is your design and your work and you do NOT make junk. She is perfect how she is, and you have trusted me with her. I am grateful for this gift. I am asking you to do your glorious work in her so she can continue to shine your light and lead people to you. You are the ONLY thing we all need. Thank you for loving us so much. Thank you for doing all you can so we will come to you and know you more.

Amen.

Thank you for praying for my girl!

This caught my attention...

As I was trying to finish editing the pictures from Disney....yes, almost a month later. I came across this picture that stopped me in my tracks. First, a little back story...



One of the best things about Disney is that they do it right. What I mean by that is this: Lilah sat in the front row of most shows, and the back row if it was too loud. Disney makes special needs "normal." They make sure that guests with needs are taken care of and that the family members with them experience it "normal" too. Everyone at Disney goes above and beyond to make sure that those with needs are still included and enjoy Disney to the fullest. THAT is why we save our money and go. EVERYONE in our family loves it. Lilah is NOT left out, like at MOST places. Actually, it is reverse. Disney put Lilah and her needs first. THAT was priceless!!



We sat on the front row for the Beauty and the Bast show. Last time we went to Disney, Lilah didn't understand that much. Not this year. She soaked it all in and really enjoyed each moment. Here is one picture that speaks volumes to me, as her mother....



Lilah, in my lap, watching, yes...you read that right...WATCHING Belle and LOVING the show. The colors, the sounds, the characters, the dancing....Lilah was smitten. Her Mommy...held back tears as she enjoyed it all!



Look at Lilah's face in this picture. She SEES it! THANK YOU GOD!!! She sees it!

pain...

Lilah had her adenoids out and her second set of ear tubes last week. I have been watching her in SUCH pain. No longer do they give pain meds or antibiotics for these surgeries. JUST Tylenol and Motrin.
Well, she was OK for day one and 2. Day 3....HORRIBLE! now...well, I am piggybacking the Tylenol and Motrin so she feels no pain.

The main problem here is that Lilah is low toned and the extra fluid has no where to go, so..it is now in her lungs. I am doing treatments and keeping her active to help her expel the extra fluids. Then on top of that the pollen count here is um, well...lets just say that we call it southern snow here! My white car in yellow and well, so is my black grill cover. You get the idea.
So, I haven't been writing for this reason....AND....
I am attacking some major issues on the SSI, medicaid side too. Yep, after all the fighting I did to get her these services, NOW, they are going BYE, BYE...soon.
uggg...the battle NEVER stops!
On top of all of this I am going through some growth "pain" myself. Spiritual growth that is...
I am doing a WONDERFUL study with some AMAZING women called Captivating.

Painful? you are asking. How? Well, because I have had to identify my wounds...MANY of them. Where they started and how. Age 7, for me. Abandonment, Pain, Ignored, Constantly interrupted, Left, The "fat" sister, not good enough, too LOUD, too much, "you never know what Katie will say", ugly, gross, he chose her over you, he chose another family over ours, they chose other "friends" over you because you are NOT good enough, pretty enough, smart enough, etc, etc, the one who was not "planned" but instead was "just a good summer", why won't someone "SEE" me, what do I have to do to be LOVED?

See, all of these wounds, lies, things...may have been "funny" to say, accidents, "the best they could do" but hurt me deeply. Some things "just happened", were allowed to happen, were mistakes, etc...but these wounds, lies, mistakes, accidents, etc. caused me deep pain that began at such a young age. I look at my oldest, now 8, and I pray "Lord, please help me to NEVER let her (or the others)feel those things." I am NOT mad at those people or events, BUT I am allowed to grieve them without someONE telling me I deserved it, to hush, "they did their best, Katie", we all make mistakes, etc. I am allowed to wrap my head around the fact that I HAVE some major hurts here. If I don't feel them, expose them, acknowledge them, call them what they are...then how will I EVER know what is the TRUTH? See, I have been told ALL of my life to "HUSH!" Rarely did anyone ever REALLY listen to me without trying to squash me, my feelings, my heart, my soul, my wants, etc. I have been told I am selfish more times than I care to admit. By people that are suppose to LOVE me. My view and thought of LOVE was very messed up.

Before you think, "wow, you are spilling the "beans" here" or "calling people out" hold your breath. I am exposing "me." ust ME...and MY pain. I believe in being VERY transparent. I believe in being honest about where I have messed up and where I have been hurt. So, I can help others who NOW, I know, share VERY similar pain. I am NOT alone here. There are other people out there who have been hurt and we should expose the LIES to find the truth.

I have experienced PAIN in many ways. These painful moments have left me with many scars. I am learning in my Captivating Study to allow the Lord into these places so He can heal me.

Some of these places I am afraid to go to within myself. I have buried them SO deeply, for so long, so I can just "try harder" and cover them up. That kind of thinking is getting me NO where.

See, one of the biggest LIES I have believed in the last 2 years, that I have allowed Satan to tell me, was that I "did this to Lilah." I have done SO much wrong, am SUCH a disappointment, have hurt people, was inferior to others somehow, that Lilah's disability was my "fault." Not a blessing, but a curse for some "thing" I did. WHY did I believe this lie? Why did I think that there was something wrong with me that made something "wrong" with her? Why did I allow Satan to tell me that lie? WHY did I believe it? Why did I think that there was something "wrong" with her? Why did I miss the miracle and the gift for the lies? Because THAT is what Satan does. He came to destroy our JOY. John 10:10 " The thief comes to steal, kill, and destroy. I have come so that they might have life and live it more abundantly."

As I am going through this study and reading the book Captivating, I am experiencing pain, but I am also ready for Jesus to enter into those most private places and heal them. I have asked HIM many times to come to those places, even to go farther than I know, and allow me to see HIS truth and be able to distinguish HIS truth from the many lies I was told.

Pain is not fun, but through this pain I pray I will find healing. Just as Lilah is not having fun healing from surgery, but I know that the truth is, she will be healthier in the end.

And in truth, freedom comes.

Crossing the finish line

I am trying to sort through SO many images to show our time at Disney. I have been editing, organizing, etc...but I had to share this one with you. It was right after Lilah crossed the finish line(there are two speed bumps that make up a finish line in most races) I was overcome with emotion as she crossed the finish line. (The entire video is below in the previous post. I HIGHLY suggest you watch it.)

Lilah's inspirational 100M walk at Disney!