ENOUGH!

Tuesday December 28th at 9:15 AM in preparation for her MRI, I finally came to my breaking point. As I held Lilah down and the nurses tried to find a vein, I prayed and prayed and had a "GUT CHECK!"

One vein after another the nurses blew... 4 TOTAL!!... I cried so hard realizing that I am putting my child through all of these tests. For what? Yes...that is it...for what?!?

So some PT can have her "happy day" that yes, indeed, Lilah does have some "thing"? Am I helping her or hurting her? Do we spend more time in therapy than at home?


Each time they "test" Lilah the nurses seem to blow her veins, then the Doctor will come in and rescue her and find it on the fifth try.
Next time I am asking for the Doctor RIGHT AWAY!


I look at this face...
and I think to myself, "Does it really matter the "name" of it? What if it really is NOTHING more than my child is visually impaired?"

See, I research...and research...and research...and because my town is SOOOOO lacking help for the Visually Impaired, not many people know how to work with Low Vision patients.

It seems too many times that the "professionals" like to treat their "patients" all the same. THIS makes me VERY upset. See, when you can't see very well...things change. We see with our brain. The eyes are just a vehicle. So, when the eyes aren't "right" everything changes. My child cannot see well...take the time to THINK about what it would be like to not be able to see? When you go to the bathroom in the middle of the night, do you walk fast or slow? Do you run to the bathroom in the pitch black? OR do you walk slowly, hesitating with each step because you cannot see what is in front of you? Do you shuffle your feet in an effort not to trip on that toy you just know your child left on the floor? Or do you run? Be honest, you slide your hand along the wall, walk slow, run your hand up and down the wall until you find the light switch. What about Lilah?

What if you could never turn the light switch on?

Recently I stumbled upon a "message board" for parents of Visually Impaired children. The conversations were from 2006, but EVERY parent discussed when their "blind, VI, low vision, etc" child walked, talked, potty-trained, etc.

And you know what???

Lilah is right on track for being a Visually Impaired Person. Actually, she is babbling much quicker than some of the other patients I read about. Now, I am very aware that this can differ from patient to patient. BUT, my point is...

ENOUGH tests! I am so tired of watching my baby cry, and scream, and be poked and prodded because she is "different."

I am putting a HALT to it.

When we receive the results from the MRI, that will be the last of the tests for a while.(unless the neurologist finds something that needs to be treated)


I want my child to enjoy LIFE!

So, my new years resolution is to spend more time enjoying life with Lilah and less time letting the "professionals" tell me what to do. She is my kid. God gave her to me for a reason....and I think I am doing a pretty good job!

I love you Lilah Bird!

What Santa brought Lilah for Christmas...

After months of deliberation, Santa and his elves could not decide what to bring Lilah.

First they thought about random toys that would be fun to play with....

Next they thought about toys to help her eyes...

Then they thought about toys to help her walk....

But....

Nothing seemed right.

Santa FINALLY came up with the PERFECT toy....

Lilah really loves playing her GaGa's piano, so he decided she needed one of her very own
Doesn't she look like Mozart here? With her legs spread wide?

She had to have a little chocolate too

Daddy says she looks like Stevie Wonder playing here

And when she's all done, she backs off of her seat all by herself.

Santa did good!

Christmas Miracle. Lilah said "AGAIN!"

THIS is a MIRACLE and I am grateful!!!

Merry CHRISTmas

Love the Sharp Family!

Remembering...

I will never forget the thoughts, feelings, emotions, heartache, joy, and questions that came after Lilah was diagnosed at 18 hours old.

I remember hurting like I have NEVER hurt before.

I remember crying more tears and weeping with wails that I thought were meant for people who were grieving. What I didn't understand was...that I was. I was grieving the loss of a "dream" child. You know...we ALL do it. We all pray for 10 fingers, 1 heart, 1 brain, 2 kidneys, 2 arms, 2 legs, 10 toes... healthy child. RARELY, if ever, do we become pregnant and say, "OK Lord, here I am. I trust YOU with this being you allowed to be created inside of me. I trust that you will give me whatever child YOU have planned." I wish I had THAT faith two years ago....
See, I didn't. I didn't trust HIM fully. I still wanted MY way. I am human. I wanted the perfect fourth baby to heal the wounds that were scarred in my soul forever from my past. I wanted this baby to "fix" all that was wrong and still healing in my marriage. I wanted this baby to be a new beginning for our family. To help restore peace, calm, happiness...and so much more.

When Lilah was born and they handed her to me...I knew. I knew immediately. I knew that her eyes were different. I knew. But, the nurses said"No, she's fine." God gives us instinct. God gives us those moments when HE is present with us to feel and hear the Holy Spirit. I knew, my gut, my GOD, I knew. But, I didn't trust. I wanted to know what it was. Would it get better, go away, be filled with quick healing and something simple.

Nope. It wasn't easy. It wasn't quick. It wasn't free of pain. This journey with Lilah has been one of the MOST painful journeys ever. But...I am stronger now.

I look back at that time and see how God was answering ALL of my prayers. ALL of them. He wasn't answering them as I wanted them answered. He was answering me as they NEEDED to be answered.

My child. My heart. My sweet ANGEL...Lilah. She has changed us so much. My home is different. My family is different. My voice is different. The way I view people is different.

The Lord gave Lilah to me to change me from the inside out. I needed to be humbled. I needed to be changed. I needed to have my marriage and family restored.

What I didn't understand when I heard Lilah's diagnosis was that the Lord had a plan. He knew that by giving me this child. SHE would change me, my perceptions, my heart, my love, my passions, my compassion, my advocacy, my work ethic, my joy, my sorrows, my pain, my healing, my soul.

I wasn't trusting HIM. Go back and read this blog from the beginning. See the pain in my heart. See the weary soul who yearned for her daughter to be healed. Who asked God time and time and time again, "WHY? WHY? WHY? WHY HER?????" I was MAD. I was hurt. I was angry with God. I didn't understand. I thought ,"WHAT have I done for YOU, almighty, to allow her to be born like this?" I remember wailing MANY times, "Lord, PLEASE heal her. FIX this. Make her better. Make her not have to work so hard, be so different. God, PLEASE( I was pleading at this point on my knees) PLEASE take this from her. NOT her. Give it to me!!!!"

I didn't see, or feel, HIS hand...holding mine all along. I didn't see HIS face in Lilah. I didn't understand that while I was cradling her in my arms screaming out of pain and sorrow for my child, HE was there. He was already there....rescuing me.

HE sent her to heal me. He sent her to heal my marriage. He sent her to heal my family. HE sent her to heal the wounds and lies I had believed since I was 7 years old. He sent her to heal others. He sent her so MANY others could see HIS face. HE sent her so we could see and feel HIS presence.


Why o why am I SO human and could not have seen HIM in all of it all along???


Because I needed to go through the valley. I needed to feel the pain. Experience all of it in every fashion so that I could understand HIS love.

I always thought HIS love was for everyone else BUT me. I always thought I was too bad and had thought and done too much wrong that I didn't deserve HIS love.


Want to know the TRUTH? HE sent her to me because He DOES love me!!!! YES, HE does. He trusted Lilah to me because HE wanted me to feel HIS touch through her fingers and feel HIS arms in her hugs, see HIS face in her smile. I have been holding a slice of heaven all along and I missed so much by not trusting.


HE is with me on this journey. He is right here.

Today, I see HIS face. Today I trust HIM fully. Even when I don't get it. I am human and get sad, BUT...I trust HIM....and I love HIM.


I love HIM even more because HE chose me. He chose me to tell the truth and feel the pain and experience it ALL so I would share with you HIS love. He is real . His love is real. He has come to SAVE you. Will you trust HIM and let Him in?

I did...and I will NEVER be the same again!

Thank you, Lord, for Lilah Hope!!!!

Lilah has improved SO much!!

I have to be VERY honest...this morning I was feeling VERY sorry for myself. Today was the annual MOPS ornament exchange. I miss MOPS so much. I miss my ladies. I miss my friends. I miss the conversations. I miss the hugs, the love, the prayers, the support. On so many occasions I feel so lonely that I can just cry. I gave up MOPS at SCC this year for Lilah. I put her needs above mine. I traded my MOPS day for Lilah's full therapy day.

This life is NOT about me. It is NOT about my desires, my wants, my hopes, my dreams. I am the Lord's servant and Lilah was given to me. I have been entrusted with her and her care. I must do for her, for my other three, and Aaron before myself.

I am obeying God by placing my children and my family above me. They are my first ministry and my first priority after HIM.


My sacrificing has paid off TEN-FOLD! Here is what sacrificing has done:


THIS is what Lilah did today after she ROCKED it at therapy!!



I know I have made the right choice!

Lilah TALKING!

She has the voice of an angel.
(ignore the Mama voice who cannot sing very well)

Communication

I have been wondering...ok, let's get real here... I have been dying.... to hear my little angel speak. Dying to have her communicate with me on what she wants to eat, drink, more, again, does it hurt, are you happy, do you feel loved, do you know I love you more than I could ever explain in words or emotions...and much more.


Slowly this gift of mine is opening her mouth and letting sweet sounds out. The other day, clear as can be, "Ada" (sounding more like "ahhDahh") came out when I asked her if she wanted me to sing the song again.


Well, yesterday in the car I could hear her behind me trying to relieve herself in her diaper, then she began to whimper. "Lilah, are you ok baby?" I asked.

She got more frustrated.

I said, "Lilah, did you go poop?"

And she said it, "baba"

I said," We will be home in just a minute and I get that poopy off."

Lilah grabbed her diaper with both hands and said it again, "baba"


So...ignore the descriptiveness of this post and the "wrong" sound she made....and see this for the beauty that it is...


My girl went poop, hated the feeling of being in it, and communicated to me by pulling at it with her hands and her "baba" to get the nasty thing off of her.


I am praising God for this little moment of understanding. I am grateful that her brain is comprehending me. I am grateful that no matter the sound that comes out...there is something. I am grateful that my girl is smart enough to know that she wants that nasty poop off her bum.

See, when you are given the gift of a child like mine, you refuse to take anything...ANYTHING...for granted. Each and every sound, cry, laugh, tear, pain, and triumph is God showing you HIS existence in the face of your child.

Thank you, Lord, for choosing me...for her. I am humbled by this experience and pray that I will honor YOU and Lilah, and my family, with all that I do and say. Glory to God!!

Attacking this fear with TRUTH

Today as I type this post, I am reminding myself what I have committed to do from the very beginning...tell the truth. I refuse to type things I do not believe. I refuse to cover things up just to "make face", have someone else see how "strong" I am, or pretend that I can do this.

See, I cannot. No, I cannot. But, Christ can..and HE guides me on this journey every step I take.

Here is where the honesty gets real.... I believe that by being transparent, placing my entire heart and being on this blog, I am honoring God. I do not do fake. I cannot "fake it til I make it." it's not me. It's not who I am.

Right now...I am fearful. My husband is fearful. We are under attack from Satan. So, before you click away from my blog because you think"yep, she's one of those nuts" ....hear me out....

We are honoring the Lord by serving HIM during this Christmas season. When many people are buying gifts, working and making more money....we have placed HIM first. We have forgiven people who have pained us deeply, we have done for others, I have limited my sessions to place the needs of my family first which has allowed Aaron to serve as a Roman Soldier in the Journey at Savannah Christian. Well, Satan is MAD. An ex-atheist doing the Lord's work and his wife, trusting and loving God even when it's painful. Nope, Satan won't have it. So, he has begun his attack again.

Aaron is worried that we "did" this to Lilah. I am worried that the I did this to my girl. I am worried that I am not doing enough for her.

Do you know where worry comes from? Not from God. I have allowed Satan to creep back in and spread his lies again.

Uggggggg...

So, I am ready to do battle. I am armed with the truth.

Lilah is "fearfully and wonderfully made"
Lilah is HIS creation
Lilah is amazing

"Therefore I tell you, stop being perpetually uneasy(anxious and worried) about your life, what you shall eat or what you shall dink; or about your body, or what you shall put on. Is not life greater(in quality) than food, and the body(far above and more excellent) than clothing?...And who of you by worrying and being anxious can add one unit of measure(cubit) to his stature or to the span of his life?" Matthew 6:25,27

And more armor...

"My son, give attention to my words; Incline your ear to my sayings. Do not let them depart from your eyes; Keep them in the midst of your heart; Fir they are the life to those who find them, and health to all their flesh." Proverbs 4:20-22


And from the book and devotional I am reading in Battlefield of the mind by Joyce Meyer:
"God of all peace, help me to recognize and enjoy Your presence in my life and to be thankful for all Your blessings. Don't let me waste my life worrying about things that only YOU can control. In the name of Jesus, I ask YOU to free me from worry. Amen"

Genetics update...somewhat

After waiting two months on information from Lilah's genetics test results, I found out last week that the geneticist said they never received the results. So, I called my pediatrician again...

then, I took matters into my own hands. I called my friend, Dawn, who is an audiologist here in town and asked her if I could borrow her fax machine. She faxed the results of the micro chromosome array analysis to the geneticist....and I waited until the fax conformation came through

THEN...I called. "Did you get it?", I said.
The secretary said, "yes"
I said, "Could you please go place it on Caroline's desk? Thank you."

Now, you might be asking some BIG questions, like...

Why did we have to give the geneticist the results?
Why didn't they call us with information?
Did the geneticist not do the test?

Well, here are the political, not-so-nice, but really the honest-to-goodness truth:
The geneticist told us that if Lilah's blood was drawn at MCG that the hospital would take MONTHS just to allow her blood to be given to another hospital or school due to hospital political junk. So, he said our pediatrician would have to take the blood and send part to Wisconsin, for the Peters Plus Syndrome study, and send the other portion to have a micro chromosome array done. So basically the geneticist has done NOTHING but give me a bunch of numbers and the run-around.

If you think I am frustrated...it gets better....

So, Monday rolls around and I call the genetics counselor. Left a message..no call back. Then Tuesday I called, and Wednesday...
Finally, she calls today.
She tells me that on page two of the report it states that the specific gene on Lilah that has a deletion could be a familial variant, OR a new gene.
Here is what she said,
"You and your husband have these harmless genes(variant with unknown clinical significance) in your blood. This deletion could be one of those that was passed to Lilah. OR it could be a new gene with clinical significance that could show mutations. You need to get your blood and your husbands blood tested to see if it is harmless or something more...harmful."
So, I called my pediatrician, got an order for Aaron and I to have our blood drawn under this code that would show whether or not we have given her this gene that is "nothing" or if Lilah has a new mutated gene that could cause her issues forever.

I called Aaron, he had JUST started his lunch, and asked, "Could you please go to Cossio's office, get the order and go to the lab and get your blood drawn?" After some prodding about what his boss would say about lunchtimes, etc. He said he would.

I rushed and changed my clothes and Lilah's, went to get Eli from school, then hurried to the lab.

On my way Aaron called and said, " Got the order and my blood drawn. Cossio wasn't quite ready when I got there, but we chatted for a minute and he gave me the order."

I said, "Thank you. Did Sharon(Cossio's nurse) see you?"
Aaron said, "Yes, she and Cossio...and Sharon said you are too fast for her and Cossio said that this will come back as nothing."

So, as I had my blood drawn and told Eli not to look( he was so worried about his Mama) I kept thinking about what Aaron had said....

Nothing.

If all of this proves to be a genetic mis-fire and that they cannot explain it...and once again, God is in control...will the therapists and people who STARE at her ever stop asking what "IT" is? and can I finally just rest knowing that she is mine and who cares what this "thing" is that she has? or do I need to know the answers so bad so that I can help her, be the best Mama to her, and stop wondering? I feel like I am failing no matter what I do. When will the answers be"enough?" Am I doing all I can? Am I missing something?

So, our blood is at the lab...and once again we wait....and pray to trust in the ONLY thing we know for certain:

God gave us Lilah, and no matter what she is mine and I love her with my entire being!

and..........

I will NEVER stop fighting for her!

HAPPY

No matter what she faces....

No matter what she sees and cannot see...

No matter what the disability....

Lilah is

HAPPY!

Lilah's Tea Pot

Trying to get Lilah to communicate with us is often very frustrating to us, but more to her. I see the look in her eyes that she really wants to. I know she wants and needs to tell me something, but can't.

After months of Speech Therapy, and many, many , many repetitions from Mommy...something happened today.

I could barely control my emotions. My body didn't know whether to praise, laugh, cry, or cheer.

I have been singing "I'm a little Tea Pot" for Lilah about a million times a day. After the first four times, she would bend her body because she liked the "tip me over and pour me out" part.

At lunch today, I began to sing to Lilah. And when I was done I said my normal, "Again?" and then it happened...

"ADA" she said.

My heart leapt...
"I'm a little tea pot..." I began to sing again, voice half shaking, eyes filling with tears.

My girl understood me. She did. She spoke to me what she wanted.

I bet I sang I'm a little Tea Pot 50 times. Each times she would vocalize something, move her body at the end, and shake her arms for me to dance.

As I sit here and type this I am just in AWE of God. When I feel the saddest and the most lonely, HE shows me that HE is right here with us, holding our hands as we walk the paths of Holland together.

I remember being happy that my older three hit milestones, spoke, walked, etc...but this is different. If you only knew what it is like to watch your child try with ALL of their might to do something...cry big, fat, rain-drop sized tears, you would understand why I cannot control myself when she does something. I must shout it from the rooftops!

God showed me HIS face today...in the face of my little blonde beauty as she held her hands out and danced and said, "ADA" for me to sing it again.

Man, God is amazing!

"ADA!"

For her

On Lilah's 2nd birthday, 11/25/10 Thanksgiving, I ran my first 10K. I ran the 10K portion of the Ten Can run. We pay to race and give 10 cans of food for the Lighthouse Ministry for my Church, Savannah Christian Church.

Lilah inspires me to do things I would have NEVER done before.

Each step I ran, each time I felt tired and began to slow up...I thought of Lilah.

I pictured her face as she learned to crawl and would scream out of fear. I pictured her face as she learned to stand. I saw the image of her tears as she took her first steps with her walker...and I pushed. I knew that if she could fight that hard...so could I.

I ran my first 10K in 60:43. Sixty minutes and 43 seconds. Not too shabby for a first timer.

Me and my inspiration, Lilah, right after I crossed the finish line.

Thank you, Lilah, for pushing me to do better, be better, try new things, continue to fight, and NEVER give up. I love you SO, very much Lilah!