"May the God of HOPE fill you with all joy and peace as you trust him, so that you may overflow with hope by the power of the holy spirit."

~Romans 15:13

Monday, August 31, 2009

Not skilled to understand


Psalm 119:28 My soul is weary with sorrow; strengthen me according to your word.

I am so weak right now. I have heard many of you say that by saying I am weak means I am strong, but I feel far from strong. I am many things, but strong.....I feel the very opposite. I know what I must do. I know that I must engulf myself in prayer. I must surround myself with HIS teaching. I cannot do this all alone. HE is the one who rescues me. I need HIS rescue.

I need to feel peace. I am so consumed by all of this. I am so worried about Lilah.........
Backus today. They will evaluate her. Tell me how delayed she is. Push her and work her hard.
I welcome the challenge, but am also so fearful of it. The patching. Will it work? Can it work with no vision, maybe light perception in the right eye? Am I doing it right? Am I doing it enough? What happens if I fail her at this? Will her lack of vision be my fault? Is it my fault? The exam in four weeks. As much as I am anxious to know what they will find in her eyes. I, on the flip side, am scared to death to know what they will find in her eyes! I want to know. I need to know. But, I am so scared. I am so scared....I could just scream! WHY? Why Lilah? Why, why ,why does SHE have to go through all of this? What did she do to deserve this? All the doctors in the world can tell me that this is a fluke, a random occurrence that happens in the eyes, that I did nothing wrong, that I had amazing prenatal care. BUT...I STILL feel at fault. I just do NOT get it.

THIS is where my faith kicks in. I am SO weak. I am SO fearful. I do not know...but HE does.



I am not skilled to understand
What God has willed, what God has planned
I only know at his right hand
Stands one who is my savior

I take him at his word and deed
Christ died to save me this I read
And in my heart I find a need
Of him to be my savior

That he would leave his place on high
And come for sinful man to die
You count it strange, so once did I
Before I knew my savior

My savior loves, my savior lives
My savior's always there for me
My God he was, my God he is
My God he's always gonna be

Yes, living, dying; let me bring
My strength, my solace from this spring
That he who lives to be my king
Once died to be my savior

That he would leave his place on high
And come for sinful man to die
You count it strange, so once did I
Before I knew my savior

My savior loves, my savior lives
My savior's always there for me
My God he was, My God he is
My God he's always gonna be
The lyrics above are Aaron Shust's My Savior My God. I highly recommend you click HERE to hear the lyrics. You will not be disappointed!
I am smart enough to know what I need to do when I get down like this. I lean on my faith. I ask for prayers. I go to friends for prayer. I fall to my knees at the feet of Jesus. Today...I will be on my knees all day.(obviously with four kids that cannot be taken too literal.) I will be praying all day. I will pray without ceasing. Can you pray for me and Lilah too?

Thursday, August 27, 2009

"Its gonna be a little bumpy...."

Yesterday we were flown to Atlanta, again, by Welles. I have to tell you how much I really enjoy this sweet man. He donates his time, his plane, and his compassion to Angel Flight. He did so much more than all of those things for us. When we arrived in Savannah after the previous visit, he asked me when we were flying back. He said he would look out for us and try to fly us again. I told him about this website and told him that I try to update daily on Lilah's progress.
Wednesday night Aaron spoke with Welles about our flight Thursday. He told Aaron that he has been reading the blog and loves the pictures, the music, and all. So sweet!
When we arrived at Signature, Welles was talking with my father-in-law. When we walked in the door he stood up and said, "Hi Lilah." Boy did this heart melt. Lilah had already touched his heart. We talked about the flight and made our way to the plane. Aaron and I hugged his Dad and got inside. Welles told me that my buckle should fit because I was the last one to use it.
I, jokingly, but really seriously said, "I hope its loose, so maybe I've lost weight!" It wasn't.(Darn, those 10 weeks of walking at 5 am haven't done much, yet.)
The flight on the way to Atlanta was wonderful. Lilah was perfect. No tears. She laughed the entire time. She is the sweetest, most patient baby....ever.

Mommy and Lilah en route to ATL
When we got to Atlanta my cousin Mandy was there again to pick us up. This time her son, George, came too. Lilah got a chance to bond with her cousin before and after her appointment.


When we arrived at Dr. Lee's office, Aaron and I felt like we were going to receive some good news. We thought that she seemed to be improving.

We were wrong.


Normally when we arrive at his office, I nurse Lilah and put her to sleep so he can sneak the numbing drops in and try to test her as best as possible.This time she was awake and facing him. He was excited that she was looking right at him, but saw her right eye....right away.

I told him what I had seen at Dr. Cossio's (see previous post) and I was concerned about her reflexing. I told him that I thought the FML was working to clear right cornea more.

He is very concerned because her right eye is turning in and upward and moving more. The patching hasn't strengthened her eye...yet. He is concerned that we may "lose" the right eye...meaning, the brain may have shut it off because of the opacity,lack of vision, and the moving.

He examined her right eye closely. It rolled and it took a second for him to see the iris. He asked me if I thought that her right iris was smaller than the left. I said, "Yes, I have thought that all along, but was wondering if it was just me being paranoid that her left eye was bigger and had more pressure." He looked again at Lilah's right eye, and said, "The more I see her, the more I think she has Sclerocornea." (click on the word to see definition) He showed me how the edge of the iris and the white part of the eye seem to fuse together. He said that, "in hindsight I am glad I didn't do a transplant on her because Sclerocornea patients do not transplant well."

He said that he wants me to increase her patching from 1 hour a day to 2. I told him that I am concerned because after about 30 minutes of patching...I lose her. (because there really isn't much vision...if any...in that eye at all) I said that it is almost as if she is playing a game in the dark. I asked if I could patch in smaller increments and he said that there isn't scientific results either way...so go ahead. He wants me to patch her 4 times a day for 30 minutes. During those 30 minutes, I must really work her eye. Stimulate it as much as possible with lights. I said to him jokingly,"Yeah, like I have nothing better to do than sit on the floor and play with her eyes all day." He said he was impressed at all we have done with Lilah...especially having four kids. (Does he know I don't sleep?)


He said that Lilah's left eye is awesome. I asked him if we could try and increase the FML to twice a day, in the right, to see if it would help speed up the clarity...and he said yes.

We agreed that the next best option was to go ahead and put Lilah under so he can thoroughly examine her eyes. He said he wants to get a pediatric opthalmologist friend to come in with him so they can do many tests on her eyes and determine what all is going on in her eyes. I asked him if he were to guess, what did he think her acuity would be. He said that IF her retina is good, than maybe 20/40 or 20/60, but that is only if her retina is good. (Children with Lilah's condition have damage to the retinas without any warning.) I am assuming he meant in her left eye, because that is the eye she seems to have vision from.

So, in 4-6 weeks Lilah will be going to Scottish Rite Hospital in Atlanta. She will be put under lite anesthesia. She will have a very thorough exam performed by two very educated people.

All of this is...a lot to take in at once. If Lilah has Sclerocornea, she could, really, be blind and only have light perception. Lilah could never have sight from her right eye...or both.
Aaron asleep on the plane. When he's stressed...he sleeps.


Praying with Lilah.

All of this information just puts more pressure on me. I am the one who patches Lilah and stimulates her eyes. I am the one who prays as I drop each drop of FML and Trusopt in her eyes. I am the one who feels at fault. I feel as though this is the result of me not doing enough.

I think I would be handling this information a little better if it weren't for everything that is on my plate.....

  • The AC in the van is still broken....Aaron will be at his Dad's, 30 minutes away, trying to fix it...again..ALL weekend. I am so tired of that piece of junk! But...at least we have no car payment.
  • Alex and Sammie start school Tuesday...at different schools.more driving.But..thank God Sammie got in
  • Lilah starts PT, OT,etc. at Backus Monday...thank God it is at the satellite office here in Pooler. (She is delayed due to her lack of vision. You'd be very surprised at how low vision can delay development!)
  • I have to reapply for SSI for Lilah...just got the Denial letter in the mail. It stated..."she does not meet the requirements for disability as defined by Social Security." OK...just HOW disabled does she need to be?
  • Cook three meals a day, loads of laundry, Drs. appointments, school starting, school shopping, clean house, be a good wife, be a good mother, be a good friend...and attempt to sleep and rest at some point.
  • I must continue to teach, love, listen, and nurture all four of my children so they can become Christ followers. I do NOT know what I would do without my faith!

I know that all of this seems...trivial. I know that I sound like I am complaining...which I am not. I am just....overwhelmed. I need people to stop asking me so many questions. I need for people to stop staring at Lilah like she is a sideshow(GS). I need a break. I need some things taken off of my plate. I need to be able to play with my kids without worrying I am not doing enough to help Lilah improve. I need to be...refreshed. I am emotionally...bankrupt.

Having a child with a VI(visually impairment) is such an emotional roller coaster. There are no definitive answers. There really just isn't. It is a constant emotional roller coaster. Constant! As much as I pray for normalcy and mundane...I will not get it. At least not my idea of normalcy.

I am trying to grasp and understand that this is my new normal. Busy. Uncertain. Scary....but at the same time...I am still holding on to my faith. I am still holding on to the HOPE that Lilah will crawl, she will walk, she will talk, she will run, she will...see. I will NOT give up! NEVER!!

I want to thank Welles for the awesome flight. I want to thank Angel Flight for the opportunity. I want to thank Mandy for picking us up. I want to thank Aaron's Dad for seeing us off, and being there to listen and be so supportive! I want to thank Rebekah for taking Alex and Eli to play, and for the yummy supper. I want to thank my Mom and Bill for watching the kids. I want to thank my Mom for being there and loving me and Lilah....without judgements. I want to thank you all for the prayers. We need them now...more than ever.

Please pray that the patching and the FML increase will clear and strengthen Lilah's right eye. Please pray that Lilah will not need muscle repair surgery. Please pray that Dr. Lee will see an improvement upon our return. Please pray that the exam will show Lilah has vision, that she is NOT blind, that she has more clarity, and that all she will need is glasses....and maybe more patching. Please pray for strength for me. Please pray for peace. Please pray that I will have confidence in my abilities to help Lilah, Alex, Sammie, and Eli. Please pray that the stress will be lifted and will be replaced by Christ's joy. I pray that this pain will go away, and my feelings of guilt will be replaced with knowing I am doing all I can do...and that the Lord will help me through it all.

I thank you all for your continuous support and love. I cannot express how much it means to me!


Wednesday, August 26, 2009

Now I know

Yesterday Lilah had her 9 month well check-up. My baby girl had one shot. She did great! I talked to her as Sharon, "the shot lady", prepared her for the shot. I told Lilah, step by step, what was going on. I whispered in her ear. I told her that Sharon was rubbing alcohol on her leg, drying it, then I told Lilah that she would feel a little sting. She cried for just a second. I talked to her the entire time Sharon rubbed her leg. Lilah calmed down quickly.
Before Lilah had her shot, she was weighed and measured, and we saw Dr. Cossio. (Lilah is 22.9 lbs. and 29.75 inches long)He examined her. We talked about her eyes. I told him I thought her right eye was doing better this second time on the FML. Here is the dialogue:

Cossio: "Is she crawling?"
Me: "NO"
Cossio: "Is she pulling herself up?"
Me: "No"
Cossio: "How is she doing with eating?"
Me: "She won't eat certain things because she's so tactile defensive.(dislikes certain textures) I keep trying but she doesn't like the puffs, cheerios and larger pieces."
Silent Pause
Me: "We had a PT with BCW but that didn't work out. We start Backus (Children's Rehab Facility)on Monday."
Cossio: "GOOD. They will do PT, OT, and more with her."
Me: "So, do you think her eyes have improved?"
Cossio: "Her left eye is reflexing, where it wasn't at birth, but her right still isn't"
Me: "What does that mean? Don't you think they are both better. You can be honest with me, you're not gonna hurt my feelings."
Cossio: "Let me show you."

He handed me the Direct Opthalmoscope.(click on the previous word to see what I am talking about) He told me to point the light on her eye and look through the hole. We examined her left eye first.(Her better eye.)

Cossio: "Do you see the red in the middle?"
Me:"Yes."
Cossio: "When she was born there was no red. I could not see her lenses. In the red area(her pupil) you can see the blood vessels. I can see her optic nerve, too. Can you see the blood vessels?"
Me: "Yes. I can see it all."
Cossio: "Now, look at the right."

Here comes the part when Mommy's stomach tied in a HUGE knot.

I moved the scope to her right eye, placed the light on it, and looked through the hole.

Cossio: "You don't see any red, do you? You can't see the blood vessels or the lens."
Me...sadly: "No"
Me...holding onto all hope and composure I had: "But its clearer, less white and more gray than before. Don't you think?"

I spent more time looking at the right and my heart hurt more and more with each passing second. The entire time I am BEGGING God.... "PLEASE clear this eye and let me see red!"

Then....a glimmer....a small glimmer of HOPE.

In the interior portion of the eye, close to the nose, the size of a pin head......I saw pink.

God....oh God....PLEASE turn this pink to red. Please take every bit of white and gray from this eye and give Lilah the ability to see. The ability to experience this life to the fullest.


Tomorrow morning we head back to Atlanta to see Dr. Lee.

Answered prayer: Angel Flight is flying us again... Actually Welles is flying us again!!

So....This Prayer Warrior is armed and ready for battle. I am asking that you suit up with me and pray specifically for Lilah.

Heavenly Father,
Thank you. Thank you for ALL you have done for our family. Thank you for bringing Lilah into my life. Thank you for her. Thank you for all you have done for Lilah. Thank you for teaching me through her. Thank you for teaching others through her. I do not have enough words to express my gratitude for my miracle. Lord, I come to you today with a heavy heart. As many times before, but even more so today. I come asking for your power. I come asking for your perfect healing. I am asking that you, oh merciful Lord, please take the cloudiness, the white, the gray, and the scarring from Lilah's eyes. Please bring Lilah the gift of sight. Please do not let blindness and glaucoma ever touch these eyes. Please continue to clear her eyes, as only YOU can. Please allow Lilah to see from both of her eyes. Please keep us safe tomorrow on our flight. Please let us get great news from Dr. Lee. Please let him, once again, be impressed with her progress. Please allow the patching, I have done for a month, to strengthen the muscles of the right eye. Please give me the courage, strength, wisdom, and grace to handle this roller coaster. Please continue to heal Sammie from her surgery. Please guide my Mom as she watches the older three. Please give her the strength to take care of them. Please keep them safe while we are away. Please allow us to return safely to our children. Please open the doors for a fantastic visit, and a safe journey. Thank you, Lord, for the miracles you are continuing to provide us. I love you, Lord! Thank you so much. I am forever and always grateful!


Thank you for your prayers! Thank you for your support. Thank you for NEVER giving up HOPE!

Tuesday, August 25, 2009

9 Months

I love when I say, "Smile for Mama" and this is what I get!
Lilah is 9 months old today!
Today we will be going to Dr. Cossio's for her 9 month well visit.
I am happy we are going so she can show him how far she has progressed.
(and for him to look at Sammie 6 days post surgery!)
But the truth of the matter is that I know he will remind me of what she needs to be doing. This is where it hurts. This is what stings the most. While all of the other 9 month old babies are sitting alone unattended, pulling to stand, crawling,etc....Lilah is not.
Yes, I know that some day she will get there. But, we are here today.
Sometimes I get really sad being in Holland. Please don't get me wrong. I LOVE Lilah.
MORE than anyone except God.
Just some days are really hard. Some days I don't leave the house because I am so, very tired of being reminded of how different she is from other babies. Sometimes I stay at home because I can love her unconditionally without the whole world judging her. Sometimes I want to yell and scream at people for their rude, inconsiderate, way too curious, mean, filter-less comments. Some days I am sad watching other babies examine their toys, their hands, and their Mother's eyes. What I wouldn't give to have Lilah look at me, really look at me. The things those mother's take for granted.They have no idea how very blessed they are to be able to hold their baby and that baby look them in the face and smile.
But...I don't stay in this place for long. I don't allow myself to be sad about Holland. I try each moment of my day to remember the amazing things about Holland.
In my Holland...the tulips have bloomed and are reaching for the sun.
Lilah is reaching for toys with both hands now. For a baby who was born blind...she couldn't see the toys above her before. With what limited sight she does have....she sees them and she grabs them. Lilah is working very hard with the patch. She hates it, but I make the hour go by fast and do a mini PT and vision therapy session to get her mind off of it.
Today as I am reminded of how different she is....I will remind myself of how far she has come!

Sunday, August 23, 2009

The thinking girl



Thank you, God for this precious gift:Lilah!

Saturday, August 22, 2009

Thanks

Sorry I haven't posted in a few days, I have been helping Sammie heal from surgery.
(To read the full story on Sammie's surgery and see many pictures. Click HERE!)
Thank you for all the prayers for Sammie. Thank you to Neena, My Mom, Bill, and Tammie. I am so grateful for your love, support, and help.
We go back to Atlanta this Thursday, 8-27-09. I pray that we get another flight from Angel Flight. I will post more about my thoughts on the upcoming visit very soon. Thank you again!

Wednesday, August 19, 2009

New Experience for Mommy

Today will be a first for me. Actually today will be several firsts for me. This morning I will be taking Lilah to my friend's house to spend the day.(Thank you, again, Neena!) Mommy will be with Sammie at the hospital.
"Sammie doo" will be having her tonsils and adenoids removed. (Sammie, alone this year, has been sick with various nasal and throat issues 4 times.)
As a Mommy...you worry. Something the Lord gave us to sense our children and take care of them. Here are just a few random concerns for the day. As I write them I am trying to listen to the Holy Spirit to comfort myself.
  • I have never left Lilah for longer than 3 hours. (Lilah is a very patient baby and loves Neena's kids. She has been there many times and knows the smells and sounds at Neena's house)
  • Lilah hasn't take a bottle and barely drinks from a sippy cup. (I have pumped enough for her, and prepared plenty of baby food. She will be fine for one day. It is just one day.)
  • I have never had to put my kids "under" for any reason. (Thank you, Marci...my anesthetist friend, who told me exactly what to expect. Thank you to my best friend, Tammie, a PEDS RN, for telling me what will happen when she gets to the room.I LOVE having people I know in the medical field!)

So, today I am asking for prayers for my girls.
Please pray that Dr. Oliver, a friend of my Mom's significant other, will have steady hands, and that the Lord will guide him while he is operating on Sammie. Please pray that Lilah will do great at Neena's and that she will take the milk and juice from the cup. Please pray that Alex and Eli are well behaved for Neena, and that they will play nicely with Jake, Kendall, and Isabella.
I trust that the Lord will keep Sammie safe. I know that my strong willed little girl will do great. I ask for peace, wisdom, and strength.


Tuesday, August 18, 2009

Patching Play







Thanks Allison for the Lullaby Light!



Monday, August 17, 2009

Hope for the future

I have been in contact with someone I would like you all to meet. His name is Rich and.... he is legally blind, BUT guess what he does.....
He's a photographer.
When I think about Lilah's future there are many ifs, but when I read about Rich...I am hopeful.
Even though I know, without a shadow of a doubt, that Lilah will face many challenges being visually impaired....I have HOPE that Lilah will do GREAT things with the talents God has given her.
PLEASE visit Rich's...

Struggling to see

Rarely do I show what Lilah looks like when she is trying to see something. She grimaces, frowns, and most times looks like she's sleeping. (Hence the questions from people on whether she is asleep all the time. Yeah, I hold a past out baby on my hip...Come on people. Common Sense, please!)
Lilah works. I mean she really works hard to see things. It flat out wears her out. Patching...exhausts her. But, she's getting better.


I believe, after having some admit it to me, that many live in denial of Lilah's condition. Almost a fake reality, if you will. I am so glad that I choose to surround myself with those who accept, appreciate, and love Lilah for who she is...NOT expect her to change, or me to help them, because they cannot handle it. Here is our truth...Lilah has a vision impairment. She is different. She will always be different. But guess what.... I LOVE her differences. She has more patience and love than MOST sighted people. She loves like no other. I see little glimpses of heaven in my gorgeous girl.

I am not ashamed of Lilah. Please don't be ashamed of her. I love how awesome she is. I love how she has changed me. I love that she is changing the world. I pray for those who cannot accept her. I pray for those who cannot be around her because they cannot handle it. I pray that they will get over it. But, if they don't...we are better off without the negativity!

Thank you to those who remain helpful, loving, and accepting of our family! We love you more than you will ever know!!

Sunday, August 16, 2009

More Lilah to Love








ISN'T SHE GORGEOUS?

Friday, August 14, 2009

Teach me.

Exodus 4:11-12 The LORD said to him, "Who gave man his mouth? Who makes him deaf or mute? Who gives him sight or makes him blind? Is it not I, the LORD ? Now go; I will help you speak and will teach you what to say."

When I see Lilah struggle to "see", focus, find me, look,etc. I often wonder why the Lord allowed her to be born with this vision impairment. By no means am I mad at God. I hate watching as she struggles to see. Sometimes I lose sight of the fact that God has this all planned. HE knows what He is doing. I cannot fix Lilah's eyes, but I can ask boldly for HIM to. So, I will continue...
A VERY wise man said to me last this week, "Lilah WILL see, God already has that planned. What we don't know... is if the first time she really sees...she sees the face of Jesus."

Philippians 3:20-21 But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, who, by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be like his glorious body.
As her Mommy....I want Lilah to see all the things of this world. I will not stop praying for that.
I will "Pray without ceasing" 1 Thessalonians 5:17. I was reminded this week by that same wise man that I am allowed to mourn and grieve right now. He said, "You still lost something in this process." He told me that it was OK for me to mourn. It is OK for me to feel this pain. THAT was so comforting. For those people that do not understand what I am going through, are in denial of Lilah's condition, or tell me to snap out of it...I am allowed to feel this way. Lilah is my daughter and I know how hard this is for me...but I also know how hard this is for her.
I do not know the plans the Lord has for her. I will trust HIM. I will trust HIM. Lord, help me trust you.



Thursday, August 13, 2009

Just to hear it and see it

video

and one more

video

Wednesday, August 12, 2009

Kisses on the beach




My favorite place holding my precious gift


TYB







Wonder what she is thinking



Tuesday, August 11, 2009

She sure is

Love you!

Monday, August 10, 2009

It's working!

I asked for a specific prayer. I asked that this second chance with the FML on the right eye would give Lilah another shot at clearing that eye. In 12 days this is the change I have noticed.
Look closely at her right eye.(the eye on your left)
This picture was taken 13 days ago
This picture was taken this morning.
Do you see the difference?

Guess what matters most...
I SEE IT!


Normal?

I have said recently that I want to be normal. I want to be able to walk into the grocery store without being stopped 8 times with questions about Lilah. I want to enjoy a visit to a play area without people staring, then asking, then sitting back down an looking over at me with that "oh poor girl" look. I want to take my family away from the pain of what people say and do. So, I got to thinking.... What exactly is Normal?
Is normal being free from any abnormalities or diseases? Is normal being thin verses heavy? Is normal being tall verses short? Is normal being happy verses sad? Is normal being sighted verses low vision? Our idea of normal, in this world, is not the normal God had planned.
There are so many imperfections in this world. So many times we see "normal" people in magazines changing how they were made. Changing their outward appearance to fit the mold we have created in this society.
I have begun, in this process of grieving, to understand more and more what Lilah will face as she gets older. As a Mommy, I want better for my kids. I want them to be smarter, faster, happier, etc. than I was. I want them to feel more loved, more appreciated, more...accepted than I was. I think back to my childhood. I think back to how I was ridiculed for being the biggest and less attractive of the three. I can remember times when I didn't understand why I wasn't as pretty as my sisters. I remember, vividly, thinking..."If I could look like them, people would like me more." I am grieving for Lilah because she will have to overcome more than I ever did. But, thankfully she is much more beautiful than I could've ever dreamed to be.
There is pain in this process. Pain in finding out truths about yourself and your child. Sometimes the pain will diminish, sometimes it will never go away. I pray daily for wisdom, courage, and strength. When people tell me I am strong, I brush it off because they really don't know how badly I am dying inside. I have not figured out how to be strong for Lilah. I have not figured out how to be strong for the other three. I have not figured out how to be strong for my marriage. I have not figured out how to be strong...for me.
When I tell people I am doing my best. I am! I am surviving one day at a time. Some days....one minute at a time. As new as this is to those around me, know how "new" this is for me. I am doing the best I can. I am still learning. I am by no means perfect. I am by no means...normal.

Saturday, August 8, 2009

"That's how we like 'em."

I LOVE LILAH!

Exactly how she is.
I am SO, utterly, unbelievably TIRED, flat out tired of the comments people make about her.
I counted today. Just today. I counted 19 people. 19 who made comments, and NOT pleasant ones I might add, about Lilah's weight.
Some of the terms they used:
  • Tubby
  • Chunky
  • Hefty
  • She's a BIG girl
  • Wow, that's a BIG baby

and these are just a few.

Now, the people who said these comments are suppose to be people who care about me, us,etc.

They did NOT say them lovingly. They said them because Lilah is a healthy baby, not skinny, and isn't struggling to gain weight. They said these comments and they hurt me.

I also saw the curiosity. NOT good curiosity. Those who have not seen her, held her, and stared at her eyes. I HATE THIS! Please don't look at her like a science fair project. I understand you are interested. But, I do not want you to use my child to tame your curious mind. No questions were asked. Just that look. That, "Oh, I am SO glad its not me" or the "I feel bad for them" or "Maybe if I ignore them it will go away."

I have had many conversations with these people. They are not strangers. Far from it.

They looked. They commented. They saw. Then...they ignored us like we weren't there.

PLEASE do NOT feel bad for me....or for Lilah.

I LOVE LILAH.

Big, small, sight, no sight.

Instead of getting defensive. Mad. or Sad at the comments about her... I said,

"That's how we like 'em."

*Then I got in the car and cried!*

Thursday, August 6, 2009

I'm gonna get you..

I just had to share what an incredible laugh Lilah has:

video

Now, didn't that just make your day?

Wednesday, August 5, 2009

She said it

video

Did you hear that?

My heart just jumped for JOY!

Improvement

After being excited at Lilah's improvements.

I just knew her PT would be happy at how far she has come.

video

Not so much. It was almost as if it wasn't good enough.

Lilah has a double ear infection, sinus infection and is trying to cut her first teeth. Normally a very agreeable baby, she was a little on the fussy side when the PT came. Lilah cried the entire hour. She had actual tears, crying so hard the boogers were blocking her breathing. The PT kept pushing her harder and harder, not giving her a chance to breathe and re-group. Not once did she encourage Lilah while she was sitting, rolling,etc. Just talked over her. Please understand this...I push Lilah. I make her work! But, I have also seen that Lilah responds well to people who praise her and keep a positive approach. So, I have requested a new PT.

I am, by no means, mad at this woman. I just feel like it isn't a good fit for our family.

video

So, in an effort to remain positive. I have attached two videos of Lilah.

I think she is doing a great job...but, I am a tad biased!

Monday, August 3, 2009

Lilah's new cousin

Christian Joseph LeBlanc

We cannot wait to meet you!

Patch Happy



She has done very well.
Lilah has gotten smart.
She took the patch off after about 30 minutes.

Sunday, August 2, 2009

Sometimes it just stinks

I will admit that some days it just stinks that Lilah has a disability. What I mean is ...this:




  • I watch babies, at church, much younger than Lilah do MORE than she does...this is heartbreaking for me!

  • I cannot go through a store, much less, anywhere public, without someone making a comment on her eyes

  • Alex, Sammie, and Eli ask frequent questions about why she has a PT(physical therapist) and a VT(vision therapist) They ask me why people come to the house for her, is it working, will her eyes be "fixed", and when we go to Atlanta is Dr. Lee helping her

  • Lilah will know NO different... I KNOW that.

I just get sad, sometimes, for her. For Lilah. I want to take it from her so bad. I would give my eyes to Lilah...in an instant. If there was a way she could have mine...I would do it. I would take my eyes out myself and hand them over...no hesitation!


People can be so mean sometimes. None of us are perfect. God created us all different. I just get very frustrated by the people who find it necessary to point out others flaws. Have they looked in the mirror? I know that God will judge them. I know that God already has them taken care of. I wish he could take the pain away from what they say and how they act towards us.

Sorry to be so down....must be the pouring rain that has me in a funk.


Changes

As you can probably see, I am changing my blog for the better. Please bear with me... it may be a little while before I figure it all out. Thanks!

Saturday, August 1, 2009

Patching Day Two...a REVELATION.

Lilah kept the patch on for 53 minutes. I took a couple of pictures. Let her play on the floor. And then, I got on the floor with her and had a very eye opening moment.


Lilah can see the light from the camera. BUT she doesn't track well, nor does she see objects.
I pray that the FML will clear her right eye and that the pacthing will strengthen her eye. I pray that when we return to Dr. Lee on 8/27/09, that she will have more vision from that eye.