The cold HARD truth

Yesterday was a very long day...physically but more than that emotionally.

We took Alex and Sammie to school, left Eli with GaGa and GaBill , and drove to Atlanta for Lilah to see Dr. Marc Greenberg: Pediatric Opthalmolgist.

Lilah's was amazing the whole day.

Lilah babbled in the car the entire way to Atlanta....except for the small catnap she took. When we arrived at the Doctor's office, we filled out the paperwork and waited. We were taken back to the exam room and Dr. Greenberg came in. He said he wanted to get her pressures first. He got her pressures VERY quick and in a totally different manner.She didn't cry, flinch, or move. Her pressures were great. (15, 18) But Dr. Greenberg said that that means that the Trusopt is working and she obviously needs it...if not her pressures would've been around 10. He said after seeing her chart and diagnosis he expected them to be around 35, so at least her pressures were within normal range, even if on the medication. He asked me to put Lilah on one knee and we placed Lilah's head into the hole for him to look at her eyes under microscope. Again...Lilah did great. She didn't cry, move, or scream. She sat still and let him look into her eyes.

He pushed his chair away and said he was done. He began writing and writing. I began nervously asking questions. He told me that he wanted to dilate her eyes and then tell us what he thought.

Next, he placed the dilating drops in her eyes. We were sent back out into the waiting room, and watch her pupils get REALLY big. Lilah was still in a great mood. After about 40 minutes we were called back into the room.

Dr. Greenberg looked and looked at Lilah's eyes. He used different tools to see inside her eyes,he used a magnifier, placed lenses over her eyes and looked....and looked...and looked.

Then he got very quiet and sat down and wrote, and wrote, and wrote.

VERY quiet...all we could hear was his writing.

I couldn't take it anymore....

"What did you see?" I said.

He stood up and pointed to the eye diagram beside of us. He described what he saw and her condition.

Lilah's left eye has Sclerocornea. Lilah's right eye is definitely Peters, with a variation of Sclerocornea on the peripheral. NOT nomal for this condition.

He began to talk to us about transplants... and I got nauseous. He told us how the corneal transplants only have a 20% success rate, and how if it were his child with one eye with Peters...he would NOT do a transplant. Relief. Then...here comes the truth.

Lilah's left eye...the clearer eye....still has significant cloudiness on the back layers of the cornea that we cannot see with the naked eye. Lilah's right eye is still very cloudy, smaller than the left, and it has a much more narrow chamber and NOW...the hard part...her brain has already begun to "shut it off."

I asked what her acuity is...since many of you have asked and I was interested myself. He said...that is really not important right now, but her right eye(the worst) maybe 20/400 or 20/200. He said her left could be anywhere from 20/100 to 20/60 but that is a HUGE variation.

Lilah is and will always be legally blind...at best. We knew this. I have blogged about this in previous posts. Hearing it...and seeing it...and having it spelled out in black and white are very different.

Now..to make myself very clear.... Lilah will never see like I do. Lilah, if we are lucky, will be able to see "the food on her plate and walk around in her environment without knocking into things."

In order to TRY to help the clearing of the cornea.....Dr. Greenberg is switching Lilah's eye drops. Lilah has started Lotemax 3/day. He said that the Lotemax has less side effects than the FML.(cataracts,etc) He said that I must increase Lilah's patching to 3 hours/day! He said that we need to get the brain to register the right eye, even if it is JUST light, so that if something were to happen to her good eye, she could at least see light and dark. He also said that sometimes these eyes will clear on their own and that many times Drs. jump to surgery too fast. He said that we also do NOT know what God has planned for her eyes!

Now...I am faithful enough. I believe in miracles. I will NOT settle for this. I will NOT settle that the Lord is done with her. I will NOT do it!

He's NOT! I know it. I know...as I type this...tears streaming down my face...I believe HE WILL HEAL HER!

I will NOT give up...NO... NEVER.....NEVER....NEVER!

The Lord is true and faithful. I am HIS servant. I trust HIM. I do NOT understand HIM, but I TRUST HIM! I am weeping. I am NOT going to accept this diagnosis as final. My God can and WILL perform a miracle with her. I HAVE to believe this!

Many of you have asked what you can do to help. I will tell you EXACTLY what I need....

Please PRAY. Do NOT stop. Please commit to praying for Lilah daily. Please commit to praying for her healing. Please...even if you have NEVER prayed before. Even if you think you do not now how....PLEASE.....PLEASE pray for LILAH! You will be amazed at what the Lord will provide for YOU if you trust HIM and pray. I am begging you. As a weary mother who NEEDS this....PLEASE pray for her...and for me. I need you to help me. Please do NOT give up.

I HOPE in the Lord and TRUST in HIM!

Matthew 19:26Jesus looked at them and said, "With man this is impossible, but with God all things are possible."

Facing the giants

Today Lilah is "facing the giants."

(click here for more info on the title)

At 1:20 pm today Lilah will be seen in Atlanta by Dr. Marc Greenberg. He is in practice with Dr. Lee, but he is at the Scottish Rite Location. Dr. Greenberg is a Pediatric Ophthalmologist.

Lilah will have extensive tests done today. We were told to expect to be in the office for "several hours." Lilah will have her eyes dilated (a first), pressures checked, thickness checked, and she will have an ultrasound of her eyes to see if her retinal and optic nerves are working. (She had one done at 4 weeks old)

This morning I come to you...Lilah comes to you....in NEED of prayer.

Father,

Oh merciful Lord, please be with us today as we drive to Atlanta. Please guide us and keep us safe. Our hearts are heavy today as we are facing a mountain of tests and are in need of concrete answers. Please Lord, PLEASE, I beg you to hear my heart and know what I need. I need AMAZING results today.

I am asking for good, low pressures. I pray that there has been no damage from glaucoma. I pray that Lilah's optic and retinal nerves are in tact. Lord, please allow her corneas to be thinner. Please remove all the cloudiness from her corneas. Please allow Dr. Greenberg to be able to see that BOTH of her eyes are reflecting to light. I ask that the ultrasound will give results of no damage, no problems with her eyes. Lord, you know that today I am so weak. I am so exhausted from worry, stress, fear, and unknowns. I ask that you remove the stress and worry and replace it with your peace. I need your peace Lord. I need you to help me to trust you in your path and plan for Lilah. I am beyond scared for today. I am beyond scared for her future. I need you to rescue me. I need you to lift Lilah in your arms and carry her through this journey. Lord, I need you to carry me, too. I cannot do this alone. You are my source of strength. I am, admittedly, frustrated with the path that I have been on, but I wouldn't change it for the world. I love you, Lord. I know, even though I do not understand, that you love me and want what is best for me and for Lilah. As hard as it is to comprehend that...I still know it. In my heart...I KNOW....I know you will protect Lilah. I know you will protect me.

I am asking for the miracle today.

I am asking that today be a great day. I need, I need so much to hear some AMAZING news. I ask that Dr. Greenberg be a kind, loving, Godly man with HOPE. I ask that he know YOU Lord. I ask that his words will be those that YOU want us and need us to hear. I ask that you guide Dr. Greenberg and his staff as they test Lilah today. I am asking for answers to some of our hardest questions. I am asking...for a miracle...that ONLY you can provide. I am asking for safe travels. I am asking that we be able to make it to the appointment and that the flooding will not keep us from what we need to hear today. I ask that you Lord, will watch over us and guide and protect us and keep us safe.

Lord, even though I am weary. Even though I am hurting, even though I do not understand...I still love you , Lord. I will still love you, Lord...even if this path doesn't go as I hope. But, my faith is mighty and you are stronger so I trust that you will provide for Lilah.

I thank you, Lord. I thank you for what you will do today, for what you have done, and what you have yet to show us. I thank you for all of the people reading this prayer and reaching out to you for Lilah today. I thank you that you are using Lilah for your good works. Even though I don't "see" why I still believe....believe in you and your majesty.

AMEN!

Thank you... from the bottom of my heart.

The prayers are....

PRICELESS!

Can we catch a break?

This blog has been my ONLY source of relief. This blog has given me courage to speak words that I would not say in the presence of others. I love the fact that it is MY blog and I have the right to express myself as I choose. That being said...I have refrained from blogging the past few days for the old saying..."If you can't say anything nice, don't say anything at all"...BUT

I need to continue to use my blog as my therapy.

I am very overwhelmed right now.

VERY!

In just 2 days Lilah will be seen by a new Doctor. (Not a replacement for Dr. Lee. An addition.) Dr. Greenberg is a Pediatric Ophthalmologist who is in practice with Dr. Lee. Dr. Lee wanted Dr. Greenberg to be in the OR while Lilah was under anesthesia and they could BOTH do a thorough exam on her. Dr. Greenberg said he does not want to put Lilah under if it is not necessary, SO...He will see her for the first time this Wed. 9-23-09.

I am petrified of this visit!!!

All I know about Pediatric Ophthalmologists is from our experience with the dreaded Dr. Devaro. He has no heart, no compassion, no hope, and a terrible bedside manner. I wouldn't recommend him to anyone. Not even my WORST enemy.

So, I am fearful of the new Doctor. WHAT will he be like? Will he be as cold hearted as Devaro? Will he see only negatives in Lilah, like Devaro did? Will he tell us that the tests reveal damage to the optic and retinal nerves? Will Lilah need glasses? Would they help now? Would Lilah benefit from the glasses? Will it be another matter -of- fact visit? Will the truth be revealed about Lilah's eyes?

On top of ALL of that...(and to be honest there is SO much more I am feeling and thinking, I would take up hours if I wrote ALL of it).....Lilah had PT this morning. Her PT was watching her and asked me if I noticed that Lilah seems to "go away" and then return. I told her that I notice more at church, in the nursery with the bright lights and the crying babies that she gets very quiet and sits still, closes her eyes, and listens. Almost as if it is too much with 2-3 babies crying at once. Maybe she is over stimulated and it is her way of shutting down like a protective mechanism. Her PT noticed her "go away" and come back several times this session. She said she thinks Lilah should have a neurological consult. She said it could be nothing, but it wouldn't hurt to get the consult.

What did I do?

I cried.

Now for those of you reading this, you should NOT be surprised at all. I am a cry-er.

Then, poor Laura, she felt bad. I told her not to. I said I just want to know. I have so many questions about Lilah. I just want some answers. I want to know what is wrong with my baby! I also told her that I am emotional. I am overwhelmed and to be flat out honest...I am exhausted. This emotional roller coaster has done a number on me.

There hasn't been any concrete diagnosis for Lilah. They keep changing.

I am so tired. I am so worn out. I need a vacation from all of the appointments, PT, VT, school, car problems, financial worries, etc. I wish I had the money, and Aaron had the time, that we could take our kids away from this city and refresh our brains. This Mama needs a break and I NEED some answers.

I need to know what is really going on with Lilah.

What is wrong with her eyes? Can it be fixed? Have I messed up by not pushing for the transplant? Does she have a neurological issue? Does she have seizures? Does she have a syndrome of sorts that the blood test did not find months ago? Should she been seen by a geneticist? Am I missing something? Is there something I should know that I don't?

I want these answers because I NEED to know. I need to know what to do to help Lilah. I need to help her anyway I can. I need it in black and white...and then I will attack it with everything I've got! I will NOT settle. I will go to the ends of the earth for her. For ALL of my kids.

Knowing is half of the battle...BUT...it will NEVER...

NEVER change the way I feel about Lilah.

I love her and I will love her ALWAYS.

(maybe this is why I do not have patience for people who have forgotten us. they have proven by their lack of concern for Lilah that they will only love her if she's "normal"...to those people who do not know Lilah... who are too consumed by their perfect little world...YOU are missing out! Lilah is the most amazing, patient baby...EVER! YOUR LOSS for not knowing her! But, if you want to get to know her...I welcome the love, support, prayers, and kindness. ALL I ask is that you come to us with NO judgements. No phrases. No fix it. Just LOVE us...LOVE her exactly how she is. Maybe you could learn a few things about love from her. She's taught me...more....more than I ever thought I would need to know. Lilah IS love!)

Ick

For the past several days I have had no voice. All four kids are on breathing treatments twice a day. I am going to attempt a nap while 2 are at school and 2 are napping. Praying for the rest I so desperately need! Will post when I have more energy...um rewind that. I will post again later, if I wait until I have energy I may never post again.hehehe :)

A sick little girl with so much to face

Lilah has a double ear infection, an upper respiratory infection, AND...excuse this personal part.... she is having some issues going number two.

All of this after I was at the hospital with Sammie for 2 days, and I am minus a voice. Two days without a voice is a little hard to parent 4 kids. Poor Lilah. She can't see me very well....and now she can't hear me. She is NOT a happy camper. She didn't sleep at all last night. Breathing treatments weren't helping the cough and she had a lot of pain from the ear infections.

I pray that we will get better very soon. BECAUSE...Lilah has a BIG day next Wednesday.


Lilah is being seen by Dr. Marc Greenberg at Scottish Rite. He is a Pediatric Ophthalmologist. Dr. Lee has referred us to him. Dr. Lee wanted to put Lilah under anesthesia to perform a very extensive exam, but Dr. Greenberg wants to try all of the tests in his office first.

Lilah will have her eyes dilated (they told me this, alone, will take 45 minutes), she will have her pressures and corneal thickness checked, they will check her acuity, she will have an ultrasound of her eyes. Dr. Greenberg will be doing all of this while Lilah is awake. OR at least attempt to. His office staff told me that this visit will "TAKE HOURS!"

I am SO scared for this visit. This is it. We will know. We will really know.

On 9-23-09, just 2 days shy of her 10 month birthday, I will know what type of vision Lilah has. I am reeling, racing, questioning, thinking, praying, worried...scared out of my mind.

Have I made the right choices? Have I asked for the right prayers? Is it the best thing that Lilah has not had the transplant? Would she be able to see right now if we had gone ahead and done it? Does she really have Sclerocornea and it is a good thing we did NOT do the transplant? Will she end up with a transplant anyway? Does she have early Glaucoma symptoms? Has Glaucoma gotten to her retinal nerve, optic nerve, and damaged them both without warning? Have I failed Lilah? Did I not do what was in her best interest? Have I been so scared of surgery that I have limited her sight....FOREVER?
Have I messed up? Should I have gone for more opinions? Should I have asked for more prayers, more anointings, trust? Oh Lord...what have I done here? My mind is a ball of mess! I am so fearful. Satan has a grasp on my mind and will not let go. Lord, keep that evil being from me!!!

Philippians 4:6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

Lord,
I ask you to give me your peace. Wrap me with your peace and comfort me with your grace, mercy, and help me to trust you. I am so fearful for Lilah. I am so fearful for what I will hear next Wednesday. Help me to trust that your will is the right path for Lilah. This is not easy for me. Trusting you is easy, but laying Lilah at your feet and asking you to protect her and giving her to you fully is SO hard. I know she is your child first, but I have such a hard time understanding that you REALLY want what is best for her. I know you love Lilah. And as hard as it is to say...I know you Love her more than me. I do not know how that is possible because I love her more than I could ever express by words, touch, or emotions.
I come to you Lord...begging you to take this visit and give us good news. I am not equipped with the strength to handle the bad news right now. I feel so broken. I feel so lost. I feel so helpless. I need your strength. I cannot do this without YOU, oh Lord. PLEASE help me. I am so burdened. I am so full of fear. The unknown is eating me alive. I cannot breathe for the fear has overtaken me. I need your help, Lord. Help calm me and give me peace.
PLEASE Lord, please give Lilah vision. Please allow Dr. Greenberg to give us your words. Please let him be a man who loves you. Please let Dr. Greenberg have a heart for you. Please let him be inspired and in awe of Lilah. Please let him be moved by her story and her strength. Please give Dr. Greenberg and his staff the tools to make us aware of Lilah's acuity and field. Please allow there to be a way for Lilah to have more use of her vision if by glasses, contacts, or other methods. I ask for her pressures to be normal. I ask for her corneas to have thinned even more. I, along with many others reading this, beg of you to give Lilah complete healing from this pain. Watching Lilah struggle to try to see hurts me so, Lord. You know the pain I have Lord. You know I am still dealing with all of this. Lord, please help me to trust you on this path for Lilah.
I thank you, Lord, for trusting me with Lilah. I pray that I am honoring you in the way I Mother her.
I love you Lord and thank you for hearing my pleas. Please hear my cries for help and heal Lilah.

A little behind

I am sorry for not posting in the last few days. Sammie, my four year old, was in the hospital with an upper respiratory infection. She is home now and is on the mend. I will be posting soon. Much Love.
Katie

Comments

"God gives special children to special people"

"God doesn't give us more than we can handle"

"It could be worse"

These are some of the comments people make to me....ALL the time.

These comments make me want to....

I did not ask to be special. I am very, very aware that "it could be worse." I am SO tired of these statements. I know people say them because...they don't know what else to say and they feel the need to fill the quiet void with random canned phrases.

The people who make these statements do not have a child with special needs. These people live in Italy. They do not live in Holland; where I live.

I live in this world. I deal with this...every minute of every day. I do not need people to tell me how to be, act, think, or feel...especially if they do NOT have a child with special needs.

I, actually, had someone comment, "But its just her eyes." Are you kidding me? They have NO idea that my child is delayed because she cannot see the toy to roll over. Why do "normal" babies crawl? Because they want something. Lilah isn't crawling, scooting,etc. because she does not know what is there.

The comment "its just her eyes" is more hurtful than anyone could possibly know. These people are not with me when I lay Lilah down next to other babies and see how different she really is. The way she holds her head in fluorescent lighted rooms(because the light is SO bright it blinds her completely), the way she closes her eyes when she's in the shopping cart at Wal-Mart...and 6 people stop me to ask if she's sleeping. I want to say, "Yes folks, Mother of the year award goes to me for letting my child sit up, holding the cart, and she sleeps all at once. I know I sure do have a talented child." But instead I politely say, "No, she's not sleeping, she has a vision impairment." AND you'd think that would be good enough, but noooooo...THEN people's curiosity gets going, "But her head is down, she must be sleeping."(yes, I knew that they knew her better than I) I say, "No, her null point is very low in the periphery of her eye." and they say, "HUH?" and I say, "she can only see a very small amount out of the corner of her eye." and then the kicker comes in..."But that's good enough, right?" I would love to go into a store and not have to stop and answer so many questions. I am just not there yet. I am a VERY busy Mother of four. No, I do not sit home all day and eat ice cream and watch soaps. I am usually running in the store, with all four in tow, trying to get it all done in a matter of minutes. The last thing I need to do is tell people that Lilah has this delay and that delay.

"God grant me the strength to answer the questions of these people, because YOU know how hard this is on me."

This is what I pray as I am listening to their questions. I know, yes, I really do...that Lilah's testimony is one that is being shared around the country. (Thank you for those that continue to pray for her daily) I am so grateful for that. I know that so many people need to hear this story...AND I want them to. Sometimes, the telling...the actual verbalization... just gets to be too much.

The canned comments and responses are not comforting in anyway. Sorry, they just aren't!

What a Mommy needs, a Mommy like me...with a child who lives in Holland really needs, is someone to listen. Not a fixer, a talker, a manipulator,etc. We need support. The kind of support that comes from a great listening ear.

James 1:19 My dear brothers, take note of this: Everyone should be quick to listen, slow to speak

The people who have helped me the most are those who have been the ones to not say a word. They know that they are not in my shoes. They don't try to be. They just listen, be there, and allow me to feel what I am feeling. I must process this. Each day is a journey. Each day there is something new.

I am So glad that the counselor from our church told me that I am allowed to feel this way. THANK GOD he told me it was OK to mourn and grieve, ask questions, cry, vent, etc.

So, I guess my point in all of this was to teach those who don't know... that it is better to just be there for a parent of a special needs child. Words are not that comforting.