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!)