Neurosurgeon Follow-up

Yesterday Lilah had her 6 month follow-up with Dr. Thompson.

I went in to the appointment knowing that Lilah has made great improvements and she is steadily making progress in all areas.

Alex, Sammie, Eli and I walked with Lilah into the double doors. We made our way to the room and we waited for Dr. Thompson's nurse. She came in and measured Lilah's head. Then she told me that Lilah is growing on a perfect scale.

When Dr. Thompson came in he asked me how Lilah was doing. The entire time I spoke I watched as he really studies each move Lilah would make. He was really watching her, but especially paying very close attention to her legs with her AFO braces on.

Then he told me he wanted to repeat her MRI because cases like Lilah's that can be mistaken for tethered cords can either REALLY be tethered, form a cyst on the spine, or more. I swallowed the information and then he said that he wanted to add thoracic spine into the MRI also.

Almost immediately I told him that if they were going to do most of her spine in the MRI anyway, we might as well do the brain again, too.

He told me that we would need Dr. Moretz, the Neurologist, to sign off on that because insurance and medicaid get really sticky when you "add" more to the MRI. Seriously, I thought? Lilah would already be under anesthesia, why NOT get a picture of what all of her brain and spine are doing.

I told him those words and he agreed but explained that all the new "rules" make their jobs harder. (UGGGGGGG!)

Lilah's case is quite unique. ALL of her.

No one can tell me what her "chromosomal deletion" means. No one can explain what she sees, or doesn't see. No one can tell me why she does or doesn't do things.

I came home and immediately called Dr. Moretz office. I left a message, but no return call has been made. I also called Dr. Greenberg's office AGAIN, trying to schedule Lilah's surgery, as well.

I am about to share something that I NEED to get off my heart. I am including it here because I am filled with SO many emotions right now.

I don't have the answers about Lilah. I had EVERY test done when I was pregnant. EVERY one. ALL tests came back...NORMAL.

HA! Normal. Normal is NOT what I bore. Normal is NOT what I hold and snuggle. NORMAL is not what my life is. NORMAL is SO overrated!

Aaron has said from day one that he didn't really care about Lilah's vision as long as there was nothing wrong with her brain. The more time that passes. The more we learn about Lilah shows us that Lilah may have something "wrong" with her brain. Her fingers don't "look" like other children's fingers. Her feet don't turn the same way as other children. How she "behaves" isn't like other almost 3 year olds.

This morning I watched a friend's children for her so she could go to an appointment. I LOVE her kids. LOVE them. While I was playing with them, I was HIT by that truck again. The baby was doing things that my toddler doesn't. The baby.

My eyes just filled with tears.

And it hit me...yes, this is hard for me. I cannot lie. It is downright painful sometimes. What is the hardest part? Doing it all alone. I don't get a break from it all....to see a different perspective.

It seems as if EVERY day there is a new battle I must fight for Lilah. The walker, SSI(now they have removed it from her and are asking for $1100 back), street signs to protect her, therapists, surgeries, MRIs, medicaid/no medicaid, braces, PSI forms/no PSI, Drs/No Drs.

I don't get a break. I don't have a friend who I can call who really gets it. I have people who try to get it, but have NO idea.(I ADORE those people and need them desperately) I use this blog to vent my feelings to get it out before it bottles me up and I explode.

Before I go on...I LOVE Lilah. Don't be fooled thinking that I don't love her. I do...MORE than you know.

As Bethanny's youth director says in the movie "Soul Surfer" : Sometimes its hard to see the big picture when you are in the storm. (or something to that effect)

I know that God is using Lilah for HIS glory. I KNOW that she is changing the world. I know that she is changing me. I KNOW this!

But, I am IN this storm with her alone. I am doing the battle...alone. And most days, MOST days...I hit the bed and almost pass out from mental exhaustion. I must always be on my toes for her. NEVER stop. NEVER rest. NEVER take my gloves off. I am lonely.

There...I said it.

I am downright LONELY!

I need someone to talk to who will GET IT!( I love my family and friends, but most really have no clue and try as they may...they don't know...and I KNOW they want to help...and I am grateful for that. YES, I really am, but...) please understand...I am smart enough to see the big picture. I know how, why, when, etc...

I just don't want to be told, AGAIN, by someone who does NOT live this life...what perspective I should look at. I KNOW those perspectives. I just want someone I can VENT to...who will LOVE me...and not judge me for my thoughts sand emotions.

Today is not a great day. Tomorrow will be better...I am sure. Each and every day I will continue to fight and never give up for Lilah. I am determined to keep going....

But, I am tired. Mama Bear is weak today...and today I would like a little piece of normal, but normal is overrated and is not the life I lead. So, I will cry...and ask God to hold me close because HE is the only one who can really comfort me.

Jesus,

PLEASE come. Right now. PLEASE come. Hold my heart. Help me. I cannot do this without you. I need you. I am SO weak today. I am tired. I am lonely. I am sad. I am at a place that only YOU understand. I love you, Lord...even in the midst of not understanding.

Please come and hold my heart.