Surgery awaits

From the time of Lilah's diagnosis I have been dodging surgery like a runaway train. I knew it was bound to catch up with us....but the fear of surgery, putting your child to sleep, allow someone to cut on them, etc, etc...looms overhead daily.

As hard as I tried to fight it, pray against it, do everything in my power, and BEG God to help me to trust Him, I lost the battle. Or THAT is how it feels right now in these very raw moments.

Angel Flight was unable to get our mission filled, so we planned the drive out last minute. I made sure my friend Michele was ok with watching the older three for 13 plus hours, I filled the car with gas and had the oil changed.

Yesterday morning as I came home from, my run, Aaron met me outside and told me he had made an "Executive Decision and that we were taking the older three with us and would go to the Aquarium for a science field trip after." Happily shocked, I called Michele and hurried to get all the last minute details in order.

As we drove, I prayed and prayed. There were moments when we saw the clocking ticking and we were farther away then we needed to be. I increased my speed and carefully drove through Atlanta traffic so we could make it to the appointment on time.

Yesterday Lilah saw Dr. Greenberg in Atlanta again. We hadn't seen him since February. Irene, his nurse, came in first asking this question and that, watching Lilah's eyes closely as she wrote down information for Dr. Greenberg. Next she told us that it has been a year since her eyes were dilated. So, we held Lilah tight as we fought to get the drops in her eyes. Man, my little fighter puts up one STRONG battle not to have her eyes messed with.

We were sent back to the waiting room to allow her eyes time to dilate properly. Then about 30 minutes later we all went back into the examine room and waited for Greenberg to enter.

When he came in he had the case with him. He talked to us about her vision, tried many tests with her, talked about how her left eye looks clearer. I told him how I believe that the patching is working. He asked me how many hours and I said 5 hours a day like you said. He said, "No, I told you to work up to that." Well, I got there, and stayed there to work her eye.

He attempted so many things with Lilah, and some he got, but most tests...she resisted harder than I had ever seen before.

I knew in my gut what was coming.

Then he did one last test and tried to get Lilah's right eye to look to the right while her head stayed facing forward. Her right eye...only goes so far. Due to the way it is turned in, she cannot see far right. Her left eye does all the work past a certain point. He did notice that looking dead on Lilah looked him right in the face with her right eye.

Then he wrote down numbers and mumbled things about 35 and 40 and asked if Lilah had any other medical conditions. I said, "well, she has a deletion on her 8th chromosome, but no one, not even Flannery in Augusta can tell me what that means." He said, "no, I mean heart or lung issues."

And I knew.....he was prepping her chart for surgery.

He told us that no matter what happens Lilah's right eye will never turn to the right fully and will always turn inward, toward her nose, without surgery and re-alignment. I said, "But, I have been patching her daily for 5 hours to prevent that." He said, "The patching doesn't do anything for her muscle. It just makes the eye work and strengthens it so the brain won't cut it off." And I said, "So, even after she has the muscle repair surgery, I will still need to patch her?" YES, was the answer.

Aaron and I looked at each other. We kind of felt like patching and the benefits were never described correctly for us. And I felt like I had failed. I know that THAT is not the right way to feel, but I feel it.

Dr. Greenberg explained that this surgery is so easy. It is outpatient and only takes 25 minutes. He does them all the time. He starts on children as early as 4 months of age.

But, this is Lilah. This is MY girl.

So, I asked more questions. I could tell he was getting annoyed, but I told him..."THIS is new to me," I said. " I have heard good things and bad things about the surgery. Tell me what the benefits are to doing it now."

He said that no matter when we do it, now or at 5, her eye will still turn in like that. Again, I asked about patching. He said that the patching allows the brain to use the right eye.

So, we made no concrete date of surgery yet, but Greenberg wrote in his chart that she needed it.

And here we are, in the waiting, praying, what do we do, when is best, is this the right choice for her, what if they have to do more then one surgery to correct the muscle(which is very possible), what about work days, vacation days, do we wait until the next visit only to turn around and come right back up to do it days later, where do we stay in Atlanta prior to surgery, what about the older three? All questions looming in my mind and ones Aaron and I discussed so many times.

And here we are...not knowing what to do. When to do it. How to do it.

I know, yes...I can say the words and know them that I have done all I can for her, BUT...

I am Lilah's Mama. I want to protect her from any and all pain and keep her safe. There is NOTHING wrong with my emotions. And I MUST feel each and every one of them. I cannot cover them.

I will be asking people I trust what their opinions and thoughts are. I will be gathering as much information needed...and I will do my best not to blame or question myself for what I have or have not done.

I will ask Jesus every minute of everyday to help me to trust Him.

And then Aaron and I will figure out when it is best to make the journey back to Atlanta for Lilah to have her surgery.

We appreciate all of your thoughts, prayers, love, and support. We hope you will love us through all of this. We hope you will understand that we are scared, nervous, new to this, and we are trying to do the best thing for our child. We may not want to talk about it. We may just want to do anything other than talk about it. OR we may want to cry and ask WHY. What we need is support. We need you to be there for us. Hold us as we make he right choice for our child. Some of you may be reading this thinking, "this is a nothing surgery. why are they so dramatic?" Well, to you it may be nothing, but to us...this is our child and it is big. This is our mountain and path to climb with Lilah...as well as all the delays she has. We NEED you in our lives. We need you not to pull away from us. We need you to love us, listen, and be there, even if you have NO idea what to say. Sometimes your presence is the BEST present.

Thank you for never giving up on us. Thank you for loving us. Thank you for understanding and trying to help.

Thank you for CONTINUING to pray for Lilah...and our family. THAT, above all, is what we desire the most.