I knew it, but hearing it still stinks.

Yesterday, only 3 days after I had surgery to remove cysts, endometriosis, and severe adhesions that had attached both sides of my bowels to my abdomen, we heard the MRI results.


I could barely walk, let alone sit in the chair comfortably, but...I was determined to be there. Aaron carried Lilah, held my hand and we made our way to Dr. Moretz office.


I knew that this was not going to be the results we wanted to hear. I had a very strong gut feeling that we would hear news that would change our course one more time. Not that I was being negative, but I knew. Deep down inside I knew. I have said all along that I feel as if everyone knows something about Lilah, but they won't tell me the truth.

Dr. Moretz said that her brain MRI showed that her white matter didn't all form the right way. It can be "somewhat common" however, because Lilah is so delayed it shows that she is more "globally delayed" or that "R" word that we feared.

I am GRATEFUL I followed my gut and asked for the lumbar spine MRI, because my intuition was correct. Lilah has tethering of her spinal cord. Dr. Moretz said Lilah does not have spina bifida, but the tethering is there. She has referred us to a neurosurgeon. She told us to get several opinions before we decide on surgery.

Surgery. That word alone scares me...but on my child's spine...shakes me to my core.


I didn't hear anything shocking. I heard what I anticipated to hear. Aaron didn't say much. He got very quiet. Poor guy had already been under so much stress with me just having surgery and now he was hearing that once again his baby was even more different.

The ride home was so quiet. The radio was on, but it seemed as though we were riding in silence. It was deafening. At some point I wanted to snap my fingers and the entire day not have happened.

This is how I feel: This course with Lilah never stays the same. There has not been a "here, this is your child, this is what she has, this is how you deal with it." There is a constant change. There is a constant up and down. The road never stays the same. We keep getting different and new information. THIS is exhausting...emotionally and physically. When can we get ALL the information on Lilah, know what we are dealing with and then navigate our path. Why does everything have to change SO much?

I told Dr. Moretz that I was fed up. I told her that we have done all these tests, and have no answers. I told her that we have done the geneticist, the blood tests, Aaron and I's blood, etc, etc. We have tried to get answers on Lilah, but keep getting nothing. She told me she would call the geneticist and see what the hold up was.


At 6:30pm last night Dr. Moretz called. She told Aaron that she was sorry that we haven't gotten any answers, but she is determined to take matters into her own hands and get results. THAT was a big shocker, but was also a HUGE relief. FINALLY, someone with MD at the end of their name wants to help me find answers about my baby.

I woke up this morning in a LOT of pain, followed by a HUGE realization and sadness. I began to cry and get sad, "WHY? WHY? WHY?" My mind began to race all over the place. Why Lilah? Why does she have to have one MORE thing? Why do we keep getting half answers? Why does this hurt so bad? I tried to crawl out of bed. Mind you, I have a swollen belly and I am carrying around an extra 15lbs of water weight and swelling.

I began to be very fearful. I allowed Satan to enter my mind and take over. I allowed him to let me go to that place of hopelessness, fear, and sadness. I allowed Satan to let me be mad at God. But, that is OK. God isn't mad at me that I am mad at Him. God isn't mad that I am questioning. God won't stop loving me or Lilah, even when I am fearful and sad. I allowed myself a long cry and then I felt HIM say, "get up."

I don't know why God has chosen Lilah for this path. I don't know why God trusted her to me, but I do know that I will not give up and Satan will not win. I will love Lilah and be the best Mama I can, no matter the circumstances.

So, even though I feel like death, and look like crud, I will do what I know is the best thing. I will be at SCC tonight and reconnect myself with God. I don't understand why He has allowed all of this to happen to me, Lilah, to our family, but I love Him for giving me Lilah.....just as she is. So,I will be there tonight to praise Him, even when I do not understand.