October 5th, 2011

I dropped Noah off at daycare and went to work as usual. Once I got clocked in and settled I went to sit with a co-worker to train some more. As I sat trying to pay attention to what was at hand my phone rang......8:23......not a familiar number...I answered........

"Hello.... Lauren???"

 "Yes", I answered.....

"This is Dr. Benedict...."

The first thought that ran through my head was Oh No.....if this is the Doctor calling instead of the nurse this can't be good....

She then said that the nurse had forwarded my message on to her and she was returning my call since I had some questions. I told her my concern was Noah having surgery and not knowing a definite diagnosis. I was nervous about the anesthesia and asked her if I just needed to make the ENT and Anesthesiologist aware of the suspected diagnosis...

Well, she said...instead of keeping you wondering I am going to go ahead and talk to you before you guys go see Dr. Swoboda......... The results of the test are back and it is positive for SMA...

My heart dropped.....

This can't be happening....Is this a dream???

I sat in silence and she asked if I was okay. I began to cry and told her that I was definitely NOT ok.

 My mind raced......Are you kidding me? Of course I'm not ok. You just told me my son has this terrible degenerative disease that will greatly affect his life and you ask if I am ok....

She went on to tell me how great Dr. Swoboda is and that they definitely wanted Noah to go ahead and get tubes. She said she was sorry about the results, told me what a beautiful little guy he is, and that she would have a social worker get in touch with me.

Next thing I knew I was surrounded by my coworkers. They told me how sorry they were and hugged me. It was nice to have their support, especially being at a new job.

I waited until lunch to call Lane. He took it unexpectedly well....I know he was just trying to be strong for me.

The day went on for what felt like an eternity as my mind raced. So many thoughts, feelings, and emotions.

Why our Noah?

I felt anger, resentment, sadness, confusion, numbness.......

What do we do now??

I look back at Noah when he was seven months old. We joked that he was going to walk before he crawled. He would stand and take steps as though he was going to take off running. Now we know he will never walk. The thought of all the things he will not be able to do and all the things he will have to endure medically is gutwrenching. There are no words to describe the pain we feel..