Sunday, April 11, 2010

Motivational Monday

As we sat in the waiting room, I thumbed through a magazine, peeking every now and then to my kids who were playing quite nicely, in the nook, across from me.
I was nervous. I'm not usually like this. I closed my eyes and said a silent prayer, that the news we would get today would be good news.

The nurse called Bailey's name and we all headed back into the exam room. Brooklyn and Riker slid their hands along the wall and jumped to avoid the cracks in the floor.

"You okay Mom?" Bailey asks me. "I'm just thinking about you, sweetie." She puts her arm around my shoulders and says, "Well, I hope you're not worried, I mean what's to worry about, Mom?"

Bailey amazes me everyday that I spend with her. She struggles in school, and has very few friends, but always has this way of comforting me...and looking at the bright side of most everything. "I know everything is going to be okay, no matter what!" she continued to reassure me.

Wasn't this MY job? Wasn't I supposed to be comforting her?

She walked boldly and confidently into the room, where she was asked to sit up on the table. Brooklyn and Riker headed for the chairs at the window sill. I stood and answered some questions, to make sure we got a full history in Bailey's chart.

"How was the pregnancy?" "When was Bailey diagnosed with NF?" "What are the symptoms that Bailey is experiencing?" Answering all these questions made me feel uncomfortable, but I knew it was important.

Bailey was not officially diagnosed with NF until she was 14 yrs old....and even then- we were told to "watch and wait", since there was no cure for this dreadful disorder. For 14 yrs, we had no real issues, and required no special treatment for her NF, except in school.

I watched as the nurse performed a full Neurological exam on Bailey...and she did well. Blood pressure and pulse were taken, as well as a look into her eyes. The nurse noted the exotropia and asked if we knew about it. (We do and are seeing an Ophthalmologist)

The doctor came in and sat down next to me. We talked about the tumor that was found in Bailey's brain, and he assured me that this was a slow growing, BENIGN tumor, but I still began to feel this overwhelming sense of guilt.

Bailey hopped down from the table and slid next to chair next to me. She saw the worry in my eyes, she understood that even though this was a benign tumor, it was still very serious. She held my hand and whispered...."I love you mommy, I'm going to be okay!"

The doctor smiled at this and raised his eyebrows, as if to say, "WOW, I'm impressed!" I smiled too.

The doctor went on to tell us about the placement of the tumor and all the possible effects, that HAVE already occurred and what COULD happen. "Hearing could be impaired and since this tumor is right on a nerve that control facial muscles...her face could become deformed." Bailey squeezed my hand tight.

We talked about possible treatments 1) Watch and Wait 2) Open Surgery to remove the tumor  or 3) Lazer treatment


  1. This needs a warning for tissues! Bailey's a brave young woman. ((hugs)) to you all.

  2. You and your daughter are so inspiring and so brave, you should be so proud of the little girl you have raised into an amazing little lady!! I am proud to know you! My son Dylan is only 3 and I hope he is as brave and insightful as Bailey is as he gets older, he has tumors on his spinal cord and brainstem!!!xo
    Mindy Brain

  3. Todays blog brought tears to my eyes. I wish we could all be like Bailey and have her attitude and spririt. You've raised a wonderful girl in her.

  4. I have been thumbing through your blog almost all day. I feel like I know you. I have loved getting to know you through your writings and I wish you and your wonderful family all the best that life can bring!


  5. So inspiring, so wonderful! Kristi you and your family are amazing! When I get down about my son having mild NF, I think about you, and all that you go through with 3 kids having NF and you having NF too.
    I am so glad I got meet you in person!!! You are just as beautiful OUTSIDE as you are on the inside!
    Thank you for sharing your life with the world!