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

 

We were not to decide then, and were told that a team of doctors was being assembled and I would be contacted about what THEY felt was the best approach. "I HATE NEUROFIBROMATOSIS!" I thought to myself. I clenched my teeth and fisted my hands.

 

The doctor looked at me and put his hands on my shoulder...."We have time, this is not imminent." But all I wanted to do, was to do something RIGHT NOW!

 

We were able to get a copy of Bailey's MRI..which Bailey thought was "Sooo Cool!" She immediately pointed at the tumor and asked, "Is that it?" "Yes" I replied. She stuck her tongue at the photograph and said, "We're gonna get you, sucka!" I just laughed and stuck my tongue out at the tumor too.

 

As we left the office, Bailey looks over at me and says, "I can't wait to get home and blog about this, because I'm not afraid and I want to let everyone know that I'm not afraid!" I stopped her and hugged her. "You are sooo awesome Bailey.....I love you!"

 

Over the weekend I saw Bailey looking rather distracted and lost in thought. "What are you thinking about honey?" I asked her. "Oh just about my tumor and the hospital." she replied. I went over to her and sat down next to her....asking her is she had any questions and told her to try not to worry about this. She looks up at me and bluntly says, "I didn't say I was worried...I'm just thinking about it. Will I get to stay in a hospital? Will I get to stay overnight? I'm actually excited to do something about this, what are we waiting for!?"

 

Yet again, I am blown over by this young lady's outlook on her NF. She really isn't worried or stressed about this and I am so grateful for that. She makes me so proud, and I learn from her positiveness everyday.

 

I love you Bailey Boo. You are going to inspire a nation! You can follow and check up on Bailey, by following her own blog.

www.achildsviewintonf.blogspot.com/