True Life MTV, Neurofibromatosis

I have to admit, I was a little worried about how Mtv would portray Neurofibromatosis. Would they make us out to be freaks? Would they give misinformation about the disorder? I have seen some of the shows on Mtv....and was thinking the show could go horribly wrong.

But I was impressed. I watched the show with most of my kids. Rachel was funny. When someone on the show said "I have NF", Rachel said, "Wow...I have that too!" Bailey and Riley were very interested in the show too.

During the commercials, my children asked questions...."Why can't they remove all of the tumors?" "Why will the tumors grow back?" and Bailey says, "This makes me feel sad. But these people are still smiling and still pushing through....So will I!" (Another proud mommy moment)

I enjoyed the bits with the Drs...and how the show portrayed the true emotional pain that NF causes. I was so happy with Bekha and seeing the before and afters of the surgery that removed a tumor from her spine!

All in All I was impressed.....

True Life - MTV Shows

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/

Neurologist and French Fries

Ahhh the Neurologist. There's nothing more intimidating, then walking into the doctors office, to receive news about something you know not much can be done.

We know the routine with this...."Let's watch and wait." One of these days, I just wish we could walk into the doctor and hear, "I know exactly how to cure you."

I may never hear this in my lifetime, but I am wishing for my children to be able to experience this.

Bailey is in good spirits about her appnt with the Neurologist this afternoon...I'm not sure if it's because she got a day off from school and promised french fries afterwards, or if she is truly just not worried about what we will hear today. Either way, I'm so proud of the way she is accepting and Thriving with Neurofibromatosis.

Chk out her blog http://www.achildsviewintonf.blogspot.com/

Determination

Motivational Monday

"Every accomplishment starts with the decision to try"

What's the first thing you think of when you hear the word determination? My first thoughts are of my children, who without hesitation, go after what they want, and usually don't stop until they get it. I love them for this...It has taught me to not be afraid to go after what I want.

These last few years, I have gotten up close and personal, with Neurofibromatosis. I have learned so much about this disorder, more than I ever wanted to....and even though it scares me, knowing that this beast is a part of our life, I have this determination, to never allow it to scare my children.

Three of my children are affected by NF. Knowing this crushes me to the point that I feel endless guilt, for adding this, to an already complicated life. But I know, that whatever the NF brings with it, cannot and will not take away my drive, to give my children the best life that I know how to give them.

They are happy and generally healthy kids...who have a spirit inside of them, that just makes me so proud. I will love them to the ends of the Earth and back again.

I am friends with a middle aged mother who has 5 kids. This woman is healthy, and has no genetic diseases or cancers in her family history....But she went on to have 3 special needs children. 1 with severe Autism, 1 who is partially blind and deaf and 1 who is in remission from Leukemia.

A perfectly healthy woman...and 3 special needs children. It just blows my mind. NOTHING is guaranteed.... absolutely NOTHING.

This woman has the weight of the world on her shoulders, but still presses on, determined to persevere....and I think she is doing an awesome job. *You know who you are*

I am so proud of the friends I have...who are choosing to never give up. I know who hard it is to deal with the unknown path of a cruel genetic disorder....I also know how good it feels to stand up to it.

Whatever YOUR fight is...keep going....Keep choosing to beat it.

Thriving Thursday

Well, I think we are finally back to normal, after our wonderful vacation to Florida. The first few days were tough...the kids were waking up at 5 am and all ready for the day! Yikes!

Spring Break is this week, and the kids are enjoying recovering and having no school to worry about.

Coming back to "reality" is hard. I just wanted to stay at GKTW forever. It was such a peaceful place. But maybe that's why it's so special, you catch a glimpse of magic, and learn to appreciate life in a whole different way.

I told Bailey about her MRI results, soon after we arrived home from vacation. We sat her down and explained that the MRI picked up a growth, and we will be going to see more doctors, that can help us understand what will be needing to do.

She stood there, and I was half hoping she would break down, so that I could just hold her in my arms, and let her know she was going to be alright, but she didn't....She just shrugged her shoulders and said, "Okay, well...I'm okay, and I know I will be okay."

Later that night, I went into her room to say goodnight....and asked her if she had any questions about what had talked about earlier....She smiled at me and said, "This is just something to overcome and beat. " I sat there, looking at this young lady, so proud and filled with so much love.

"You'll be there with me every step of the way, Mom, so I know I will be okay!" We hugged and prayed and I rubbed her head....I told Bailey how happy she makes me, and how proud I am of her....and she says, "Well I'm proud of you too Mom!"

The appnt for the Neurologist got moved to Friday April 9th...and I will update with what we find out.

My children may have inherited NF from me....but they also got a fighting spirit to be able to overcome anything that life puts in front of them. I am truly blessed and honored to be a mother to them.

THRIVE ON!

~K