Monday, November 30, 2009

Everytime I 'Turn Around, Tuesday'

Ahhh, the sweet joys of parenting. There never ever seems to be a dull moment in our home. Whether it's the Swine Flu, Pink Eye, breaks, bruises, bloody noses, bonks on the head, or in our most recent ordeal, a sprained ankle, something is always happening here at home.
(You Facebookers know what I'm talking about, if you follow my status updates...LOL)
Bailey, decided she "needed" more attention, and went and fell down at church on Sunday. Well...It was more than a fall, it was more like a **Bonk**Slip**tumble**twist**Splat!
That seems the best way to get Mommy's FULL on Attention. :)
(If they only knew)
Poor Bailey couldn't get up to walk down the stairs, so I had her slumped over my shoulder, basically carrying her the whole way.

My initial reaction was that Bailey was REALLY over dramatizing this whole thing, and just needed some time to cool off and hang with me. But when that didn't work...I knew something was up.

Xrays would show no break in her bones, but upon examination, it was clear that she had pulled and possibly tore some tendons in her foot and ankle.

Luckily....*TADA* I pulled out the crutches from my own broken foot back in Feb 2008, and proudly handed them down to Bailey (awwwww like mother like daughter)

With a family THIS large, there is no time to rest. I am constantly on my guard for the next thing to happen. Don't get me wrong, I love my family to pieces and would much rather be busy doing this stuff, then doing nothing at all. But sometimes I wonder when all the craziness will stop. When will all this "bad stuff" end?

Stuff happens, life happens...and the truth is, the "bad stuff" will never end. But we can add a bunch of GOOD STUFF to the bad stuff, to make it more bearable, right?

I dedicate this set of clips, courtesy of America's Funniest Video's, to my daughter Bailey! I love you more than life itself. You know when to take a bad thing, and turn it into something good.

Motivational Monday

No More Hiding

I had a good friend of mine tell me that they had no idea our family had the NF diagnoses...she felt bad because she thought she was living in some bubble, or just not paying attention. Neither are true...She didn't know because I was doing my job in hiding it. I felt I was succeeding, because those around me, couldn't see it.

Even Drs. couldn't see it, or recognize it. I had gone through countless physicals, and 5 pregnancies before NF would ever be brought up. I had the bumps, but somehow, the NF got overlooked, and I was really happy about that. It was like I'd hold my breath and just wait, then let out a sigh of relief, when I'd make through yet another appointment.

I hated “hiding” my NF, but I felt that if I was fooling others, especially doctors, maybe I could fool myself. It turns out, that's the only person, I was really truly fooling.

But it caught up with me...In a huge way. One doctor would recognize Neurofibromatosis on my body, then shame me for bringing children into the world. I laid there exposed as the doctor ran the doppler over my 38 wk pregnant belly. “This looks like Neurofibromatosis” she said. When she saw the bumps. I closed my eyes, not wanting to hear that word, directed at me, but I had no where to run. No covers to hide under. The doctors next words would crush me. “Well, it's too late to do anything about this now...You're 38 wks pregnant.” I knew exactly where she was going with this. I just closed my eyes, and told her about my 5 happy and healthy children at home, and that I expected no different outcome from this pregnancy.

But as I left the doctors office that day, a crushing realization hit me so hard, I could barely drive home. Shaking and crying, I began realizing that I had hid for 33 yrs. In some way or another, part of me died during that ride home....but another part of me became alive.

I was scared to accept my reality, but this was the time to do it. No more running, no more hiding. I had brought real people into this world, who needed a voice. Two of my children already had the earmarkings for a diagnoses (cafe au laits and freckling under the arms and around the neck) but I didn't take them into be “officially” diagnosed by a geneticist.

After Brooklyn was born, I examined her immediately. I know that with my other children, NF wouldn't show itself until a few weeks after their birth, but each day, I would get my baby undressed and scan every inch of her.

She doesn't have NF, and I thank God everyday for that. But two, now possibly 3 of my children do. And I have to work hard, so that THEY never feel like they have to run and hide and feel ashamed. I teach them to love who they are, and not to be defined but what they have.

In truth, I was hiding NF from me more than anyone else. If nobody could see it, if it wasn't showing up on the outside, maybe it didn't really exist on the inside. Even after 'outing' myself, my friend is still my friend, and I've found many, many more friends since accepting, embracing, and choosing to Thrive with NF. I've also reconnected with my best friend, one who I spent years never trusting with the truth: Myself.

Thursday, November 26, 2009

Happy Thanksgiving

Gobble Gobble

Happy Thanksgiving!

50 MORE things for ME to be THANKFUL for

*Being able to walk into ANY church and worship
*Children's honest, sometimes too honest words
*NIH and Dr Stewart and Sarah Coombes
*Mini Vans
*Bear Hugs
*"This lil' Piggie'
*Squirt guns
*My Camera
*Pain medication
*Cable TV
*People who really know how to listen
*Throwing off my Inhibition
*Anticipation of Christmas
*boxes of chocolates
*Mended Friendships
*endless possibilities
*Old People
*Seeing the value in something
*Museums, that hold precious art
*Being able to laugh and cry at the same time
*flannel sheets
*home-made Choc chip cookies
*Fresh starts
*I am loved
*I am supported
*I got to meet MANY famous people
*Having Neurofibromatosis has opened doors for me
*I am getting done with my book
*Finding a Dream
*A good book
*The noise level of the house, even though it drives me crazy--one day I will miss it.
*My hubby who enables me some "quiet time" to think
*Being able to write freely
I'm sure I have 100 more things I am Thankful for, but for now I am just Thankful to be be me. To be a Wife, and a Mother. I am beyond blessed.

Have a Happy Thanksgiving

Tuesday, November 24, 2009

Don't Turn Around Tuesday!

Last night, hubby and I went to see 2012! It was a very much needed "surprise", last minute date. I knew going into this movie that we weren't going for some deeply emotional drama, so I was excited.
John Cusack rates number 5 on my all time favorite list....and as hokey, unrealistic, improbable, and poorly acted (outside of my sweetie, John) as it was, I really did enjoy the movie!

It also gave me the inspiration for today's "Don't Turnaround Tuesday"!

Throughout the film, Scif-Fi writer Jackson Curtis (Cusack) and his family were running, driving, flying, and swimming towards safety. We watched the earth crumble just millimeters behind each step they took, runways collapsing underneath their planes (yes, there were two treacherous plane trips in this 2 hour and 45 minute roller coaster ride), and fireballs just miss crushing our favorite characters as they perilously but persistently made their journey to the safety of the 'arks' waiting in China.

Disaster movies teach us one universal truth about life: When the world is exploding around you, the last thing you want to do is turn around! Glancing back into the destruction, lamenting what you've lost, fearing what may destroy you is a sure-fire strategy to die early.

It's easy to sit and watch our lives fall down in flames around us. To focus on the hopelessness of it all. To even find honor in facing the failure and allowing ourselves to succumb to it, in an emotionally martyristic-like fashion.

The more difficult road is to fight, to keep our eyes on living, even in the face of certain defeat, certain death. To spend every last ounce of our physical and mental energy moving forward, to save ourselves, and those closest to us.

Yeah, Neurofibromatosis sucks. But this Turnaround Tuesday, I'm not going to turnaround. I'm going to keep my eyes firmly fixed to my salvation ahead. How 'bout you?

Sunday, November 22, 2009

Motivational Monday

Ruffling Feathers

I have always cared about what people thought about about me. So much so, that I have actually changed the course of my life, several times. Unbelievable? Yeah. I was so afraid to offend, so afraid to hurt feelings that I would never speak my mind about anything I believed in.

I used to fear conflict and criticism so much, that I would run the other direction, when confronted with a choice. I don't love conflict now, but somehow since my new found 'Thriving with Neurofibromatosis', I am less afraid of it. I have found a new sense of bravery, that makes less afraid to ruffle some feathers.

Unpopular choices sometimes have to be made. Whether they hurt feelings or not. I worry less now about being judged for them. It's much easier when you have something to believe in, especially when you are fighting for your life, or your children's lives.

In order for me to do right by my family, flying under the radar wasn't going to happen anymore. I had done that my entire life and it had gotten me no where. Criticism is a part of life, and me being out here on the internet "THRIVING", I risk criticism of others, and actually that would be true if I was on-line or not.

What do you believe in? Are you letting what others think of you control the way you live your life? It has taken me a long time to find my voice, but as I found it...I became a stronger advocate for my kids and a more compassionate person, who is accepting of others and the choices THEY make.

Neurofibromatosis, has made me stronger, not weaker. It has firmed up my back bone so much so, that it will never- ever be walked on again! With each passing month I grow stronger, and less afraid of the ruffled feathers.

Wednesday, November 18, 2009

Thankful Thursday

When I was first diagnosed with Neurofibromatosis, I found it hard to be thankful for anything. I was mad, and angry. Falling into a depression, just as my mother had, years before. For a long time, I had denied the fact I had NF. I was ashamed and embarrassed, because I knew accepting it meant not only the fact that I had I life long disorder, but also, that I may be more like my brother than I thought.

I struggle everyday trying to live a gracious and positive life, but I sure feel better about things when I do. I have seen the flip side of how things turn out, when one is angry and resentful. My mother was left feeling lost and feeling hopeless. She had no one to help guide her out of the darkness. I see how this has affected her life, and it helps to push me into feeling more hope filled and positive.

If you are struggling with Neurofibromatosis, or any other disorder, it's sometimes hard to find things to be thankful. But being thankful opens us up to receiving all kinds of wonderful blessings. When in a state of gratefullness, we acknowledge our true selves and radiate this energy to others.

Being thankful isn't just being nice and sweet and saying please and thank you. It's so much more than that. When you are thankful, you are experiencing the feeling of true gratefulness. Appreciating the things in your life that touch your core means you acknowledge your true blessings.

I remember a few years ago Oprah had something on her show that she called a "Thankfulness Journal". This is just a place to write down events and blessings that come your way. I'm sure her journal is much thicker than mine, but that's okay! :) She doesn't have the six kids that wake her up every morning and the 4 yr who "wipes in" all mommy's kisses.

Keeping a journal, when you are dealing with illness is especially important because the ups and downs can come and go so swiftly. It's important to see both the good and the bad side of things, as to be able to appropriately appreciate the blessings that come your way.

This Thursday and next will be a list of 50 things I am THANKFUL for! I hope and pray your Holidays are filled with hope and gratefulness. I hope you have people in your life, to guide you out of the darkness. If not, take my hand, I'm here for you.

50 Things I am Thankful for
Being a Mommy
The Sunrise
Blowing Bubbles
Painting My Children's Toe Nails
Being a Friend
Being Able to Dream
Living in this House
Having True Friends
Being able to Start to Write a Book
Being a Nice Person
Being able to see a Doctor when I need to
The Seasons
Rain on my Face
Warm Feet
Seeing Wild Deer in our Back Yard
FaceBook (I love you guys)
Kids who go to school! (giving mommy a break)
The Stars (They are Amazing up here in Deer Park)
Hard times
The first Snow
When people think of others before themselves
The smell of Campfires
Being ME
Playing in the Rain
Doing Nothing
Family Time
Pancake Saturdays
Being Pregnant
Giving Birth
Diet Pepsi
Comfy Pants
Going for a Walk
Roller Coasters
Reese's PeanutButter Cups
Pizza Delivery
Better yet--Chinese Delivery!!
Following Footprints
paying off a bill
Full Moons
Laying under a Shade tree in the Summer
Raking Leaves
Jumping in the Leaves
Long Drives
Taking Pictures

Go forth and be THANKFUL!

Monday, November 16, 2009

Are you driven to hide or driven to THRIVE?

Motivational Monday
I was 8 years old and terrified. It was time for me to go to the dentist and I didn't want to go. I hid under my bed and stayed quiet. I just knew the dentist was going to do something horrible to me.

If I remained silent, my mother wouldn't find me, and the appointment would go away, right? No such luck. My mother found my hiding spot, grabbed my ankles and pulled me from my protective confines. Grasping at toys, clothes and dust bunnies, there was nothing to protect me from what was to come.

I feel this way even today. The fear of what's happening to me medically often triggers my inner desire to hide under the bed in silence. But even if I hide in fear, I'm left under that bed, in the dark...all alone. And THAT can be the scariest time of all.

Fear can lock you into a state of insecurity, but it will NOT leave you powerless. You remain in control over how you choose to handle it. You can let your fear steer you under the bed, or you can steer your fear through your obstacles. No one ever became great by letting fear steer their life.

Yes, fear causes anxiety, stress and anger - and that doesn't feel good. I have watched people in my life waste way by hanging on to these feelings. I know that if they would let some of this anger go, they would live a much happier life.

My appointment with the dentist when I was 8 yrs old was not that fact, by filling the cavity, I avoided a tremendous amount of pain later. That day, It took my mom to help me beat my fear, even as I went kicking and screaming. Now, I'm stronger, and I have people to help remind me of the consequences of fearful paralysis.

Even as I experience extreme fear, I am experienced enough to know that hiding from what I fear, letting fear steer my path in life, will drive me straight into pain. The pain of not enjoying my children or not living long enough to meet my grandchildren. The pain of a life unlived, under cover of isolation and darkness.

Sure, I occasionally have to be dragged out kicking and screaming. But over the years, I have become more willing to instead reach out my hand to those around me who want to lift me up and out of my fear. I look through my fright for the sight of solutions. I will not allow my fear to drive me no matter how hard it pulls at the wheel.

Fear is no small topic - and I have thousands of words left to write. And I'll get around to it. But, if you'll excuse me for awhile, I've got a dentist appointment to get to!

Thursday, November 12, 2009

NF has NOTHING on Rachel

Thriving Thursday

I know I said I was taking a break from blogging, but I wanted to share with you a story about Rachel.

Rachel is my 6 yr old daughter who has NF1. Neurofibromatosis has affected our family in many ways. We seem to always have appointments with doctors, or MRI's to go to. It has definitely been a roller coaster ride.

NF1 has affected Rachel's growth in a BIG way....or small way. She has always been tiny. Born at 6 pounds 6 ounces, she has stayed in the 5th percentile her entire life.

Diagnosed with NF1 at 3 months old, Rachel has never let anything stand in her way. She came out of me, quietly, never crying....just taking everything in.

I remember looking over at her, right after she was born. The nurses were trying to get her to cry, but she didn't. Relaxed and breathing fine, she just looked right back, as if to say, "whew, mommy, we did it!"

Today, still in the 5th percentile--weighing barely 35 pounds, she is feisty and doesn't let her size slow her down. While the other kids tower over her, she knows how to stand up to them. It's amazing to watch!

Rachel's school had a Veteran's Day concert....the kids all sang great tribute songs, and little Rachel's voice carried over everyone else's :)

There was a boy standing next to her who was being less than cooperative...So Rachel gave him a shove to get him back in line. The boy just looked down at Rachel and up at him, then put her hands on her hips as if she was scolding him. It was quite a site....and the boy quickly turned around and did what he was supposed to do! That's my girl!

She may be small, and she may have NF....But this girl doesn't let that stop her! I pray she keeps this feisty will help overcome all her obstacles!

So my Thriving Thursday, is my little "Daisy Girl"....She fills my heart with such joy, and she teaches me to never let anything stand in my way, or slow me down.

I love you Rachel Daisy!

Wednesday, November 11, 2009

Happy Veteran's Day!

To all who have served and to all who are actively serving..
God Bless You!

I especially want to thank my own brothers!
I love you Jay and Kyle!

Tuesday, November 10, 2009

Turn-it-Around Tuesday

(Today I have asked my husband to donate a post for Turnaround Tuesday. You can find his blogs at and He doesn't normally blog for free. Let's just say I've negotiated payment.)

“I don't love you. I only love Mom.” Typical words from a 3 and 4 year old boy, I suppose. Tough to hear, though. “Don't kiss me! Wipe off, wipe off!” - more words wielded by my youngest son, who wipes IN all of mommy's kisses. Even one morning, when things seem good, and little Riker is dozing off between Kristi and I, and I kiss him, whispering “I love you” - he whispers back “wipe off” - comical if it wasn't so hurtful.

It seemed like Riker just woke up one day hating me. I didn't understand why. He would act as if I didn't exist. For 10 straight months he treated me like a stranger. When Kristi talked to him, he would say “I only love you” and “Daddy yells at me”. Did I yell at him? Yep – him and the 5 other kids, too. Frankly, yelling is pretty common in this house, with our stress level, even by his mom. We don't like it, but I was hardly alone in my penchant for hollering.

Still, I worked extra hard not to yell at him. I took just him out to the store. I played video games with him. He'd have fun in the moment, but always revert to “I don't love you.”

One of the reasons it hurt so much was that I had no relationship of any quality with my own father, and was determined to have a strong relationship with him. I love our older son, Braden as well, but that relationship is very different, as he is torn between me and his biological father. Braden's other issues also get in the way of a deep, emotional bond. We're working on it, though.

I don't know if Riker knew how much he was hurting me, or if he just couldn't wrap his head around loving both parents. Maybe both. But it was killing me – as bad as so many other things going on in our family have been, this was a crusher for me – Riker thought I was a bad dad.

About six weeks ago, we started to see some chinks in the dam. Riker loved to play chess, and I'm the chess player of the family. So I made a vow that whenever he asked, I'd drop everything and play. First thing in the morning, in the middle of work (I work at home, but still, a distraction), even late into the evening. We played game after game – at four years old he can play a full game from start to finish. He can't win, but he can play. I quickly learned that he's not like Riley, who doesn't care if she loses. Riker has to WIN! But you can't always let him win, because sometimes he wants YOU to win. I finally started asking him before we played who should win the game – him or me.

At family meetings, he started saying the best part of his day was playing chess with me. He started hugging me, voluntarily, before bedtime. When I kiss his forehead, he actually says “wipe in”. Tonight, just as I started this blog post, the final wall went down. I asked him to get me a pop. He brought over, saying “You drink 7 million 6587435 of these every day!” I told him that's exactly how many times I love him. He smiled and turned to go, and then turned back: “I love you 100 infinity, and that's MORE”.

If that's not a turnaround Tuesday, I don't know what is. How do you explain this turnaround? Is he just growing up? Did I suddenly become a better Dad? Do I yell less? Yes, on all counts. If you're looking to make a turnaround, its important to understand the problem. It's vital to change behaviors. But it often must be done over a period of time. If your turnarounds aren't happening fast enough for you, remember to keep the faith. Make adjustments. Keep moving forward. In the end, turnarounds are always worth the wait.

----Thanks for the post! We all have things to work on, but I think personal relationships are the most important. A seed cannot grow, without soil, water and sunlight. Riker is growing to understand that things happen that are out of his control. I'm happy this "turn-around" happened :)

"Any man can be a Father but it takes someone special to be a dad." -- Anne Geddes

Monday, November 9, 2009

Motivational Monday

What Motivates Me?

I've been emailed a few times about my blog, and about the way I have chosen to look at my life with Neurofibromatosis. Most of the comments I receive are very positive and I appreciate that so much. But there are few who question my positive choice. I'm not sure if they don't believe I actually live like this, or if they have so much negativity in their own life, that they just feel the need to spread it around.

I know all about Neurofibromatosis. I know about the brain tumors, loss of vision, loss hearing, chronic pain, scoliosis, body tumors, headaches, dizziness, learning disorders.

Even with all of that....I dream. I care about all the little things in life, that make life worth living. I believe in miracles. I believe in laughing when you are sad, and crying when you are happy.

Everyone has the power of choice, so why not use it for something that will propel you forward? If your life is spent focusing on the negativity, that's exactly what your life will bring you. NF sucks, there is no doubt about it. Give the power of your mind a chance to fight this disorder. Changing your perception of something doesn't change the something, but it does change the events around the something....It can make dealing with NF a little easier--who wouldn't want that?

The challenges we face in this life, build our character. The challenges reveal our strengths....or our weaknesses. Shakespeare wrote, "There is nothing good nor bad but thinking makes it so." Changing the way you choose to focus on your challenges can make the difference in if you are Thriving...or just Surviving.

Thursday, November 5, 2009


Open WIDE!

Today I took Bailey into the hospital to have tonsil/adnoid surgery. The doctors also put in ear tubes in.

Poor Bailey has had to deal with so much pain over that last few years. We FINALLY found a DR. who listened! (Imagine That!)

The surgery was sooo fast, and Bailey did amazing! She is dealing with quite the sore throat though.

We stocked up on yogurt, ice cream, apple sauce and bananas. And I'm thinking she is enjoying the attention. :)

We saw her tonsils, after the surgery and they were some of the worst the doctor has seen. VERY infected and BIG! :( I felt bad that we hadn't pushed harder, earlier.

Anyways ... She is home and resting....and she has 5 brothers and sisters, to wait on her hand and foot.

My Thriving Thursday is for my little brave! She was so afraid of the surgery, the IV....but she pushed through it. She did not let her fear take her!!

I love you, Bailey Boo! You are my brave young woman!

(((((BUG HUGS))))

Wednesday, November 4, 2009

A Whatever Wednesday

My oldest daughter is going in for surgery tomorrow. She is getting ear tubes, and tonils/adnoids removed. *fun fun*
I will be taking a little break from blogging....With all the medical stuff and the holidays coming, I am feeling a bit overwhelmed.
I want to be able to provide quality stuff for you guys, and I feel like I am slipping a little.

Don't worry....I will be back and better than ever!


I always get a kick with the Guinness Book of World Records....It's amazing what people will do, to get their name in the book!
Here are a few of my favorites:

Have a GREAT Wednesday.

Tuesday, November 3, 2009


Turn-it-Around Tuesday!

Sometimes, the things you fear the most, can lead you to the greatest successes.

I get fearful all the time. With a disorder like Neurofibromatosis, your future (health wise) is so variable. I see pictures of people in their 50's-60's with NF and wonder if my fate is sealed. Will I still be able to "Thrive", when my body is consumed with tumors? One thing I have learned about fear; if you don't push through it, you will never overcome it.

Yesterday, I met with my Neurologist, to talk about the MRI and visual field test, that I had last week. Getting ready for the visit, I felt a fear inside me, that made me want to cancel the appointment. I was scared that I was going to get some life changing results.

I went, pushed the fear away, and sat as I listened to Dr. Rojas tell me that my MRI actually looked BETTER than the one I had in May '09. The enlarged ventricles were smaller, the brain tumor had not changed in size and there were no tumors on or around the Optic pathways. GOOD NEWS! My fears settled and I breathed a sigh of relief.

I really needed some good news. Life has been taking us on quite an obstacle course with all of the medical stuff going on. I had been feeling very overwhelmed with having so many doctors appointments, and exhausted and frustrated from not getting any answers....THIS was a good day!

I asked about my visual field test, but the Dr. had not received the results. Dr. Rojas promised she would call me, if the results of that, showed anything to be concerned about. I know there is SOMETHING going on with my vision....but it's not clear on what. (no pun intended)

I felt good when I left the doctors office. I was given an increased prescription for Topomax and was told to keep taking Lazic and Potassium.

We are giving this another 12 wks, before considering a shunt.

So my Turn Around is simply this -- Don't be afraid of your fears. That may sound cliche', but if you let your fears control you, you lose out on some pretty awesome things. The fears you have, show you that you are alive. Try to turn those fears into the energy that pushes you forward.

Sunday, November 1, 2009

Accepting Reality

Motivational Monday
(Accepting Reality)

So much of my life has been wasted, trying to hide from my NF. I never wanted to accept the reality of it. I saw the pain it caused my mother, and I just wanted to close that door and forget it existed.
I would hear my mother praying to God, and get confused when she used words of anger and hatred. She blamed God for bringing this "curse" into our family. I vowed to never let myself get there.
I do hate having NF, and I hate the fact that I have passed this on to my children. But this is when I make a choice, to not get angry about it. I accept my reality and my future with Neurofibromatosis.

It's hard to accept reality. Sometimes it means facing your biggest fears. But when you learn to stand up and accept it, you learn to gain control over it. Once you gain control over your reality, you can change the world.

My reality is, that I have Neurofibromatosis. But that's not the end of me, that's just the beginning.