Monday, August 31, 2009

Turn it around Tuesday

Many cultures throughout the world, share a common, coming of age ritual, known simply as a Vision Quest.......While we often think of this in terms of altering the perception of what we see around us, in truth it has nothing to do with the physical act of seeing at all.

This rite of passage, marks the transition, from child—to adult. A turning point, meant to find ones self and their intended purpose in life. Who am I? Why am I here? A time of internal transformation and renewal.

As I sat and watched my daughter struggle to read the letters reflected on the wall...I closed my eyes, only to encounter my own 'Vision Quest'. The road that lay before us was that of a mystery. “Her vision has gotten worse in the 3 months since our last visit Ms. Hopkins”.....The Ophthalmologist looked up at me over her glasses, that were slid down to the tip of her nose. The doctor spent another half an hour with Rachel, adjusting the settings and fiddling with that and that, only to come to the same conclusion.

The nurse jotted down some notes, while the doctor wheeled her chair over to me and put her hand on my knee. “Just give it to me straight”, I told her. I kept my eyes closed, and took in a deep breath.....perhaps anticipating, the darkness that my daughter could be facing.

I was told that the vision loss was worrisome, in that if it continues at this rate, by the time Rachel is 10, she could be “legally blind”. I opened my eyes, and looked over at my daughter....she was playing with her shoes and giggling, when they kept falling off. I gave her our special wink- wink-kiss and told her I loved her.

We got a prescription for some eye drops, that will keep Rachel's eyes in a dilated state, to relax her eye muscles, so that perhaps, her glasses that she is wearing now, will help her see better. We were told to schedule our appointment with our Neurologist as soon as possible.

Rachel's last MRI was in MAY and we are on a every 6 month basis, but may have to bump it up a bit, just in case her tumor is growing.

I take Rachel's hand and make sure to get her a sticker, as we make a return appointment for 3 wks from today. As we walk out of the Drs office, I kneel down to Rachel....and I look into her sweet hazel/blue eyes....I tell her how much I love her. She smiles and tells me that this was the best day ever!

I came of age many years ago....but today was a Vision Quest nonetheless. I now have a deep understanding, of why God put me here. I know exactly what my purpose is.

Who am I? Why am I here? Those questions were answered at that very moment. If my daughter loses her physical vision, it is my job, to help her, so she never loses her spiritual vision. Poor site or no site....this will never alter her direction in life. (with 5 other kids, one can only imagine the 'Vision Quests' to come (: )

Sunday, August 30, 2009

Motivational Monday

Ode to Summer

Laying on our back
and watching the trees

running thru the grass
and feeling the breeze

Feet in the creek,
water on our toes

Sand in my shoes
and the sun on my nose

the days went on
like fireworks in the sky

Blasting so quickly
and passing us by

now its time
to settle back down

catching the bus
as the school bell sounds

I will miss my summer days
but carry the memories
in so many ways-
School starts tomorrow...
What to do....What to do?!

I remember the first day of school, when I was a kid. The new clothes, backpack, shoes....everything felt fresh! I was so excited to begin a new was a new opportunity to invent myself, all over again.

I could be anyone I wanted.

A new school year for me, usually meant a new school. I remember the year I decided I would be the really friendly, really out-going girl, who joined all the clubs. This was totally against my quiet/shy nature, but ended up being my most favorite year.

I was busy, had a boyfriend and made many great memories. Sometimes stepping out of your comfort zone, can reap you tons of rewards! :)

As my kids go off on the first day of a new year.....I wonder who they will choose to be. A new year --- a new opportunity to do be anything!

Every choice we make is a new opportunity to start new. We don't have to wait for the first day of school, or the first day of a new job, or a Monday to start a diet......every second, every minute is your chance to reinvent yourself!!

Pictures will be on FaceBook :)
Happy Monday


Friday, August 28, 2009

Freaky Friday

It's been on the calendar for months and basically forgotten. When the day finally came, I wasn't nervous. I didn't expect to hear anything I didn't already know. The Neurologist would say, "Neurofibromatosis"...I know, I know...”bright spots in the brain” Blah blah blah. But that's not what the she said. The 4mm mass is in a spot where the neuropathways connect the vision. If it grows, “we're in trouble” she told me.

TROUBLE? It seems if the tumor grows, it could greatly impact my vision. Not having anyone there with me at this doctors appointment, is now something I regret. I wanted to hold someones hand. I wanted someone to put the arm around me. The walls of the small room, closed in on me.

“You also have extra fluid and very swollen ventricles”. **Note this MRI was taken in MAY....It's now AUGUST!

I explained my painful headaches, and other strange quite weird one.....very recently, while working on the computer, or writing, my index finger will suddenly feel “wet”. I pull my hand close, and wipe it with my thumb....but the finger isn't wet. The Dr. explained this is symptoms of seizure.

After doing a full neurological exam, she told me about the tests that I would need to have. She wants to test the fluid flow in my see if there is a blockage. I will also, have a spinal tap. A full visual field will be done on a every 6 month basis.

Before the appointment, I printed out some NF fact sheets. I showed the sheets to the DR. and she loved them. I told her about my websites, t-shirts and blog. She was very impressed.

I kept thinking, that there was no better time, to show how I am Thriving with NF!

On the drive home, I felt a peace over me. Although I do worry about what is to come...I am not worried about getting through it.

Neurofibromatosis, won't scare me. I won't let it win. I will fight this with everything I have.

Thank you Lord...for my family
for my children--
who give me the will
to keep pushing foward.
Watch over me--and them

Tuesday, August 25, 2009

Thriving Thursday

'Thriving Thursday' brings you my friend Jenni. I met Jenni through an NF Group on Facebook. She's an awesome person, who doesn't let the diagnosis of Neurofibromatosis slow her down.
Her quirky personality and tender heart makes her one of my favorite people! Here is HER story on how she is THRIVING WITH NEUROFIBROMATOSIS!!

"I don't need tattoos. I have spots. I love my spots. It's so different and weird. As much as NF worries me about my health, I'm not sure I'd trade it in to be “normal”. It's depressing sometimes and makes me feel like a freak when I get socially awkward, which is all the time. I'm not sure how NF will affect my future. I just know it's going to kill me someday.

I was diagnosed with NF1 when I was about two. Before Kindergarten, I was in Special Ed for a year (I think) before going into mainstream school with extra help, speech therapy classes (which I was stubborn in). I had many, many MRIs in my life, probably a few a year, which has now waned down to one every other year or so. I'm lucky to be this healthy. I'm lucky to have the problems I have with coping. My problems are more psychological and how I look, how I talk, and how social I am. And yet still I struggle. I still feel like a freak.

It's something I never talk about to normal people. A co-worker asked me about it after seeing it on my Facebook page, and I brushed it off, somewhat embarrassed, like a kid with its hand caught in a cookie jar. I don't talk about it to people I don't trust, which is nearly everyone. No one knows about it anyway. To them, I'm just a bit “off.” I'm okay with that. I tell people altered versions of the truth. “I just have bad hands.” I say, instead of “My NF affects my fine motor skills and become clumsy, so it's very hard for me to write, pipe, and crimp neatly.” (I have a Baking and Pastry Degree, so decorating skills are important, and I lack them severely) It's too much to explain and understand. It's best that they don't know. I'm used to the teasing and comments. But Facebook, believe it or not, has made me open up more about my NF than anything else. I've found so many friends, who make me feel so accepted and normal with how I feel and what I go through. It's so comforting to know there are people out there with things you can relate to with MRIs, nerve pain, itchiness and tumors. There's always someone to talk to.

I'm not sure how I feel about NF. I think about it every day. Wondering when it will get me. If my thoughts about only living to 25 will be true. If I do make it past that age, what will my life be? It's going to get me someday. Good health doesn't last forever. You'd think that thoughts like this would challenge me to do all sorts of things: skydive, travel to a distant country and eat bugs, swim in Hawaii, climb mountains, eat cheese in France. But I don't. Not yet. Doing so would seal the deal of my death date. So I'm here. Working twice as hard as everyone else just to prove that I'm normal. A “high functioning freak”. My prognosis when I was two years old was I wouldn't make it past the mental/functioning age of 6. So for me, to have a job, college degrees, a car paid for with my own money, and a guy I'm practically engaged to is sort of a big deal for me. Small wins. Stuff you Normals take for normal is a small win for me.
But I try to make something out of my life. I see the positive stuff that is in NF. How hard I try at my job. Being compassionate and friendly to people who are different. Possessing deep empathy. Trying hard to be my own person and make the best out of my situations. And of course, I love my spots. I have the affection for them like one with a tattoo would. The blotches of cafe au lait on my skin. They stick out, like some sort of Freak Alarm. If I didn't have my spots, if one day they were to be gone, and I'd have normal skin, I would feel at a loss. NF is a part of who I am, and while it may kill me someday, I have no idea
what I would do without it."

Thanks so much Jenni, for helping to show others that you can have a disorder.....But THAT disorder does NOT have you! BIG HUGS are my THRIVING HERO!

***Check out more from Jenni***

Whatever Whacky Wednesday!

Nothing like a picture update!
Here are some recent pictures of my kids!
Three of the kids have NF (but if you didn't might never know)
ALL were born with Attitude, Spirit and a Thriving Attitude

In some people NF shouts loudly--drawing attention to itself....... In others, it whispers quietly--only audible, if you are willing to listen---
Thriving with of course, about helping the whole world listen!








Monday, August 24, 2009

Turn it around Tuesday


Have you ever been judged solely on your looks? Has someone ever told you, that you just weren't their type?

I watched 'Dating in the Dark' for the first time Monday night and to be honest, I wasn't shocked about how superficial the people were.

The show is based on putting couples in a dating environment totally in the dark. They go on a few "dates" and pick who THEY think they are most compatible with. The guys and the girls are then paired up, based on a computer generated compatibility test.

The "compatible" couples then are exposed to each other one at a time. Some were disappointed, some were happy. One of each of the couples is then left to wait and see if the "compatible" partner steps out of the house, indicating, they want to date them in the real life.

Finding that one true love, would never happen for me, like this. I am me. From start to finish.. In the dark....In the light. Bumps, lumps...take me or leave me.

This show....just diminishes all hope that people can see past the "flaws" people have. Granted, I have only seen one show....but that was enough for me. As if dating wasn't hard enough. Now we get to see what the other side REALLY thinks of us! (I guess that's why I didn't get a lot of call backs for 2nd dates)

I know that I'm far from a perfect "10".....but there are a few in my life, who would disagree. And those are the people I keep close to my heart.

Seeing people from the inside out, is not a skill that is easily mastered....but you finally get it....Oh the treasures you will find! :)

Sunday, August 23, 2009

Motivational Monday

I used to seek solitude in a long, hot bubble bath. After an exhausting day of chasing kids, there was nothing better than slipping away from the after-dinner craziness, into the solace of my bathroom. With a lavendar-scented candle, warm, soft bubbles, and the quiet lapping of water as the tub filled. Sometimes I even read books that spanned beyond “Dr. Suess” and “Judy Blume,” but usually, I rested my head on a wash clothe and let the day slip away. The lights were off, and the candle flickered away, creating dancing shadows on the walls.

One evening, I forgot to lock the door. (big mistake) Bailey, my oldest, slipped quietly in the door and kneeled by the tub. “Want me to wash your back, Mommy?” she asked in a whisper, perhaps sensing my need for quiet. I looked at her, and couldn’t resist the genuine plea to participate in my bath time ritual. She took the bar of soap between her fumbling hands until lather billowed from her fingers, and then gently rubbed it across my back. I hummed an “mmmmm” of appreciation, and she asked “Do you like for me to wash your back, Mommy?” I did very much.

A few moments later, Riley, my middle child, discovered she was being left out of something that looked wonderfully fun -- water and bubbles. She too knelt by the tub, keeping her normally spirited voice to a soft lull. “I want to play too!” she said. Scooping up a handful of bubbles, she dabbed some on her nose and giggled. Though I should have felt my moment of solitude had been invaded, I giggled too. It became a game. She blotted my cheeks with bubbles. “I love your cheeks,” she smiled. And then my chin. “I love your chin.” And my knees, and my elbows, and my ooshey gooshey tummy. She loved every decorated part of me. No one in THIS room cared about my lumps and bumps. I was their mommy....their hero....their playmate in the moment!

My other daughters soon followed, delighting in the white wonderland of bubbles and soap. Even the boys peeked in, to see what was causing all the comotion. Some of the sweetness of the moment gave way to rambunctious play as water splashed, and bubbles popped, and giggles floated.

Hearing the chaos of laughter, my husband knew they must be up to no good. But instead, he found them lined like a row of ducklings by their mommy, soaking the floor and themselves, donning beards and hats of bubbles. And, to his surprise, he found a smile on my face. So, as any good father should, he smiled back at me, came over to the tub, scooped up a handful of bubbles and blew me the sweetest bubble kiss ever.

These days, my bath time ritual has changed. Though sometimes I miss soaking in the peace, and widening my horizons with books without pictures, there will be plenty of time for that. There will come a time when the simplicity of water, bubbles, and mommy will no longer delight my children to such giddiness. There will come a time when my babies are too embarrassed to tell me they love my nose, and they love my ears. And there will come a time when they will all be too busy to volunteer a back rub or to gently wrap me in my towel so that I don’t get “freezing,” as Bailey would say.

I listen to my kids say their prayers before bed, and cannot help but smile when they thank God for mommy letting them give her a bath, and tell God they hope I take a bath tomorrow night.

And when I finally go to bed, I say my own prayers, I too, thank God for bath time....

Happy Monday !

Thursday, August 20, 2009

Freaky Friday

One of my favorite Disney movies!. A young teenager is granted her wish, to switch places with her mother. Their experiences turn out to be quite difficult. Turns out, the grass isn't always greener on the other side.

If I was to be granted this wish....I would probably want to switch places with a well known doctor. So that they could truly experience, what it's like in a NF body. Perhaps learn something.

And me? I could experience life without NF. The pain would be gone. The stares would go away. And I would be "normal".

But I wouldn't want to stay there long. I'd want to come back to everything I have right now....because, it's ALL good...and it's mine :)

The tumors and headaches, yea sure, I'd love for them to go away....But they are what makes And I'm happy with that.

Who would YOU switch places with? Tell me why.

Have a HAPPY FRIDAY and be Safe!


Thriving Thursday

"Mommy, why are there bees?" Having a conversation with a 4 yr old can be a fascinating thing. "They are mean and they sting me."

"We have bees, because they pollinate the flowers. They give us honey. And they feed the spiders."

"WOW! Well, then why are there spiders? They are creepy and crawly and scary."

I can see where this is going, and the story of 'There was an old lady who swallowed a fly', came to my mind. I smiled and took the lead on this one.

"We have spiders to feed the birds, sweetheart." My sons eyes filled with amazement, "Wow, mom you're the smartest girl I know!" I then asked HIM, why he thinks we have birds.

His response melted my heart. "'Cuz, they are so pretty, and there are so many kinds, they fly and make the world so great. Just like people do." "Well why do people make the world so great, honey?" I ask. "Cuz God made em." he says.

So simple, a child's mind, yet so profound. What is it about the way a child sees things, that makes everything so wonderful? Why do they always see the good and amazing? My son didn't KNOW the bees were "bad", until he got stung. He didn't know spiders were "scary", until he saw his mommyshriek, as one crawled across the floor.

Just like in the story of Adam and Eve. It was only AFTER they sinned, that they became shameful, hiding from God. It was THEN that right and wrong...good and evil became something to worry about.

As we grow up, our mind is molded by what other people say or think. I knew nothing about NF, until I heard my mother curse it. I was taught to fear it, hate it, dread it. I was taught, that I should cover myself up and feel ashamed.

It was only after my official diagnoses, that I had to reach deep down, and pulled out a strength that exists in everyone. I saw how angry and tormented my mother was, and vowed to never ever let myself become like her.

Switching the thoughts in my mind wasn't easy...In fact I have to work at it every single day. But just as my son now looks at bees and spiders in a different way, I look my Nf in a different way too. Instead of something scary, or creepy, I see beyond and focus on the beauty of the creation itself.

I too, have a purpose in life. And so do you. Don't be ashamed of who you are....or afraid of what could happen. Choose to reach down into that place, where the child lives, and pull it out. And see the amazing creation that you are.

Wednesday, August 19, 2009

A Whatever Wednesday

When I woke Up.....I knew exactly what I wanted to write about. When I got to the computer to mind shifted to many other topics. I have Wednesday bookmarked for "whining, wacky or 'what about me'." But I couldn't decide what to put today under.....maybe all of them?
I got to thinking about beauty, how so many people try to attain this idea of perfection. I wonder who set that bar so high? These celebrities...with their fancy cars, "perfect" bodies, and flawless faces. Thousands...heck millions of dollars spent, rearranging body parts to look....better? Yikes!

My favortite actress....So beautiful in the late 80's...early 90's. What happened Meg?


The before and after kinda look the same here

I'm sorry Michael...RIP....but dude what were you thinking? :(

Do I really need to say anything here?

How important is it, always trying to live up to someone elses standard of perfection? I would think that would be quite exhausting. My feeling is that these multi-million dollar people, are truly lost. Desperately trying to attain a level of perfection, that sadly...they will never get to.

So, a nip and a tuck, a stretch and a pull, lazer, injections, addtions, subtractions....all for what? The definition of "beauty" to me, changes constantly, and oddly enough, isn't defined by what you look like.

The NF may change appearances, deforming and twisting the body...but the soul, the heart, the mind are true characters of beauty, and those never change.

YOU are beautiful just as you are, God made no mistake, when creating you. Physical beauty, does not define inner beauty.


Although outward beauty may be seen
all painted on with a brush so fair
its shallowness can be revealed
in our actions unaware,

But inner beauty is much more rare
and it comes from God above
It is shown in how we act
and how we show His

Like an oyster in the ocean
its outer shell so plain and dull
but when you look inside of it
theres a pearl so beautiful.

I hope to be like the oyster
when you look inside you'll see
a heart so warm and beautiful
and see God's love inside of me.

Monday, August 17, 2009

Turn it around Tuesday

"When he got into the water, it was like....You know that experiment with water, pepper and soap? People scattered and moved away from him."

My dad called me yesterday. We talked about my blog, and the CafePress stuff I have been doing. He told me how proud he is of me and how impressed he was, that I was doing something like this. This conversation meant the world to me. I have ALWAYS cared what my dad thinks of me...and to have him tell me this, felt so good.

We hung up, then a few minutes later, he called back. He told me of a recent trip to Lava Hot Springs. While at a public pool on his vacation, he noticed a man, who very obviously had Neurofibromatosis. My dad watched, but did not stare at this man, for he knew, he had an immediate connection with him; even though they had never met.

As this man took off his shirt, to enter the pool... my dad's focus switched, to the crowd around him. People staring. Pointing. Laughing.

"When he got into the water, it was like....You know that experiment with water, pepper and soap? People scattered and moved away from him."

My dad got up and went over to introduce himself. It wasn't because he felt sorry for the man....but because of the NF connection. The man didn't seem bothered by what was happening around fact he almost seem oblivious. My dad had a nice conversation with the man and told him about his kids, and how NF has affected our family.

As my dad was telling me this story, I was picturing in my mind how this looked. I hope some of the people there learned something that day. Probably not...but I can hope.

This man. Is a MAN. Who has NF. I wish I was there that day. My new found THRIVING, would have probably talked to some of those people at the pool.

Neurofibromatosis, is NOT contagious! Heck....You can't even "catch it", if I donated my blood to you! Even if I donated one of my kidneys (although mine are in bad shape - so I'll keep them) you wouldn't get NF. NF is found in your GENES...CHROMOSOMES.

I am so proud of my dad.....for not just laying back, to watch this man be stoned by people around him. The acknowledgement of another human being....amazing.

My dad did tell this man about my blog.....and I have no idea if he would choose to come here to read it. But if so.....Welcome to this little corner of the world. Here, you are safe. We see the man beyond the tumors. We respect you. We will never laugh and point at you. AND...we are trying to educate people, so nobody else ever does that to you again.


And Dad...I love you.

PS...I just love how when I do a spell check on my writings...NEUROFIBROMATOSIS, is telling me it's about needing to spread the word and educate people..sheesh!

Sunday, August 16, 2009


We have created an awesome logo for THRIVING with NF...and now have T-shirts, hats, bags, water bottles with the fantastic logo !!!

A portion of ALL SALES will go to CTF! (Children's Tumor Foundation)

So please check it out and buy yourself or your child, or even someone you know who has NF, something from my Cafe Press store!

If you have any questions, contact me :
Here is the Link to my store!!

Motivational Monday

I'm finding it harder and harder to come up with inspirational or motivational things. Truth is, lately, I have been quite depressed. I created this blog, and the daily challenge of writing, so that I could keep my feelings in check. I want to keepmyself from going down the road that takes me into the darkness. I have been down that road many times, and even though it's very familiar, I always find myself lost.

I have to trust more, worry less. Hmmm. easier said than done. It's in my nature to worry and stress over things that I have no control over. In fact, if you trace back to my family tree...It's in my genes! My Grandmother, my Mother and me.

It's one thing to worry about money, jobs and bills. It's whole whole different thing when you are dealing with such an unknown and progresive disease like NF. Its tight grip on my children often makes me fall into the "why me? why this?" pit. How can I look into my children's eyes and really tell them what's happening? The tumors, the pain, the constant Drs visits, the eye trouble, the teasing...How can I possibly protect my children the the constancy of NF?

I pray every night...every single moment I can, that God keeps their bodies strong...and their spirits stronger. I pray for God to give me the strength to give them what they need. To be able to answer their questions with honesty, love and respect. And, as I deal with my own NF, I pray God watches over me....Giving me the chance to watch my children grow up.

So, I guess my 'Motivational Monday', is simply that I am here...I wrote, just like I promise I would. We all have to choose the paths we go down....will you choose the one that makes you feel lost? I will leave you with a quote from one of my favorite movies of all time, "Sleepless in Seattle". To all my new friends....Have a GREAT week!

"Well....I'm going to get out of bed every morning. Breath in and out all day long. Then, after a while I won't have to remind myself to get out of bed every morning and breath in and out."

Friday, August 14, 2009


I am working on something...and it will be ready on please check back!!

Thursday, August 13, 2009

Freaky Friday

You stare and point,
at something new.

If I am a freak,
than so are you.

It's ok
that you dont understand

But I'm just like you,
with bumps on my neck, arms and hand.

If you stopped
and looked beyond,

You'd see inside
and build a bond.

Instead you judged
and pass me by,

You laugh and stare
and make me cry.

This is me,
my heart is true

but, if I am a freak,
Than so are you-


Wednesday, August 12, 2009


James O'Neal compares himself to the 'Elephant Man'......Neurofibromatosis, has deformed his face, but this mans heart and soul are perfectly in tact. NF commonly mistaken for 'The Elephant Man Disease' affects 1 in 3000 people world wide.
People affected by this condition develop non-cancerous tumors along their nerves. The tumors are called neurofibromas. They are a mass of different types of cells that grow on and surround nerves.
Neurofibromatosis can also cause skin discolorations (also called "café au lait" spots) and bone abnormalities. Men, women, and people of all racial backgrounds may develop the condition.
"I just tell people this is who I am, it's the way I am. If you don't like me, you don't like me," he said. While some may stare, laugh and point their fingers....James faces life with bravery. James sees hundreds of people a day, during his job as a cashier at Safeway. He is not hiding. He is sharing his spirit with everyone that comes into contact with him.
I love seeing this kind of story....His customers like him so much, that they started a fund raising website, to help James raise the money, for his surgery. His employer even donated the first 10,000. It's plain to see James has truly made his mark. He is an inspiration to so many!!
I am in love with James' THRIVING with NF. He teaches all a lesson. When I asked my 8 yr old daughter what she thought of James' picture...her responce was as innocent as it gets...."I bet, if I were to meet him, he would be a very nice man." I sure wish we could all view life, looking beyond physical appearances.
Way to go James!!

What about ME Wednesday!


I remember making cookies with my mom. Our family was always busy, but every once in a while, she'd sneak me into the kitchen and surprise me by having me help with chocolate chip cookies!

I cherished those happy times with my mom...and remember how happy she was. We'd talk as we created the warm and gooey treats that we all loved! My brothers would run into the house, and devour several cookies, then run back outside. Mom and I would laugh.

I love creating these kind of memories with my own children. It makes so happy when one of my kids comes up to me to tell me I am their favorite mommy. "I sure hope so!" I say. I can see that I am filling them up with so many good memories.

Yesterday, we made chocolate chip cookies. It's always fun to let everything else go, take a break and get messy with the kids. We got all the ingredients out, and made a assembly line. Each kid had a job, and they were all set to do it well.

They all pushed the stools up to the counter, just waiting for their turn to crack an egg, measure the sugar, or use the mixer. We made a double batch, to make up for all the cookie dough they were sure to consume. :)

After we finished mixing, I gave each of the kids a beater or a spoon and sent them outside. I bake a few cookies and set the rest of the dough in the fridge. (There was a lot of dough, and didn't have time to make it ALL)

As I was cleaning up the mess...I thought back to when I was a kid, making cookies with my mom. I smiled. Even though there weren't many memories like that for me...I'm glad I have any at all.

During all the times of sadness....My mother would stop, and the light would shine, even if it was for just a little while...I am determined to not let the stress of everything, stand in the way of my childrens happiness.

I had left the kitchen, to switch the laundry, came back in to find the fridge door opened and standing on a stool was Riker, my 4 yr old, with his entire hand, stuck in the cookie dough....he pulled out his hand and laughed as he ran away.

Funny kid. I sure hope he doesn't get a belly ache!!

Monday, August 10, 2009

Turn it around Tuesday

I didn't grow up religious, in fact I grew up believing God was nothing but a mean monster, who punishes those who don't obey him. My mother would constantly curse Him, and tell me that Mikey's problems were all God's fault.
That wasn't the picture my Aunt had of God. Her house was decorated in crosses and pictures of Jesus. I remember this one picture...It was of Jesus coming out of the clouds, holding out His arms. I used to stare at this picture and remember feeling so confused. He didn't look like a monster....
I told my mom one day, that Jesus was my friend (something I probably picked up during one of my stays with my Aunt) "Why would you want Jesus as a friend", my mom replied. "He made your brother sick". I cried and ran away.
I was 6 yrs old and remember it like it was yesterday. My very first prayer. "Dear God, please be my mommy's friend, and show her you are a nice man. Amen."
Sadly, my mother has never truly been friends with God. She won't listen to talk about the NF being just something in life to deal with. She has lived a very hard life...and will probably never accept God into her heart. It makes me so sad, that she carries this guilt and anger around with her.
When I was diagnosed with NF, then two of my children, my mom fell deeper into her cycle of guilt, blame and anger. Her eyes dark and distant. I told her that I would never believe this was a curse. I was happy with my life, and my kids having NF, was not God's punishment.
I knew my words were bouncing off her, she had already made up her mind years before. I was determined from that moment THRIVE. To 'turn-it-around'. Never using God as an outlet for blame.
The cool thing about that He will always be there...waiting for my mom, to let everything go. To open herself up, to something amazing. Maybe one day she will do this. Until then, I pray, "Dear God, please be my mommy's friend, and let her know you are a nice man. Amen"

Motivational Monday

When I was thinking about today's blog and what I could write that could possibly be motivational....I struggled. I haven't been feeling to "inspirational" lately. In fact, I've been very depressed. Not so much with the NF....I mean the NF is always there (kind of like an annoying neighbor) but with just life in general.
I'm happy with the basics. I am grateful for the place we live. We have food to eat and I am surrounded by people who love me. But do you ever hit a point in your life, where you wonder how you got where you are?
I never expected to be "here". For those who know me closely, you know what I mean. It's almost like I can't hang on to anything, because of the fear of it not being mine. I walk around in my current life, just waiting for "things" to be taken away.
I go through my day, envious. Always watching, always wanting. As I sit here now, I wonder why it is I do this. Is my life really so dissatisfying?
I was chatting the other day, with an old friend. I used to babysit her young son and was always jealous of the life she lived; big house, nice cars...just really nice stuff. I would picture my future, and would pretend, it was me living in that house. It was what I always wanted.....
She asked about my family and how everyone was feeling. As I went through the children, and myself....she stopped me. She shook her head and smiled, and told me how my face just lights up when I talk about my kids.
Years before, this woman had gone through some medical issues, that required her to get a full hysterectomy. She had one child, but was left feeling so empty. She came from a big family, and always longed to have one of her own. What she said next, left me speechless.
"For years, Kristi, I have to admit...I was always jealous of you....being able to have children. Your big family....and the love that just oozes from the seams." She began to cry, and hugged me.
She, was jealous of ME? I couldn't believe that. "You have everything I ever have wanted, Kristi."
Looking back on that moment, I feel guilty for feeling depressed with my current life. I DO have everything I ever wanted.....just not in the way I thought. Why am I always looking over the fence, when what I have in my own backyard, is...perfect?
So a goal for me, and maybe you....appreciate what you have. I do want things to be different, want a little more money, want a little less weight, want a different car, bigger house....but really? If I'm spending all of my time looking at what everyone else life will pass me by.
I'm going to focus on today...Live my life. Love my life. And be grateful.
But first I'm going to apologize to my husband.

Thursday, August 6, 2009

Freaky Friday (anything goes)

These are my kids. They bless my life so much! Each one has their own unique way of touching my heart.

I feel like I am one of the worlds luckiest people......My choice to have a large family was the best decision I could have ever made.

My kids fill me up with so much joy and happiness, that without it, I'd be a lost soul.

I had one woman question my choices in bringing children into the world, given the chances of passing on NF. My answer was simply this...."If I lived my life on the 'what could be'...or the 'what if....' I wouldn't truly be living. I may as well just crawl into a hole and bury myself. Living, scared of what COULD happen...isn't living to me."

And...I'm here...I have NF....and I love my life, despite the NF. I know medical problems can arise from from NF....But each and every child is a blessing, and we will take the problems as they come.

To Rachel, My sweet little daisy....I love you more than life itself. I promise to be with you every step of the way.

You are so important to me....and I know this disease is going to become something you hate to deal with....but for now.....I love that you have such a great way of making the best of things.
You always make me smile.
I know the times at the Drs gets kind of scary....but I will be there, holding your hand, for as long as you need me to.


To Braden.....You are a fighter. You always make me laugh! Your sweet nature and fighing spirit can get you through anything!!
I promise to look out for you....To not let anyone take advantage of you or treat you badly.

I promise to stop everything and play video games with you.

Thank you for being so kind....Thank you for blessing my life!


Wednesday, August 5, 2009


Operation Sisters Love

Facebook has been a great way for so many people to connect. I have met wonderful families, who are dealing with NF, just like us. It's comforting to know, that we are not the only ones battling this disease.
I met Amie Broeiman. Her daughter, Emma has Neurofibromatosis, and has quite a long list of medical issues, because of it. This is a family that is THRIVING. The challenges are tough, but they keep fighting!
Emma has a big sister who is 13 yrs old. Allie, started a non-profit organization called 'Operation Sisters Love". Allie says she wanted to so something to make the children who are staying in the hospital happy. She told a few people about her idea and started receiving donations. She began making blankets for the children in the hosptial and has made quite the impact!
I was immediately taken with this little girl. She thought of an idea....and made it happen. What way to touch so many lives! This is what THRIVING is all about.....taking the diagnoses of a disorder that can cause so much pain....and finding the positive.
To Allie---Keep up the good work!

Tuesday, August 4, 2009


I have been in a wacky funk lately, sort of obsessing over this NF. My fingers exhausted, from typing in my childrens symptoms....I worry about them. I think about the tumors in their heads, wondering when things will get worse.

I do push that worry aside....for them, but hide within myself with this weight, pulling my heart down.

Rachels brain tumor, is on the left side of the basal gangelia.....motor function and speech can and have been affected by this tumor. All we were told to "watch and wait".....I hate when I am told that...It's like the Drs don't even want to try.

Rachel is doing okay.....My THRIVING little sweetheart is such an inspiration. She is my silly little girl. She loves to be tickled. She loves Mustard and Jelly sandwiches. She is head strong. She is tiny, but strong. She loves DORA. She believes she is a Princess. She melts my heart with her hugs. She snuggles and loves to be held like a baby.

Braden has several tumors at the base of his brain. These tumors cause him major headaches. Braden has been behind his whole life. He is just begining to realize that he is "different"....Kids his own age don't understand....he has been made fun of and treated badly by some of his teachers. He needs a voice --so badly...This school year we have made some significant changes. He has a voice now...he will THRIVE.

Braden hasn't had a headache is a few wks. He takes medicine everyday, to help control this. He is such a sweet boy. MY video gamer. My BIG BOY who still loves to hug his mommy. He loves bugs and isn't afraid to squish a spider for me. He loves the discovery channel and will watch it all day. He has the most blue eyes, I haev ever seen. He loves EVERYTHING spicey.

So why all of this on a WACKY WEDNESDAY? Because I wanted everyone to know, that despite all the medical issues.....we choose to PLAY.....Be silly.....I will spend my life showing these 6 kids of mine.....that life doesn't have to be all about stress and problems......You can look at the WACKY SIDE of things and have fun.

Monday, August 3, 2009

Turn it around Tuesday

I had a photo taken of me recently, that honestly made gag. I couldnt believe that person was me. I have become very unhealthy and hate myself for it. A part of me feels, that the fatness covers the tumors...or makes them less obvious....but in reality....I feel so horrible about my body anyway...that being fat just makes it worse.

Being fat has protected me to some extent from a lot of pain....but in return has caused a lot of scars. I don't like myself at all....I have to struggle to be happy....I'm tired and frustrated.

My 'Turn it around Tuesday', begins with a challenge for myself. (and please feel free to join along) I want to feel better, look better and I want to set a good example for my children. How can I expect THEM to make the right choices, when I dont?

So I have at least 50 pounds to lose. Starting today! I will add a menu bar to the right of the blog and a poundage calculator. I will excersize for at least 1 hr each day. (I can easily fit that in, by just cutting out an hour of TV)

Who wants to join me?

Sunday, August 2, 2009

Motivational Monday

I heard a really good sermon today. It was entitled, "Man does not live by bread alone". I didn't hear anything new today, but I heard it in a new way.

The sermon talked about how we as humans require validation....someone to tell us we are worth something....And how people, in general look for that validation in everything but God. I know I do this all the time. I search and search for people to make me feel okay with life.....It rarely works, and usually backfires. I end up longing for more, and feeling worse than before.

We all have a "hunger"....for validation. Some try to fill that hunger using relationships, food, work, sexuality, desperate to fill that need...only to fall short, longing for more. Unmet desires can be very frustrating. God knows every single desire of my heart...if I started with Him, the path would have been easier.

I have prayed and prayed .... trying to show God my desires. I want this NF to go away. I get so mad at it sometimes, that I have often wondered if it was a curse. "How can I possibly live and learn anything from such a horrible disease?" A lot of this anger stems from watching my own mom, blame God for damning us.

But as I grew and learned more about God, I began to turn away and plug my ears, whenever my mother would go on one of her rants about this disease. I refused to listen to it...and would often tell her to shut up. I saw how empty my mother was, and how trying to fill her hunger, was not my job.

Even today, my mother holds so much guilt and anger over this and will probably never let it go. I had a conversation with her on Saturday, we talked about what's happening in my life, and with the kids. I felt hesitant to bring up the issues my NF kids have been facing, but briefly touched on it. Her tone switched and she lets out a heavy sigh -- She swore blamed God again. What she doesn't that this family is THRIVING WITH NF. But trying to let her that, only frustrates her more SHE has to make the choice to let God in, to heal her wounded heart. The path is her own. Even as hurt as my mother is, God loves her. God knows exactly what she needs......she just needs to let go.

I am being directed and guided down the path I am suposed to be on. I am a woman, who has NF, but if I let that be ALL I am...I am not living up to God's desires for ME. I need to go to Him for my make me okay with life. I sure wish I learned this earlier in my life.....but what's so that it's NEVER too late!

Saturday, August 1, 2009


It's been a tough day--Kids are sick...and I am feeling very overwhelmed. I read a quote somewhere, that someone compared their life to "climbing out of wet cement". That's how I feel today. Almost paralized as I moved through my day. I did get a lot done though. (Started my NF website, made meals, watered lawn, chkd fevers, laundry, took a walk--seems a lot more when you write it all down) But I still, found myself mentally sluggish.
I was envious today....In doing that, I made myself feel awful. (I guess that's why God commands us not to do this) Even still, I went down this road. I got angry and resentful. I questioned the path that my life has taken.
It's amazing, that a 15 minute conversation, ended up making me question everything. But why? What is REALLY that those other people have, that I do not? I love my life -- and everything/one in it.
It took me a while to snap out of it....and as I look back....I can't believe I let that pull me so far down. Boy have I learned a lesson (Thanks God)
When things go wrong as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low and the debts are high,
When you want to smile but you have to sigh,
When cares are pressing you down a bit,
Rest if you must,but don't you quit!
Life is strange with its twists and turns,
As everyone of us sometimes learns,
And many a failure turns about,
When he might have won if he stuck it out
Don't you give up though the pace seems slow,
You might succeed with another blow,
Often the goal is nearer than,
It ever seems to a faint and faltering man,
Often the struggler has given up,
When he might have captured the victor's cup,
And, he learned too late, with a groan and frown,
How close he was to the golden crown.
Success is failure turned inside out,
The silver tint of the clouds of doubt,
You never can tell how close you are,
It may be near when it seems so far,
So, stick to the fight when you're hardest hit,
It's when things seem worse that you must not quit.