Sunday, February 28, 2010

Motivational Monday

I sometimes struggle with what to post. Sure this is a blog about NF...but it's so much more than that. It's about 'THRIVING' with NF. Even as I sit here in the waiting room, as my 7 yr old daughter gets her MRI, I know that my family is so much more than Neurofibromatosis. I AM so much more than the bumps on my body. But I know, that for some, it's near impossible to see past that.

A person who is short, is...well short. There is no hiding or changing that fact. But it is not WHO they are. It's just what is. A person who has Neurofibromatosis, has tumors, you can hide them, or you can't...I went for years covering them up, wearing extra clothes, avoiding the sun--any number of "tricks" I learned over the years....Even today, I find myself in situations that may make my NF more noticeable and I want run, but I try to remind myself, "even if you can find JUST ONE person, who sees past the bumps on your face, then you have made progress."

I shoot for that, on a daily basis. Sometimes it works, sometimes it doesn't...but I'm no worse off than I was before....and perhaps.....I was a conversation piece for the people that were staring at me. Who knows....?

I'm keeping it short and sweet today---because I want to be there for my daughter. She is so brave and I'm so very proud of her. On the way to the babysitter's house, Riker and Rachel were talking about how Rachel gets to play "Snow White" for the day and "sleep in a tube"... Riker asked me from the backseat, "Mommy, when will I have MY MRI?" Rachel says to him, "Well you don't have NF, like you don't get one!" Riker replies...."No fair!"
Ahhhh the simple and sweet minds of children......I love it.

I will Update MRI results as I learn them---THANKS FOR ALL THE PRAYERS AND WELL WISHES!!!

Wednesday, February 24, 2010

Thriving Thursday

When I was first diagnosed with Neurofibromatosis, an overwhelming sense of fear came over me. I wasn't some child, who could run to her parents for protection. I was an adult, who had children of her own.
I was left feeling an overwhelming sense of guilt and shame. I knew what NF was, in fact I had a head full of knowledge about it. I even had the birth marks and tumors all over my body, that proved without a doubt, that I had this dreadful disorder.
But I still denied my NF, like it was some deep, dark secret, I never wanted to let out... And if the Drs hadn't said anything about---then why should I worry about it? But now a Dr HAD noticed... I was left feeling exposed and lost.
Three of my other children had already shown signs of possibly having NF too, but the Drs always passed it off as nothing. I was in deep denial. I love my children so much and would never want to pass on a serious and aggressive monster like NF. I never regretted my decision in having children ... and still don't. But even with my "head full of knowledge" about NF, what I didn't understand was ins and outs and the real seriousness of Neurofibromatosis.
I saw my brother grow up with NF, sure he was sick, but NF was never explained to me. I never knew what was happening to my body or how I should deal with my symptoms. I was never told I had NF and was always afraid to mention any issues I was having. I also learned that my mother's "bumps" were because God hated her and was punishing her for being evil.... and now the bumps were beginning to appear on my body.
I was scared and afraid of NF, but none of the Drs ever seemed concerned. I had 5 pregnancies before any doctor would ever mention NF to me. I guess you can call me lucky. Or I guess you can say, I just ran into some really ignorant doctors. The tumors were there, no doubt, but I went 33 yrs before they were noticed.
In 2007 - I got my wake up call.
I am a mother who has Neurofibromatosis. I am not ashamed. I am not hiding anymore. I live and breathe for a better tomorrow. I THRIVE, so that my children see their mother walking proudly, even with a diagnoses of NF.
I refuse to hide in the ignorance of others. I will teach my children -- Even the children without NF to WALK - and TALK PROUD about NF.


Tuesday, February 23, 2010

Turn it around Tuesday

I struggle, just like everyone else. I worry that I'm not good enough or that I will say something wrong and someone won't like me anymore and "unfriend" me. I stress about this blog and what to write...I want to make it perfect.
But what I have learned over the past year, is that my friends don't require perfection. All that they require, is honesty....and someone to relate to. I am so thankful that I can provide this for you, because YOU provide it back to me in so many ways.
The blog I began before I started this one, was filled with anger. It was still me...but it was all my frustrations poured out first, before anything positive....and what I learned from this was that I was always -- ALWAYS in a bad mood.
ACTIONS follow ATTITUDE and it took me a LONG time to realize this. But when I decided to 'Turn it Around' and Thrive...a transformation in me took place that affected not just me, but everyone in my life.
It's been over a year now, since I started this blog...and I have to say, I am the happiest I have ever been! When you choose to not just accept the things in your life that are challenging, but embrace them, you will notice a transformation as well.
I have learned so much in this past year and have made so many friends. I wanted to thank each and every one of you for your love and support. Your encouraging words.....Your cyber hugs. But most of all I want to thank you for pressing forward and never giving up.

Monday, February 22, 2010

Motivational Monday

When I tell people that I have Neurofibromatosis, I always like to watch their their face, for a reaction. Sometimes I get get shock...sometimes it's fear...but most of the time it's confusion.

I've personally known about 'NF' my entire I've had 35 + years to read up on this disorder and how it affects people. But I never wanted to believe that it was something that would affect me.

Even at 5 yrs old, I could say the word "Neurofibromatosis", and explain to other people that my older brother Mike was getting chemo for a brain tumor.

But 'NF' was always something HE had....Not me. It wouldn't be until I was 33 yrs old, that I would be officially diagnosed with NF myself. A devastating blow, but one that I knew was coming.

I had the bumps, I had the birth marks, I had the freckling...But why had I gone undiagnosed for 33 yrs? Why had no doctors recognized NF in me? I was scared, but at least I knew what I needed to do, for ME and for my children.

My oldest child who has NF has made me the proudest I could be...She has started a blog (without prompting I might add) About being a child living with NF. I am quite impressed with her. SHE is continuing the legacy.

Life has its twists and turns and unexpected bumps in the road (pun intended) -- So what are you going to do with that? NF has taken our family down a road that I never ever wanted to go down. But here we are. The choice is up to us in how we choose to make our could be a long and torturous one, or we could choose to take what God has given us and do good with it.

NF isn't fun, I know that and understand that. But we can't just hide and suffer in silence. People need to know what it's like living with NF. Please reach out.... I know what it's like to want to hide from NF. I was scared too. The best information comes from people who actually have Neurofibromatosis. All we have to do...Is to get people to LISTEN.

Tuesday, February 16, 2010

Turn it around Tuesday

I remember puberty....It was not pleasant. I was awkwardly, plump. Wore glasses, and didn't know it then, but I had Neurofibromatosis.

I was constantly made fun of and tormented during the most fragile times of my life. Fingers pointed, rocks thrown...

The constant moves made the issues even more difficult, because I had no friends, no roots, and no real place to call home.

I vowed, even as a adolescent to grow into the type of person, that would never treat anyone with the type of disrespect I had been shown. I knew I wanted to be a mother, and promised my future children, that I would do everything in my power to protect from from the cruelty I was experiencing.

But, now...that I am a mom. I see that it is impossible to protect your child from the outside world, and the meanness it can bring. All I can do, is teach my children to be strong and to stand up to what tries to bring them down.

Everyone, at some point deals with being made fun of. I remember one particular day in junior high....I was walking home from school, when some boys got behind me. "Why don't you look normal?" "You're so weird!" another boy said. I just remember walking faster and didn't matter how fast I was going, they always seem to keep up. "Come on fatty, we're just having fun!" My face was red and hot.....It was a LONG walk home, and I wondered if they were going to follow me the entire way......One boy scooped up a rock and threw it at my back pack. The others laughed and began picking up rocks to throw at me. "Let's see if we can make her run!" Just as the boy said that, one big rock hit me in the head. I turned around and the boys ran away. The throbbing pain I felt as I walked home, pulsed through my entire body. I never wanted to back to school. I was done. I was embarrassed. I was mad. I was hurt.

But I did go back....I faced those boys, and even today...I face people just like that, who throw rocks of criticism at me everyday. We can choose to face our battles....even though, some days--we want to run from them. I know the road is hard....scary. But running from what scares us leaves us heading in the wrong direction, leaving us lost.

One at a time, we can change the future helping to teach others, that it's okay to be different...even okay to be "weird". In fact I THRIVE in knowing I am different.
I wish I had someone telling my 13/14 yr old self, that it was okay.....That I would be ok...but I am here now....hopefully changing the future for my children, so that they will NEVER have to endure the same kind of pain I did.

Monday, February 15, 2010

Why Why Why?

"Why are people mean to me mom?" I just hold my 12 yr old son close to my heart and tell him the only thing I know to make him feel better. "Those kids don't understand who you are, and how wonderful you are....and it's their loss if they don't want to be your friend."

My NF children know they are "different"...They know that they require a different handle on life. (Additional help & modifications) But they are far from stupid. They pick up cues faster than I do sometimes....and they know when they are being treated unfairly.

My children and I were talking about my book and my writings.....and why I "TRY" to blog everyday. MY 9 yr old daughter (who does not have NF) says to me, " I think it's really cool that you have NF, and you talk to others who have NF and try to make them feel better. Maybe I can start a blog too, and talk about what it's like to have a mom and 2 sisters and a brother with NF."

WOW.....all I could do was smile! My 14 yr old daughter who does have NF chimes in...."Maybe we can do it together and I can write my perspective and you can write yours! We can call it- "'A Child's View into NF'...."

My jaw just dropped as I just listened to the conversation building between my daughter's. This was amazing. A connection was starting that I wish could happen across the planet.....but it WAS starting.

I know this blog post is all over the place today....But I had lots to share......Standing up for what you believe in, fighting for what's right....I will always and forever do that, for my children and for myself and NEVER apologize for it.

I am doing what I have always wanted to do. I am building up a strong family. Children who know what direction they are going in, and how to fight for what THEY believe in.

I am so proud of my family...and my choice to have children. There is nothing I have done in my life, that has brought me greater joy, than watching my children grow -- and THRIVE!

Thursday, February 11, 2010


I have plenty of respect, and give it where it is deserved. Lately, it seems doctors and teachers, people who we look to for guidance and answers have slammed shut that door of respect, and don't seem to care. (at least in my situations)
With my doctor, I have gone in begging her to help me....basically on my hands and knees, crying out to her "FIX ME...FIX ME!" " I don't want to live in pain anymore and you are supposed to be the one who can fix me!!!" I get silent answers, and often no hope of any relief.

With teachers...(who I very much respect, I was one, and my mother is one and I know how challenging the job can be) I have found- first off they deserve a HUGE raise. They are worth far more than what they are paid....and do much more behind-the-scenes then anyone will ever know.
But I just feel that there isn't enough out there, both for the child and the teacher --- to get everything possible out of the learning experience. Teachers are stretched beyond comprehension....children are frustrated, and goals end up in the gutter. Then no one is happy.
Over-crowded classrooms, under-paid staff....under-educated staff, can lead to situations like I experienced the other day, at my son's IEP meeting. I certainty don't blame the teachers for not being prepared about the NF....But this was not Braden's first IEP meeting with this teacher---she knew very well about NEUROFIBROMATOSIS, from our previous IEP meetings.
I do applaud the teacher's for wanting to know more, even asking personal questions about NF impacts our daily life--that really impressed me.
What my post was about - was simply me...venting a situation that happened. It doesn't make me " closed minded " just makes me a mom who doesn't want to see her son become someone people laugh and point at. My blogs - are of my doesn't make it fact for everyone....It's what I live...and how I live, seen through my eyes--
My son has to live with this for the rest of his life, far beyond the IEP meetings ....
All he wants is a little Respect.

Wednesday, February 10, 2010

Washy Wednesday

YAY- Our washing machine has been replaced! I was about 12 loads behind and today is my catch up day! (how fun!) I love the new washer. It's FUN and really cool! The night we got it home, Riker asked me why we got "Two dryers now"....I told him that we were going to wash all of our clothes in the bathtub, and dry them in the dryers. LOL I guess this machine does kinda look like a dryer. :)

During our first load...The kids sat around the machine, watching in awe, as the machine twirled around and sloshed the clothes. "WOW"...they all said! "Time to cancel cable!!" LOL

I love the way the house smells while doing laundry (everyday)

Tuesday, February 9, 2010

IEP's and Tongue Twisters


How Much Wood Could A Wood Chuck Chuck, if a Wood Chuck Could Chuck Wood?

Good Question...I honestly don't really care. But sitting in the the small group, at Braden's IEP meeting yesterday, I began to wonder how bright our supposed "leaders" really are.

Do people really ponder questions like a wood chuck chucking wood, then make up a funny rhyme about it?

Anyways....Sometimes at these IEP meetings I have no choice, but to 'zone out', because they can get overwhelmingly exhausting.

As we were discussing the modifications of behavior and social skills part of the IEP, Neurofibromatosis came up in the discussion.

We had talked about our 'condition' at the beginning of the year and I even gave each of the teachers a wonderful print-out provided by The Children's Tumor Foundation, that explained the 'NF child' in a very descriptive, beautiful way. (thank you CTF for this) But it seems this print-out got lost, and the teacher just wanted to ask ME, the mom, some personal questions about how NF impacts Braden's life. (I was thinking "hmm this meeting is supposed to be 45 minutes...The ins and outs of my son and the way NF is a part of that would never be explained in 45 minutes! Like a spider's web....delicate and complex").

The teacher's began to joke about Neuro-Fibro-ma-tosis, in a light hearted, very unoffensive way. In fact, I kind laughed inside of myself at their ignorance. "Wow, that's such a long word and hard to say." One teacher said. Another said, "Yeah, kinda like a tongue twister, try saying it 3-times fast!" "Neurofibromatosis----Neuro--fibro--moy....ohhh DARN.....That's sooo hard to say!!!", the teacher said. And me, being me, finally gets to say the response I have been waiting for ....since I began blogging (and Thriving)........ "Think it's hard to say? Try Living with it!"

The room feel silent. The playfulness was over. How does NEUROFIBROMATOSIS impact Braden's Life ? Let me sum it up for you. It makes him stronger (not weaker), He learns different than other children, so help teach him, he loves different than other children, but still needs the same encouragement, he is soft spoken, so listen better, he may need to be told over and over to do something...but eventually--He'll get it, so praise him!

NF impacts our lives in so many ways, but only negatively, if we allow it. We have chosen, as a family to keep as much bad out....and to seal in as much good as we can. We focus on the good times, the happy times, because we know, there will be plenty of bad.

We are constantly "turning it around"...and finding something good....Because in life that's what you need to do. If you focus on the bad---that's all you will get.

Monday, February 8, 2010

Motivational Monday

I try to respect my doctors, I really do. When I go the the Dr, I respectfully listen to what they have to say. But lately, I have to wonder if some really know what the heck they are talking about.

Neurofibromatosis isn't THAT rare. 1 in 3,000 people are affected with NF in some form. Which makes me wonder why there aren't more Drs who know how to treat the symptoms that come with NF.

I actually had one DR recently tell me that my NF should not be causing me any pain...Ok maybe it should NOT, be, but it IS! She went on to tell me, that she would not prescribe me any pain medications because her past patients had taken advantage of her. So round and round we go.

It's like I am trying to change a dirty diaper with one hand tied behind my back. The job, however tough it may be, CAN be done. There ARE solutions and ways to do it....I just need to find them.

I have an MRI that diagnoses me with hydrocephalus. I have NO history of EVER abusing narcotics. And....I am very obviously in pain....and my Dr doesn't give a damn. "The only thing I can do for you, is UP your Topomax, Kristi."

(I take 100 mg of Topomax nightly and have found no change in my headaches. All I have found happening is blurry vision, my hair falling our and I'm dizzy and hell)

I ask this "doctor" about sending me to a pain management clinic and she tells me that there are none available in our city. I swallow hard, and close my eyes.

What does one do, when no help is available? Where do you go? Well....You just keep searching for that one place or person who CAN help you. I found that place in The National Institute of Health. They know about my headaches.....I have Drs there who listen...who care. I hope one day, I can participate in research for NF and headaches. Until then, I won't give up....give fighting....keep THRIVING.

Thursday, February 4, 2010

Thriving Thursday (Guest Blogger)

Having a rare genetic disorder puts you into a whole different world. You meet people you wouldn't have met, if the illness had not been a part of your life. For that, I feel like Neurofibromatosis has been a blessing. So many lives, so many families, touched by NF. I am thankful for each of the friendships I have made, on my journey.

Thanks to FaceBook, I met Michael Forbes. A 40 something single guy, who touched my heart. His personality and brilliant writings drew me in almost immediately.

He's just a guy, who is out there, fighting the good fight, but with that THRIVING attitude that pushes him to the top! I am proud to call Michael a friend and proud to have him a part of my THRIVING with NF blog!

Today, he tells and inspiring story of overcoming addiction, fears, and depression. Something we all deal with on a daily basis. I connected with this story and felt the pain Michael had to deal with and I am proud of him for being brave enough to share his story.

Please leave him some love, and let him know what you think!

**Copied with permission from Michael Forbes**

Changes contain powers that transform how we live. After 44 years, I have learned this valuable lesson and now accept the shifts in the paradigms of my life. Yet, I didn’t consciously acknowledge the growth changes bring until June, 2002 during a doctor’s appointment. I hid in the addiction of nicotine.

At times, the throbbing the pain in my leg was so excruciating that I wobbled while walking. I was discussing with my specialist a proper course of treatment for the plexiform, having finished a years worth of MRI’s, CT Scans, and other assorted tests. The results all negative followed a typical pattern. Tumors bother me for a period of time, I get a battery of tests, and the pain magically stops.

After the exam, I stood behind a curtain getting dressed. Her voice hovered over the white tatted top. “Have you dealt with the psychological aspects of having Neurofibromatosis?” I told her no, yet knew most of my issues related to NF and life were emotional.

I left her office at University of Chicago Hospitals and lit a Marlboro inhaling the disappointment. I walked around the campus, stopping at 57th Street Books and an Asian Noodle restaurant. The immediate point I had to deal with was a constant pattern. Another NF complexity without an answer. The psychological question altered my life when August arrived.

Sure one doctor said he could remove the tumor and was gangbusters to anesthetize me and perform his Jekyll style of medicine. I thought his ego was over inflated and said no. I feared losing my leg, which a second surgeon suggested. On top of that, I had to consider my out of pocket expenses since my health insurance declined more then they paid.

As a child, I remember endless doctor visits, exploring treatment options. I started walking at age 2 and talking at 4. Even this young I felt different. After corrective hip surgery, doctors advised me to stop bicycle riding and playing soccer, because contact sports could cause permanent damage. They also confirmed my previous mind-set.

Given the changes and additional rejection (even the school district declined requests to test me for learning disabilities,) thrust upon me in 13 years, I disappeared into the addiction of nicotine when a friend and I decided to buy a pack of cigarettes at a local pizza restaurant. Neurofibromatosis sucked and adults told me to just breathe through the pain, be normal, and fearless.

Cigarettes provided solace. Their comfort intensified as I entered puberty. My body changed more compared to others, when mosquito bite sized tumors formed along with my facial and pubic hair. Peers teased me about my large head and instead of defending myself, I hid in the hazy fog of cigarette smoke. Even my sin sticks were hidden under the eaves of a local church rarely entering my house.

The other aspects growing up were typical. I became friends with other king sized squares, worked, and dated. I valued this transformation. NF remained the harder one to accept. I believed facial disfigurement would strike me at any time and was scared, rarely discussing it, since I had to be fearless according to adults.

My late teens and early 20’s were easier. In college, I explored various majors earning a degree in Behavioral Science. I worked as a case manager serving the disabled. My identity remained hidden helping others. Peacefulness continued to be found in packs of twenty. Each working day I’d be outside at 10:30, 12:30, and 3:00, feeling blissful for seven whole minutes, while I toked my 100mm friend.

Cigarettes stood by my side as I consumed Barium for CT scans. Cigarettes were there after I spent two hours in a claustrophobic MRI machine. Cigarettes were there for the happy negative results I received. Cigarettes were there when my health plan denied payments. All I had to say was, “God I need a cigarette,” and my savior appeared with the flick of a bic. I desired to quit and accept Neurofibromatosis once and for all.

The warm sunny days of August 2002 finally arrived and a singles camp in Saugatuck, Michigan. From the moment, I pulled up to the sandy – tree lined grounds, magic was in the air. Several morning groups were offered, and since my specialist felt I could benefit from the therapy, I chose massage. This involved exposing my tumors, which made me uncomfortable, especially in front of strangers. Yet, I risked ridicule and enrolled.

A dimly lit cinder block hallway led to the massage rooms. Whiffs of lemony pine aromatherapy scents filled the air and I entered the men’s locker room. The time had arrived to either show off my tumor-ridden body or continue hiding. I put on my blue/gray swimming trunks and slid across the sandy tiled floor into the massage room.

As I entered, quiet new age instrumental music echoed from a cassette player. Several sheet covered tables stood in the center with chairs around the edges. My inner child came out upon seeing a light green sheet with turtles imprinted on the percale. I had these sheets when I was young and keep a souvenir pillowcase from the set in a box of childhood memories. I choose this table as my own and ran my hand across the sheet releasing the memories of being six.

One the first day, the group leader handed out several papers, asked us what we desired, and took questions. I discussed NF referencing the tumors inside my body. After a demonstration on face and neck techniques, it was the participant’s turn. Two gentle kneading hands flowed over my face and neck that morning as my partner touched me sending me into a hypnotic trance. The turtles provided comfortable safety that week of learning a full body massage. No one ran and people wanted more information about Neurofibromatosis. The highlight of getting a massage arrived though by Paige, a woman separate from the massage group.

I was the only person in my coed cabin taking massage. On the evening of August 6 the women talked me into massaging them. After an hour it was my turn. Three women took turns massaging me. Paige went last and with a rhythmic pattern caressed my neck to deeper levels. After a couple hours of sleep, I awoke. Consumed by overwhelming sadness, the pivotal June question my specialist asked surfaced. Had I ever dealt with the Psychological aspects of having Neurofibromatosis?

In the early morning moonlit hours, I sat in an outdoor sanctuary crying. I watched deer feeding on vegetation, felt the light–dew filled breeze on my skin, and heard the crackling waves of Lake Michigan meeting the shore. I started a transition by questioning myself about my life, feeling a new connection in body, mind, and spirit. The compassion of this Unitarian camp, its community, and land catapulted me to a new level of consciousness. Four days later, I left a new man, seeing Neurofibromatosis in a new light, grateful to Paige’s massage, and to God. I was ready to confront my addiction. On November 4, after taking a smoking cessation class and joining a support group, I drew in my last smoke while walking my dogs. After 27 years smoking finally stopped stunting my growth.

Today, my life has become a wonderful and amusing journey. New choices always appear and I have a spiritual connection to the universe. God has always watched over me, including those early years when my cigarettes were buried on church property. Now I am blessed to be me, liberating the scared child, accepting the powers of change, connecting with others, and looking for my soul mate. Neurofibromatosis is finally part of who I am. Only its symptoms need treatment.

© Michael Forbes 2009

Wednesday, February 3, 2010

Whiny Wednesday

Yeah, I do it every time....I push and push until things kinda just explode. I tend to look at things backwards, from the end result first and maybe that's my problem. But I just want what I want --when I want it!!

Yesterday, I found myself welling up with frustration....and no matter how much I tried to control it...I was bound for the edge, no matter what. In fact, I had huge rolling boulders pushing me towards the edge the entire day.

From the leaky washer, the van breaking down, vomit in the car seat, and cancelling an important appointment...the day was just horrible.....I found myself building up with this enormous amount of frustration and tension, and I didn't know what to do, or how to escape it.

Most of my posts are positive and uplifting...but today---forgive me, I just want to whine :)

After the van thing, the puke thing, and the appointment thing--I used our friends other car to get a few things done that needed to (THANK YOU TERRY) and had some time to think and sort out my craziness.

IF the van had not broken down....I would have had to take a puke covered Brooklyn to Bailey's maybe God was working in some way there....? I don't know, the brighter side of things was where I was trying to get myself.

By the time I had gotten home from running around, Bailey had thawed dinner, made sure everyone's homework was done, bathed Brook and had the other kids get their chores at least started.

My bad day vanished right before my very eyes, as my children surrounded me with hugs and kisses...proud of their accomplishments. Even though sometimes, I find myself at the edge...something always pulls me back. And if I happen to fall crashing to the bottom....I can always start over with a new day...A new perspective.

Today is better and I am thankful for that-

Monday, February 1, 2010

Motivational Monday

"I wish to be a Princess, and to see the castle!" Rachel said as her eyes lit up up with excitement.

Lora and Kathy talked to Rachel about where the castle was, and how you need an airplane to get there. The other kids circled around Rachel, like hovering vultures, waiting for a meal.

The wish granters needed to hear Rachel say it....."I WISH TO GO TO DISNEYWORLD!!" She screamed. Our awesome wish granters then talked to us about the technical side of all this and handed me some paperwork, as the kids opened up some gifts.

I was already soggy with tears....I can't imagine how the rest of this wish is going to go.

I sat and watched as the kids tore into their gifts. After all the birthdays and just having Christmas, this was sure a treat! I was so amazed at the thoughtfulness in picking these gifts out...they were perfect!

Rachel opened up a official Make-a-wish Barbie doll, Brooklyn got a Little People Airplane and Riker got a read-a-loud story book. The older kids got gift cards for Target...which we will save to buy goodies for the plane ride!

The wish granters (Lora and Kathy) and I visited as the kids talked about the gifts and about the upcoming trip.

This was an awesome time to help someone understand Neurofibromatosis and its affect on our family. NF doesn't just affect those diagnosed with this life-long monster....Everyone in the family feels the pain from it.

I hate knowing knowing that there is nothing I can do to make my kids better. No cure, no treatments. The progression of Neurofibromatosis, is steady and cruel and I hate every second of it.

But in that moment, while telling Kathy and Lora all about NF, I looked over at my children and saw them happy. They didn't care about NF. In fact, they never really do. I am the one who stresses..I am the one who worries.

So even while NF may take part or all of my daughters sight, cause tumors to form in and out of her tiny body, cause learning disabilities and limit her motor abilities-SHE is the one who is teaching me to go beyond the diagnoses and see past it.

Lora and I have been in contact since her visit with us, and our trip to Disney World is set. March 22nd, out family of 8 will venture off to Florida to stay in "Give Kids the World" resort. We will visit theme parks and have fun...taking NF and squashing it, for a week.
This is the very first vacation for our family, so we are very excited. Make-A-Wish has already blessed my family so much, I can't imagine what is in store for us.