My recent surgery...

The day before surgery - 30 seconds
short of new PR - 1:58:08
Atlanta Half Marathon (7th time)

Hey! Okay, so I thought I'd write a little post on here about my recent surgery... I am back at school and doing well, but still recovering - hence the fact that I am not allowed to run yet.  Anyway, back in 2009, we found out that I had a "lesion" (nice word for "STINKIN' NF TUMOR!!!") along my femoral nerve, in my upper right thigh.

I had been told by coaches that I "favored" one leg over the other, which is common enough to not create any concern- it just means that you strike and push off a tad stronger with one leg.  Other than that, the first symptom in Spring of 2009 when I told the sports trainer that I couldn't feel my kneecap, which created concern- knowing I have NF2, and so I was told to get an x-ray of my knee.  They sent me home and told me that I was fine, but I knew there was a problem.  As the months went by, that area of numbness continued to spread to much larger areas of my leg- up my thigh and down my shin.  I was scheduled to have surgery to remove the now "enhancing lesion" as they called it after my 2nd MRI of the thigh.  About a month before that operation that was scheduled for September 2010, but then after I had done the pre-op testing, it was CANCELED, because they wanted me to get more tests done!  I had to get an EMG to measure the electrical activity of various muscles in my leg, by sticking little needles into the leg muscles. If you are wondering, I think the pin they stuck in my shin muscle was the most painful of them all!

My entire right leg seemed to be getting weaker, particularilly the quad!  When I tried to do the leg extension machine the gym, I could struggle to do 10 pounds or 15 pounds at best, on my right leg, but it felt like about the same effort level to do the same thing with 50 or 60 pounds on my left leg.  I could even see the difference the the size of the leg muscles- IRON on left and JELLO on right! Despite all of that, I continued running, although my stride altered but my body learned to compensate for the uneven strength... my right glutious-maximus (rear) became stronger than my left side glute.

I'd run my first half-marathon (13.1 miles) back in 2003, and had run a best time of 2:01, but usually ran times in the 2:03 - 2:10 range for a half-marathon run on roads, and all of this time just dying to break that 2-hour mark.  A few months after getting diagoses of having this tumor in my leg, I ran the Atlanta Half-Marathon 2009, for the 5th time, plus i've run other halfs as well, and I FINALLY did it... 4 minutes off... I ran 1:57:38 and you know what? I felt like I was on top of the world!  took off those shoes and had terrible blisters but PAIN IS TEMPORARY! (I've also done five full marathons.)

As of June 2010 MRI, the "enhancing lesion" measured approxtimately 5.3 x 3.6 x 1.9 cm.

And after that, I just kept on running... sometimes I told people that I had a tumor in my leg, but usually they didn't believe me, since I'm always running and biking all over the place.  My boyfriend and I did some winter road races, in sub-zero temperatures, and then an open snowshoe championships race.  He decided to do a triathlon when I had gone home for a week, and the next year we both did it, and he preposed to me at the finish line!!!! <3  ...then we both did Syracuse 70.3 IRONMAN!  (and I'm not supposed to be able to swim in open waters or to ride a bike due to lack of balance nerves... and I still had the leg weakness caused by that darn NF tumor!)

Steve kept telling me over and over that pretty soon I won't be able to use the tumor as an excuse for going slow, because when I recover  and the nerve heals, if will get stronger! ... I LOVE HIM!!!

In October, I went to Boston for doctor's appointments, pre-op, met ups with a girl with NF1, Jen, and also participated in many hours of a medical research study about vestibular balance. A week after that, I ran my first ever 50k... yes, that is 31 miles! 

So, the surgery? It FINALLY happened! November 25, 2011, 9 days ago... and yes, the day after running my 7th Atlanta 1/2 Marathon, and barely missed a P.R. time by only 30 seconds, and finished in 1:58:08... I've only made sub-2-hours twice ever, this one and the other I mentioned above.  After the race i cleaned up, and packed up the car, and my parents and I flew off to Boston, where I would have surgery the next day!  We had celebrated our big Thanksgiving family dinner, the prior Sunday, with my grandmother, but we still had Thanksgiving dinner left-overs for the actual day. 

My surgery was at 8am and I woke around 11:15am, I think- well that is first time I noticed the clock. The surgery went very well and my doctor said that the tumor came out relatively easily with nothing apparent left behind.  I was originally told no running for 1 month, but later was told "2 weeks, if its not painful"!

I got discharged the following day and then on Sunday, at 7am, my Mr. Prince Charming came and picked me up and whisped me away, and drove me all the way back to Rochester.... Did I already say how wonderful he is or what?! NO, YOU CAN'T HAVE HIM!

I returned for my follow-up appointment 3 days ago, and he said that it looks like it is healing very well.  When I casually mentioned to the doctor that I had gone to pilates class 3 days post-op he just said "hah, I knew you would!" My mom was there for my follow-up and we met up with Jen also and got lunch. I started Physical Therapy on Friday, one week after surgery.

I will be up and running, very soon! 
I should get back to studying now!

The class is over (and I got an A!!!) ...BUT, this project continues!

This is a post that I wrote a few years ago, about this blog project. It began to die off but I think it has a lot of potential to keep it going. Please read on and consider contributing your story, artwork, poems, or other works...
____________________________________________

Hey, I just wanted to let everybody know that the class for which I began this project has ended, and I really appreciate all of the wonderful contributions that people have submitted, BUT... I am continuing this project and hope to continue getting some contributions of more people's stories... stories of overcoming adversity, ups and downs, surgeries, medical trials, running for research to cure NF, and more!  

Tell your story here, please! To get access to post here, please message me or send me an e-mail at anne.s.noble@gmail.com to tell me your name and your e-mail address, and I will send you an invite to gain permission to post in this blog.  The reason that I am continuing this project is because I really like what I have so far, and my professor even said that he thinks it could have potential to become a book. (If you would NOT want to be included in this future book idea, that I hope to become a reality, you MUST let me know.  I will respect all privacy rights but for publishing purposes, I think that the screen names MIGHT need to be switched to real names, but I am not sure, yet.) 

2011... __________________________________________________________________________

ALSO, I recently switch the automatic view on the blog to be "Dynamic Views" - Please let me know if this setting is causing you trouble or technical difficulties.  I'm just getting used to it myself, and kind of considering switching back to one of the older views.  If you prefer this, please let me know!

I am home for the week, and really missing my fiance, Steve!!! <3

I am having surgery in a few days for the NF2 tumor that is on my right femoral nerve in my upper thigh, so I would appreciate if you pray for me, if you do that sort of thing. The hopes of myself and my doctors is that the muscle in that area will be able to regain some strength after surgery. Thank you! God Bless!  My surgery will be at 8am in Boston, on Nov. 25th. (of course the day after running a half marathon!)

Vestibular Research as a "lab-rat" for NF2

Total darkness

Chair moves left

Was that right or left

I think that went right

oh, definitely left

Lights come on-

then off, again.

Chair moved down

and down, again.

I know I can't say down-

too many times-

I'd go through the floor.

I think that was up.

Was that up or down

It is confusing

hard with no balance

Tilt to the right

Right, I think

Feeling weary now

Chair tilts to the left

Lights come back on.

I hear “start” and beep

I hear “respond” and beep

I have to decide

which button to press

I press the right

then press the left

Repeat hundreds of times

It was mentally exhausting... when I got back, I think I slept for 9 or 10 hours!

---------------------------------------------------------------------------------------------------------

 explanation...

I had an interesting experience on Thursday, I had two appointments and pre-op in Boston for my NF2 , but during the short time breaks before, after, and between each of those appointments and then some more on Friday, I participated in about eight hours of a vestibular research project at Massachusetts Eye and Ear Institute, that I had been asked to take part in. (They paid be a little compensation to do it, which was a nice bonus.) It was especially interesting because they had never done the test with a person with bilateral loss of balance nerves, nor a deaf person, for that matter. I had to sit in a strange looking big robot chair that moves on some tracks, in complete darkness, and then press either of two buttons to indicate which direction I perceived the chair motion having had made. My feet were on a platform below and moved in the same motion as the chair. It could move side to side, or up and down, or tilt right or left. Sometimes I could tell my feeling the direction my body moved, but other times I just had to press a button and guess! This task would be difficult for any person, but I think they were particularlly interested in working with me because they know I have no intact balance nerves, however do these things that I'm “not supposed to be able to do,” such as marathons, triathlons, etc.

Calling... (Contributed with permission by Jess S.- Julia's daughter)

It starts as a whisper.
Many won’t hear it, but those that do...
Will start searching for it.
Some will look high.
Some will look low.
Some will look in.
Some will look out.
Some will look over.
Some will look under.
Some will look in the dark.
Some will look in the light.
There will be some that take to the skies.
And some who will take to the seas.
And deep into the forest.
Those that find it...
Will do many things.
Be they big or small.
Great or Grand.
They will change the world.
Because they found their calling.
So if you hear a whisper.
Go catch it.

NF: A Life Sentence

Pet therapy 2 days after my NF surgery

Hi everybody! My name is Jen and I have NF1. My mom and brother also have NF1.  I never thought anything of it when I was told I had NF.  Other than 'spots' and outer tumors, etc, I thought that was all NF was about. I never had pain or complications, etc. Then in 8th grade (around 1996) I came down with migraines as well as  the most terrible facial pain. I can't describe it. The pain would then extend to my neck. I woke up one morning with my neck all twisted, and I had to stay home from school for a few days. The facial pain got worse so I thought it was my wisdom teeth. Had an x-ray and from there he saw something strange (and it had nothing to do with my wisdom teeth) so I had 2 more x-rays, a CT scan and an MRI I guess to really make sure what they saw. The revelation: a tumor in my skull, and an optical glioma. Had a follow up MRI a year later, and nothing changed, so I didn't see anymore doctors for at least 10 years (when I moved to Boston and learned about the NF clinic at MGH). I actually didn't know the extent to my facial tumor until I moved to Boston. Imagine a flat jellyfish and that's what the tumor in my skull looks like. It wraps around my sinus cavity, my nose bone, my upper jaw (I have a lump in my jaw that dentists keep thinking it's some gum disorder), around my temple (part of my skill is actually lifted at my temple) and somewhat behind my ear. so that explained the facial pain and frequent migraines! When I was first given the MRI, my doctors were not very clear about where the tumor was, how big it was, etc. So I am REALLY glad I am in Boston, and that my doctor is cool enough to show me pictures. Dr. Scott Plotkin is a good guy. :)

Thanks to NF I am short. I also have mild scoliosis and thanks to my optical glioma, I am partially color blind in my right eye. I wear glasses. When I was in school, of course, people made fun of my height and often made fun of my spots. One day people in my drama class passed a note around with a picture of a face and neck with spots everywhere (though I don't have spots on my face). I knew it was about me. I wonder what kind of pleasure that gave them to make fun of my cafe au lait spots.... silly.

Anyway, my face doesn't hurt as much anymore, and I rarely get migraines, but in addition to my facial pain, I developed awful lower abdomen pains for years that was worse than my facial pain. When the pain got worse, I thought it was a gynecological issue. Had ultrasounds, etc, nothing. Then I thought it was a  gastrointestinal issue. So I had an upper GI, endoscopy, colonoscopy and guess what? They randomly found cancer in my stomach- totally unrelated to my pain in my abdomen! This was in 2009. I am still dealing with repercussions from THAT surgery (mainly esophageal problems).

My NF survival wound. You can sort of see my scar
from my cancer surgery, which extends from my belly button
to my sternum. They recut a good portion of my old scar!

 During the summer of 2010, my abdominal pain became excruciating. I had my gastroenterologist run many more MRIs, etc, and turns out I had an NF tumor where I had pain. I didn't find out about this until February 2011. I then couldn't get a hold of my NF doctor until this past JULY to talk to him about dealing with it. Had a biopsy to make sure it wasn't a sarcoma (needle biopsies are terrible by the way! I felt EVERYTHING). The only thing that could be done for me (since pain meds did nothing even oxycodone for a <100 lb person did nothing!) was surgery. So on Aug 23 I had my first NF surgery.  Of course now I have some sensory nerve damage (that's slowly going away). I take 2400 mg of gabapentin a day and that helps tons! I recommend that for any tingling types of pain you might have! And visit a pain clinic. I see a pain psychologist and she is AWESOME. My primary care doctor is also awesome, gotta add that in there too :)

I still have pains in my left and right side. Before my surgery, my surgeon told me that my right side pain was just referred pain, and that it would go away after my surgery. Well, it hasn't. It took 7 years for doctors to finally find the answer for my left side pain, let's see how many years they will take to find something on my right side.

I additionally worry about new tumors growing. I never knew tumors can just randomly GROW with NF, but they do. That scares me. What if more grow back? What if I become in pain again? I seriously could not function from 2010-now. I don't know how I survived my first semester of grad school but I did. What keeps me going is that I know there are people who go through worse.

I call NF a life sentence because those with it have to ENDURE IT. They have to worry about tumors growing randomly, tumors pressing on nerves, surgeries, pain meds, etc. It is baffling to me how NF is so misunderstood, yet it is one of the most common genetic disorders. I am not downplaying other genetic disorders, but NF deserves more attention. Some people have no problems with their condition, but many DO, and when people DO, their problems are awful. And there's usually nothing that can be done about it.  Some people go deaf, some people become paralyzed, some people have disfigured faces, some people can't function because they are in so much pain (back pain, stomach pain, leg pain, etc). I really love how there have been more walks, more races and more fundraisers about NF.

This is Bob :) I have named
all of my tumors

There are several NF non-profit centers around the country that help put on races, etc, so you should check it out. Here is the Facebook link for NF Northeast. This is for Michigan This is for Arizona This is for California, and this is for Louisiana. ... that's about all I can find on Facebook!

I have a personal blog which chronicles my personal battles (and all the drama that occurs between me and doctors). Feel free to follow me and if you have a blog let me know so I can follow you!

Thank you for reading my story.

My Experience with NF2

My name is Bonnie, I'm 24 years old, and I was diagnosed with NF2 when I was twelve.

I was in the midst of puberty, that awful, confusing period where things just start happening to your body and you have no idea how to stop it or control it. Puberty hit me pretty hard. My hair was frizzy and I needed braces and I just had that feeling and look of awkwardness. While the other girls in my grade all seemed to be perfect, with shiny hair and straight smiles, I was the freak with Sideshow Bob hair.

As if puberty isn't bad enough, not long after I got my first period, I started experiencing discomfort, twinges mostly, in my right thigh. We were on vacation at the time and I mostly ignored them, thinking I had pulled a muscle in gym. Eventually, though, the twinges became less annoying and more debilitating and I told my parents. I was taken to a doctor, where he diagnosed me with scoliosis and prescribed an MRI.

I was terrified. I was twelve years old and my mom patiently explained to me that I would be going in a tube for an hour that was loud and it seemed like the end of the world. To me, my first MRI experience felt like being trapped in a coffin--a white, incredibly LOUD, coffin. The only upside was at least I got to listen to music.

A few weeks later, the doctor called my parents with a diagnosis. I had neurofibromatosis type 2, or NF2, as us cool kids call it. I didn't understand the connotations at first. My parents sat me down and explained but all I heard was a lot of medical jargon that made no sense to my addled preteen mind. I just wanted to watch Buffy the Vampire Slayer, thank you.

It wasn't until a year later that the reality of the situation hit me. I was 13, we were in the pediatrician's office for a checkup, and my dad mentioned I had tumors. In my mind, tumors equaled certain death. I cried all night until I was reassured that they were benign and weren't terminal and as long as they were watched closely, I would be fine.

I had my first NF2-related surgery that year. Previously, my only two experiences with the hospital was when I was 3 and had to get my appendix out and when I was 9 and 30 lb weights fell on my fingers, requiring surgery. So this was a pretty big deal for me. I had to have spinal surgery, as one of the fourteen tumors there was pressing on my nerve, causing pain. I was in the 7th grade and I had to be homeschooled for 3 months. At first, this seemed, well, awesome. I wouldn't have to wake up at 6 am anymore! No more immature classmates throwing stuff at me and making fun of me for being awkward. Success!

After awhile, though, this situation became quite lonely. I was in the hospital for a week recuperating from surgery. My roommate was an 8 year old boy who had just had brain surgery. It was terrifying for me. My mom stayed with me the entire time, sleeping in a hard-backed nylon chair. I was 13 and the idea of staying in the big, bad hospital alone was unfathomable. This was Columbia Presbyterian, a hospital that would come to mean hell in my eyes.

As the years went on, I needed to have a few more surgeries, but the NF was mostly an annoyance. At 14, I had my first brain surgery, which took the hearing from my right ear. THe doctors said it would come back eventually, which obviously never transpired. I would have to miss a lot of classes because I wasn't feeling well, or I had a doctor's appointment in the City, but other than that, life was relatively normal.

It wasn't until after I graduated that things took a turn for the worse. I had spinal surgery right after graduation and, a month later, I came down with meningitis as a direct result, an infection. That took the hearing in my other ear. Suddenly I was 18 and deaf. I couldn't hear my friends when they would call on the phone to check up on me. I couldn't hear the doctors. I couldn't hear music. My entire life was derailed.

While I was at the hospital, there was a lot of screw-ups. For 4 days, the doctors had no idea what was wrong with me so I remained in the ER all that time. When they finally figured it out, I was, among other things, forced to wake up at 2am for a CT scan that, as it turns out, I didn;'t need; the results weren't given to us until n oon the following day, after my dad complained countless times. I had a pick line inserted (like an IV inside the body) and I was told I would be under anasthesia and not to eat all day. I didn't, and no anasthesia. My back kept opening up , leaking spinal fluid, because they told me nhot to lay on anything hard then promptly put me on a cold, HARD, metal examining table.

My parents wanted to sue for malpractice. Our lawyer said we didn't have a case so we just switched hospitals. I now go to NYU Medical Center. My doctor is John Roland and he's been caring for me for the past six years.

I have an ABI, but it doesn't work; it abruptly quit on me 3 weeks after I got it. For 5 years, I pretty much did nothing but laze around the house, crying because a lot of my friends had abandoned me, and I felt very alone. Then came RIT.

I was 23 and a Freshman at RIT/NTID, the National Instutite for the Deaf. Suddenly, I had so many experiences that were lacking in my life before. I made friends. I fell in love (with an awful excuse for a human being but that is neither here nor there). But still, the NF haunted me. In 2008, I had major brain surgery to remove a tumor and, as the brain controls everything, for months I couldn't even walk myself. I had to use a walker, a wheelchair. My hand shook terribly. Now I have mostly recovered but I still have issues with balance. I trip over air, and not in that adorably klutzy Twilightish way either. I can't walk in a straight line, making me appear intoxicated all the time. the vision in my right eye is blurry and the eye is very sensitive. Just the slightest irritation will turn it beat red. It...well, it sucks.

My biggest fear is that I won't find someone to share my life with because of my condition. My last boyfriend said he understood then did everything wrong and couldn't cope. I'm 24 and most of my friends are either engaged, married, and/or parents, and I don't want to miss out on all of those wonderful things because of the NF. Most people have large goals--to be CEO of a company or have riches and fame. All I want...is to be happy.

Thank you...

Thank you to the father who took me to that first cross country practice at 6:30am and who sat in his car, watching me struggle to run half a lap on the track.

Thank you to the mother who has always been my #1 cheerleader, but I know she had some doubt and fear about me finishing my first marathon.

Thank you to the student who once told me that he didn't think I would still be able to ride a bike, due to my loss of balance. That week I bought a cheap new bike.

Thank you to the NTID faculty person who I understood to have had told me that she thought I was too smart for those classes.

Thank you to all of the coaches I've had through six years of cross country and three years of track, but I thank one most of all, my first running coach.

Thank you to the endurance team that has supported me through everything, even though we are too spread apart to actually train together.

Thank you to the doctor who took some junk out of my back, sewed me up, asked how I was feeling and laughed when I said okay and then puked on his shoes.

Thank you to the friend who I met through facebook.com, before I came to RIT, and helped me realize who I am, even if she was blunt or harsh, I love you.

Thank you to the running club that patiently waits for every single person to finish every group training run and every race.

Thank you to the wonderful family who has opened their home to me and a group of amazing young ladies, numerous times, even though I'm always causing trouble.

Thank you to the NF doctor at Harvard who told me that I really should not swim at all, especially in open waters, due to my loss of balance. With caution, I ignored.

Thank you to my long time best friend, who has always been there for me, through the thick and the thin.

Thank you to the teacher who when I brought in a 23-page memoir draft for a 15-page assignment, told me I ought to write book, but I basically need to start over.

Thank you to the random people who have asked me how far I've ever run and when they get an answer, their jaws hit the floor and they called me insane.

Thank you to the doctors who have dealt with me, cut open my head - on numerous occasions, and gave me my ABI, so I can "hear" again.

Thank you to the wonder boy, my fiance, who always makes me feel like the most beautiful woman and loves me no matter what.

Thank you to everyone else who has made any impact on my life.

Thank you to God for making my life wonderful and continuing to do so!

My World Without Sound

I live my life in a kind of isolation, a nothingness. I see things
that aren't meant to be seen. My fifth sense has been snatched
away from me, without warning, without preamble. Growing up
all my life with sound, children laughing, birds singing, waves crashing
along the shoreline, only for it all to be taken away. I am lost,
I grieve as if I have witnessed someone close to me slowly perish. For years, I
had no control, over myself, over my life, over anything. I was simply forced
to watch while everything I knew, everything I'd once taken for granted, was taken away.
It is my world without sound. I "hear" things that aren't really there, memories,
recollections of how it should be, but isn't. As I drive in a car, I see a
neighborhood boy bouncing a basketball. I hear the thump-thump as the
ball smacks against the concrete, but it is not really there. When the dog barks,
I "hear" it, but it is not really there. When a child laughs, so innocent, I "hear" it,
but it is not really there. My world without sound. I would do anything, give anything
to hear the waves crash along the shore again.

For my daughter, Shannon...

For my daughter Shannon, who was diagnosed with NF2 in 2002.

I remember leaving home the day you were born. I thought, things will never be the same, and they weren’t.

What love, hope, inspiration and happiness you have brought into my life. I would walk into your nursery and you were always happy, smiling and reaching up to grab life with all the joys it can bring. That love of life and your ability to see good in all things around you has helped you and especially me deal with NF2.

Even in the face of adversity and illness you move forward with courage. You always find the positive side to the ravages NF2 causes to your body.  You have taught me so much and give me the strength to face what lies ahead. 

When NF2 took your hearing and you could no longer sing, you didn’t give up. You used your eyes to photograph all of the beauty you used to sing about.

When NF2 took your sight, you didn’t think of it as an ending but a beginning to teaching and helping others by showing them that no matter what their differences, or handicaps they are to be valued and can be productive members of society. 

Neither of us knows what lies ahead but together we can get through anything NF2 throws our way.  We will always move forward, always look up and embrace what NF2 can never take from us: OUR LOVE.

If I could take your pain away and have the NF2 instead of you I would.  I am always here for you. You are my hero.

Invisible tears

Fall '08 XC- this face says it all

 This does not have a specific rhyme or syllable count format and for that I suppose I should apologize- It is simply the thoughts flowing from my head, as I have learned that it is that type that often makes for the best poetry.

Sweat runs down my face
as I run fast as the wind.
Sun shines on the rain puddles
and reflects on my tears.
Nobody knows I'm crying-
the sweat mixes with tears.

A grin pasted on my face-
for the world to see.
Sometimes I have joy,
some days I'm boiling.
Anger, frustration, confusion-
fill my aching heart.

I finish running for now.
I should be studying,
but I take off for a swim
I am not finished weeping.
Nobody can see my tears,
in the chlorinated pool.

I pull myself together
to paste that smile on me,
for the world to see.
Yes, I am doing just fine,
inside of me, I'm normal-
Normal- like everybody else.

A Tribute to the Parents of NF

It all began with “coffee” marks on my precious new baby’s otherwise perfect skin.
When the doctor said Neurofibromatosis, we entered a new world.
We didn’t ask to go to this new place. We didn’t buy plane tickets or get a triptik.
But we got there nonetheless.
...In this new world there were things we’d never heard before.
There were bone abnormalities called dysplasias, bowing, pseudoarthrosis, scoliosis…
There were tumors called plexiforms, neurofibromas, gliomas, astrocytomas…
Learning disabilities and developmental delays opened us up to things we knew existed, but never thought we’d experience.
Things like special ed, speech therapy, occupational therapy, physical therapy, social skills groups, CSE, IEP...
And there were tests.
Many kinds of tests: MRI, EKG, EEG, Neuropsychological, CT scans, x-rays, and the dreaded pathology reports.
Our lives hung on the news from those tests every three to six months, if we were lucky, every year.
It was a scary new world because you never could know what to expect.
The doctors all said, “Wait and see”.
It was all they could say. They didn’t know what the future would hold.
We learned to study statistics and pin all of our hopes on them.
Numbers and percentage signs, such powerful things in this world.
Prognosis was not a word in the vocabulary of NF doctors.
The doctors…
They were scarce and we had to search them out.
They weren’t always in our neighborhoods.
Often we traveled distances to find them.
They were specialists who we revered and respected.
There were Neurologists, Orthopods, Neuro Opthamologists, Radiologists, Anesthesiologists, Neuropsychologists, Oncologists, Cardiologists…
We hung on their every word in hopes that this time it would be good news.
We set up websites to share this news because telling the stories again and again became exhausting.
In this world we learned so many lessons.
We learned to look at our children in a different light.
We learned to cherish every moment even the impossible ones.
We learned to hug them and kiss them until they couldn’t stand it anymore.
We learned that they wouldn’t always be given the opportunities we used to take for granted.
We learned not to take anything for granted.
We learned how powerful a child’s smile could be.
And some of us learned how to say goodbye long before we were ready to.
Others learned how to console and many of us learned the power of prayer.
We learned to have faith because we couldn’t cope without God, an almighty power capable of such enormous things.
We learned to advocate, educate ourselves and others, raise money and awareness.
Our lives were changed forever.
But that wasn’t what we couldn’t handle.
Our children’s lives were altered to a degree of which we could not be certain.
Not knowing.
That was the part of this new world that consumed us with fear, got us on our knees to pray and that clung to every fiber of our being from the day we entered the world of NF to they day we leave it.
And when the cure is found, we can rest.
By Jesse's Mom

Little Brother

Here are the lyrics to the song "Little Brother" written by Ben, for his brother Drew. Drew has
schwannomatosis, the rarest form of NF. It speaks to the unrelenting pain Drew and others with schwannomatosis cope with every day.

Verse 1:
Little brother don't be afraid
this pain will be gone one day
little brother I'm by your side
I'll help you to endure this fight
you are so strong and yet you are so weak
you'll overcome determined to succeed

Chorus:
the birds still sing
the sky's still blue
you've got Somebody watching you
watching you

hold your head up
march right on
we'll be right here 'til the war's done
(the war's...)

Verse 2:
Little brother don't shed a tear
you've got the strength to persevere
little brother I pray for peace
and ask a cure for this disease
now lead them on the world is in your hands
they'll follow you now give them your commands

Chorus:
the birds still sing
the sky's still blue
you've got Somebody watching you
watching you

Hold your head up
march right on
we'll be right here 'til the war's done
(the war's...)