A Time For Change

 I love Fall. The colors, the smells, and MMMMMM the tastes! Fall is filled with changes. The old shedding, so that new can grow. 

Before my diagnosis with Neurofibromatosis, I existed in a life of survival.  I couldn't grasp the meaning of hope or Thriving.  

I have been to the deep, dark, airless places of adversity that have sapped every ounce of energy and hope from me.  Times when survival is my only option.

But what happens after survival?  How do we change and turn the attention to theThriving end of the balance?  How do we find hope, in a seemingly hopeless situation?

We all live our busy lives.  Filled with "go here", "do this" ....I know for me, when life seems to be going smoothly, it's easy to Thrive, to find hope.  But it doesn't always take much to throw me off this path.

News of a new brain tumor earlier this year filled me with despair for my 14 year old daughter.  Wondering what life will hold for her future.  Revelations from the Ophthalmologist that my 7 year old daughters vision is getting worse and to prepare for her to have major loss by the time she is 20.

It's so easy for hope to be smashed, dreams to be crushed....and for THRIVING to go right our the window.

The thing I try to remember is that I am much bigger, than anything or any struggle that comes into my life.  I am much more than just an endurer of problems. 

I had to be willing to open myself to a change.  Be willing to accept, that I didn't have to control everything in my life....and trying to control, would only find me getting further and further from where I wanted to be.

What a concept!  Letting go actually gave me more control? Absolutely! Accepting what is, does not mean that I have given up control to do something about it, just given up wasting energy on anger over its existence.  In fact, doing this has given me the opportunity to do the opposite, and gain control over how its existence will be tolerated.

It's easier for me to learn, teach and give back, now that I have chosen to embrace and accept what is happening in my life.  Opening myself up to change, helps me so much in being who I have always wanted to be.

I had to shed the old Kristi, to become the NEW Kristi. It's not easy, but we can endure the losses like the falling leaves of Autumn, we brace ourselves through the icy cold of Winter, because we know the warm, green-tinted life of Spring will come - and we will again be able to Thrive.

Thrive On!

Fear- Thriving with Neurofibromatosis

When I was officially diagnosed with Neurofibromatosis in 2007 the world became a very dark and scary place.

Fear lives in the darkness, because the darkness hides our next steps from us, and demands that we move forward without security - are we moving on safe ground, tripping over a large tree root, or falling into a bottomless quicksand? It can lead us to simply stand there alone - without friends, without hope for ever seeing the light.

How do we escape? By calling out to each other - following the voices of one another back into the light of support, awareness, and education. By being willing to be heard, and hear others.

Fear cannot survive the light. The more information we expose ourselves too, about our conditions, about our options, about our next moves, the brighter our world becomes. For me, this is at the heart of Thriving. The more I reach out, the more of you I meet and interact with, the more encouraged I get. The more information I find and share, the more of you I hope to share my light with.

When we put all of our lights together, fear will have nowhere left to live. That's a world I can't wait to see.

Thrive on.

Don't Worry, Be Happy!

Sensory Processing Disorder

Even when Rachel was a newborn, I knew there was something different about her. She came out of me, totally silent. She looked around the room taking everything in.

The Nurse to get her to cry by rubbing and flicking her feet, s triedbut she just laid there.

When I brought Rachel home from the hospital, she never left my side. When she did, she erupted in uncontrollable crying.

I mentioned to Rachel's doctors at every visit that she was a very "clingy" baby and was only content when I would hold her and nurse her.

It was suggested by the doctor that we get Rachel a "binky", so she could learn to sooth herself, and give me a little break. She became very attached to the binky, not giving it up until she was 3 yrs old.

The binky did help, but as Rachel began crawling then eventually walking, the "fussiness" became more like tantrums. Rachel didn't walk on her own until she was almost 2 yrs old, the "fits" she had, I admit had her in my arms for most of the first 2 yrs of her life.

While I knew it wasn't helping Rachel to be constantly holding her...It seemed the only way, to have a relaxed baby. The whole "let her cry it out" thing, just wasn't something I was about to do with her.

As Rachel grew into a toddler and preschool age the attachment to me got less and less. She would go off on her own to play, but as soon as someone other than me, got into her space, she would scream and cry.

Smells and loud noises also triggered Rachel to throw tantrums. She would gag with smells and cover her ears with noises like cars or the tv. She didn't like tags or "scratchy" clothing. All of the doctors reassured me that we just had a sensitive child, and just needed to be patient...she would surely outgrow this.

A recent round of tests, prompted by Rachel's constant complaints of leg pain, led into a direction, where all of the lights just seemed to go on. Xrays of Rachel's leg showed bowing and "inflammation". Neurospych evaluations began to show a bi-polar/ADHD/ sensory issues.

Fitting the puzzle pieces together, finally gave us a diagnoses of Sensory Integration Disorder. It explained so much of what we were experiencing with Rachel. While I was happy to have the diagnoses I still refuse to slap a label on her. While labels can help us understand the problem, they can also limited the possibilities of a solution.

Check out this list for signs for SID. If you feel your child fits this diagnoses, please notify your child's doctor. This blog is NOT meant to give a diagnoses...just information.

Thriving with Neurofibromatosis....or whatever!

With so much going on with our family medically, it's very easy to get overwhelmed. The challenging things that the entire family faces is difficult to manage. I have found that oftentimes I just want to run and hide from these things.

Yet having an optimistic attitude and emitting positive energy is required in order to attract and create better life circumstances. I believe in the power of attraction. I believe in how you think having a 100% affect in the outcome.

I wasn't always like this though. Frankly, I might be the least likely person in the world to believe in any of this positive attitude stuff.

My dad used to force feed me 'Positive Thinking' books - 
I still remember him giving me the book "The Be Happy Attitudes" by Robert Schuller. I looked at it, read a little of it, and starting thinking, all right. I was thinking, "Gee, if this stuff works, why is my Dad the way he is? Why didn't my parents stay together? Why aren't we rich? It's easy for this guy to have a positive attitude - he's RICH! If I were rich I'd have a positive attitude too. Sheesh!"

Years later, my husband started getting into Anthony Robbins, and tried to get me on board with the ideas in "Awaken the Giant". Great... the guy with big teeth. What a farce. Another rich guy telling us how to live. It certainly wasn't going to help us. For years Rich has tried to get me on board with 'positive thinking', and for years, I resisted.

It wasn't until I realized my attitude about NF was paralleling my mother's attitude that I began to transform....that I began to choose to Thrive. Notice I didn't say 'began to Thrive', I said 'began to CHOOSE to Thrive'. That's what it is - a choice. Every morning, every minute. Through every roadblock. Through every victory. Through every ordinary NF filled day.
Here's the deal - I could see that having a negative attitude was working. Life sucked. I was depressed. Life seemed to get worse every day. If negative thinking works, why not positive thinking? Negative attitudes lead to negative actions. Positive attitudes should then, by definition, lead to positive action. Negative action leads to negative results. So positive action should lead to...you got it...positive results.

I still struggle a bit with being positive. Even changing my language - instead of struggle, I should say strive to have a positive attitude. It's a minute by minute thing. I'm working through a program now called "The Secret Abundance Files" - something I never would have imagined doing in the past.

Changing the way you think is the key to changing the way you live. It is as hard or as easy as you choose to make it. You can choose to hide from the daily medical issues, from your attitude, even from the guy with the big teeth. But troubles will always find you. Instead of hiding, consider striving for a new outlook, a new attitude - take new actions and experience new results.
The choice is YOURS.
Thrive On!

                          The above is an affiliate link

Leg Bowing in Neurofibromatosis

Rachel has been in physical therapy since she was in pre-school. The teachers noted that Rachel was not keeping up with her peers and having trouble with large motor skills.

The "wait and watch" approach was the best option, since Rachel did not appear to have anything physical going on.

Recently pain has caused us to undergo further testing. Rachel will fall down crying, grabbing her legs, refusing to walk. This was scary, not only for HER, but for us as well.

The blood results came back within normal range, but the xrays that were taken did show that Rachel has anterolateral bowing or pseudoarthrosis of tibia. While relatively mild, we were happy that we had an answer to why Rachel has been in pain.

Where we go from here, I am not sure...More "wait and watch" I am sure.

The unknown can be scary, but if we hide and avoid the potential issues we are also hiding from the possible solutions.

Thrive On!

Health Care in America

Having Neurofibromatosis isn't easy. It's even worse when you have serious issues that require monitoring, but have no health insurance.

USNEWS.COM estimates that somewhere between 40-46 MILLION Americans have no health insurance. This is either because they cannot afford health insurance, do not qualify for it, or both.1 in every 6 people in the most abundant and blessed nation in the world!

I am one of those people who has to visit the "free" clinic in order to get health care and medication. There's nothing wrong with these clinics, but what does one do when something more than general care comes up? I require yearly MRI's to monitor my hydrocephalus and brain tumor, both directly related to Neurofibromatosis, but I continue to go without complete health care due to the GINORMOUS cost involved. My untreated headaches, vision loss, tumor growth...It's all very overwhelming.

I can hear the Canadians already - "Move up here! Free insurance!" But the trade-offs there are hidden not far under the skin, in terms of taxes, wait times, and the possibility of having to learn French, depending on what part of Canada I'm in :)

"Oh, but Obamacare is coming!" What does that mean, exactly? Isn't it here already? Can anyone tell me how to access it? Will he even be president long enough for it to become reality? Will the next government overturn the program?

But focusing on all the issues related to NF and no health insurance quickly pushes me in the direction I don't want go. Its too easy to let these fears and concerns beat me down. To worry about the tumor in my head instead of focusing on the drawings Brooklyn lovingly provides me. To fear the worst from NF when I could very well get hit by a car tomorrow. I won't sit back and do NOTHING in regards to my personal healthcare crisis, but I won't let it stop me from Thriving, either.

Whether it's the free clinic, volunteering for research, or paying, yes actually paying for the services I need in the coming months, I won't go without. Worrying will accomplish nothing, but faith? Faith conquers all.

Thrive On!

Kristi

Dyslexia

I was 7 yrs old when I first realized I wasn't like my peers, from an education standpoint. My 2nd grade teacher made everyone get up in front of the classroom to read a report on our favorite president.

When it was my turn to read my report, I smiled my toothless grin and spit in my hand to slick my cowlick down and straightened my dress; that wasn't quite long enough to cover my scraped up knees.

"A-hem" I coughed to get the attention focused onto me. I remember looking up at everyone looking back at me. My chubby knees knocking together as I began to read my report on President Reagan.

"President Reagan is my favorite President, 'cuz he likes jelly beans!" I heard everyone giggle, I giggled to when I saw my teacher put her head in her hands.

The report took me forever to read...I looked down at my scribbly handwriting and the letters and words looked all mixed up.

The kids in my class were getting really restless, and I was becoming more and more frustrated...not understanding why I couldn't read the letters and words on my paper. "R's" looked like "H's" and the words were jumping all over the place.

My teacher eventually got tired of what she called "Silly nonsense" and sent me back to my seat. "You can do a PROPER report this weekend Kristi!"

My report WAS really good...I mean who could beat a president who LOVES jelly beans just like I did?

It took me until I was in high school to be FINALLY diagnosed with dyslexia....But by that time, I had gotten by with little tricks I would use to get myself out of reading aloud...(forgetting my glasses, sore throat, etc)

But as an adult with Dyslexia, I find myself feeling really "clumsy" when I read, or if I am writing things down....It's kinda tough to make sure I double check addresses, recipes, phone numbers...because it's really easy to transpose numbers.

Just one of the fun things in life!

An NIH study estimate that 15 % of Americans are dyslexic.....but as my story goes, some people may go undiagnosed.

Here are some things to watch for...For your child, or maybe even yourself:

How do I know if my child has dyslexia?
If your child has had difficulty learning to read words and spell, she might have dyslexia. Young children with dyslexia typically have difficulty learning the alphabet, rhyming, and dividing words into their sounds. Many parents of students with dyslexia describe their children as bright and eager learners until they encounter instruction in reading. At such time, they often become frustrated and despondent. Sometimes these children are able to memorize enough words to appear as if they are reading. When the number of words they must memorize becomes overwhelming (about third grade), the difficulty with reading becomes apparent. Simply stated, if your child has unusual difficulty pronouncing the words when he/she reads and spelling the words he/she writes (compared to others of the same age), you should consider an assessment for dyslexia.

How can I have my child assessed for dyslexia?
If you think your child may be dyslexic, contact your school principal and explain your concern. Under the Individuals with Disabilities Education Act (IDEA Reauthorization 1997) and Public Law 94-142, the Education for all Handicapped Children Act of 1978, you are entitled to have your child evaluated by the school. Generally, schools provide a basic evaluation, but they do not always make a differential diagnosis for dyslexia. Should you wish to pursue the diagnosis privately, you should seek a qualified evaluator. If you decide to use a private evaluator, ask if this individual is familiar with diagnosing dyslexia and which areas she will be testing. A diagnosis of dyslexia can be made after these areas have been assessed: general ability, word recognition, word attack (sounding out words), spelling, reading comprehension, and written expression. In addition, a comprehensive evaluation will include assessment of oral language skills which affect learning to read and write. In Tennessee, contact the Center for the Study and Treatment of Dyslexia for information on testing your child.

Can a person be dyslexic and have an attention deficit disorder (ADD)?
Yes. Recent research indicates that about 30% of individuals with dyslexia also have an attention deficit disorder (ADD).

Do people with dyslexia see words backwards?
There is some evidence that visual dyslexia affects some people. These people have great difficulty establishing left-to-right order for many confusable letters (b/d) and words (was/saw). Very few may actually be able to read books in the upside-down orientation more efficiently than in the typical orientation. However, most people with visual dyslexia have difficulty coming up with the pronunciation of words wherein clusters of letters are used to spell one sound -- words such as sight, road, slide -- or words containing pairings of letters that might spell different sounds in different words -- words such as limb/climb, eight/ate, through/though/tough, believe/receive. Recently, people with such difficulties have been described as orthographic dyslexics.

What causes dyslexia?
Dyslexia is a consequence of the way a person's brain is organized. Learning to read requires making the association between printed symbols and spoken words and spoken sounds. These associations must become firmly fixed in memory for reading to be fluent. People with dyslexia have great difficulty establishing these associations. The exact cause of the difference in the brain is not known, but recent research and new technology make it possible to identify some of the differences in the brains of people with dyslexia. Also, interviews suggest that dyslexia appears in families across generations. Currently, the search for the possible genetic basis of dyslexia is underway in various locations around the world.

http://dyslexia.mtsu.edu/about/faq.html

There may or may not be a link between NF and Dyslexia. Regardless, the keys to dealing with both are similar - discover it, accept it, educate yourself about it, and take steps to Thrive despite it.

Thrive On!

Neurofibromatosis: On the next episode of COPS!

I was minding my own business. I was going the speed limit and had my seat belt fastened. So, when I saw the flashing lights in my rear view mirror....I PANICKED.

My heart was racing....You all know what I'm talking about, when that dreaded police car gets behind you. I kept checking my mirrors, turned the radio down, and quieted Brooklyn who was chanting "Mommy's in trouble, Mommy's in trouble.

I signalled and pulled to the side of the road. I took a deep breath as I rolled the window down.

The smiling officer confused me. "How are you...Don't worry, you are not in trouble", he said looking over his sunglasses. "I wanted to ask you about the painting on your window."

He went on to tell me about his 4 yr old son being diagnosed and how confused and upset him and his wife were. We talked for a few minutes and I gave him my email address, facebook info and website address.

The feelings I had when I drove off were overwhelming. You never know when the chance to impact someone will come your way - how ready are YOU to talk about NF? You don't have to have a website, you don't need to be a professional speaker, all you need is an attitude of awareness. When you Thrive, we all Thrive.

Have an AWESOME weekend!

Thriving with NF Newsletter!

One of my biggest passions is about raising Neurofibromatosis awareness. Being a 36 yr old woman fighting this disorder, I am doing every I can to make this happen. I have 3 children who have also been diagnosed with NF and I feel that any information that is based on THRIVING will help many people overcome (or at least help deal) with all of the issues that NF brings with it.

I am excited to announce that thanks to my husbands help, the THRIVING with NF Newsletter is here!

I want to get some feedback from my readers with what they would like to see in this newsletter.

Some ideas I have already are:

Volunteer Opportunies
Research Information
Personal Stories from a variety of contributors
Medical Stories
NF1, NF2 and Schwannomatosis info
Brain tumor news
Optismistic Optic News

All of my information will be positive and 'Thriving' in nature! Please make sure to sign up, by going to www.thrivingwithnf.com


Reply to this blog with ideas of your own...and If you would like to contribute to my newsletter.

Thanks so much for all the support!

Questions? Suggestions? Email me (kristi.hopkins@gmail.com)

It's All About Hope

It's two days after Braden's 13th birthday - and my head is filled with thoughts about his future. Who will he marry? What will he choose as his career? Will he ever learn to clean his room? But 13 years ago today, my thoughts were very different. Will he ever be able to come home with me? Will I ever hear his first word? Will I ever see his bright eyes look into mine again?
Two days after Braden was born his doctor told me that I needed to prepare myself to lose him. He felt that there was not much hope for my newborn baby boy.
It was true, he was very sick. He was born 6 weeks early and had trouble immediately after he came out of me. But when I looked at this 7 pound 1 ounce baby...All I saw was a beautiful boy, who I knew was going to be okay. To me Braden was perfect.
While this doctor was trying to prepare me for the worst, he also knocked any hope I had that he was going to overcome the battle that lay before him. I wasn't ignorant of the fact Braden was struggling....The tubes and ventilator were hard to miss. But what I felt when I saw him and touched his tiny fingers and toes - never filled me with fear.
Braden spent two weeks in the NICU, and obviously did overcome his battle of prematurity. I refused to listen to the doctor, and chose to stand on my own hope for my son. What was my alternative?
Sometimes the medical profession gets lost in its text book terms and doctors forget that they are working with actual people, not just statistics. I have met a handful of doctors who have taken the time to get to know me and my family....and it's THESE doctors who make a real difference.
But it's also our responsibility, as patients, to make a difference for the doctors. To remind them we are human, that we are intellligent, and we do care about our own condition and how its affecting our lives and the lives of our children. To remind them that a Higher Power is in control, and that each patient is a human being, not a diagnosis.


It's our responsibility to stay informed, to question our doctors, and offer respectful yet directed feedback to them, to help them help us, and to help them be better doctors for all of their parents.


It's all a part of Thriving with NF.

Thrive On!

Neurofibromatosis Symposium-Denver Colorado

Bailey at the 2010 NF Symposium

It didn't take much for me to accept the invitation to attend the Neurofibromatosis Symposium that was held here in Colorado, at the Children's Hospital in Aurora. After the one in Spokane a year ago, I had high hopes this one would be much better.

<2009 NF Symposium>

Walking in to the Symposium, I re-imagined myself as someone who knew nothing about Neurofibromatosis. I wanted to hear what the speakers had to say with a fresh and open perspective.

The first speaker, Dr. Tena Rosser discussed tumors; specifically Plexiform Neurofibromas. She was interesting and her pictures added concrete reality to the topic. While none of my family members suffer from plexiforms, I found the topic to be informative, but a bit overwhelming.


The topic that got my attention was about learning challenges and social skills in NF children. I took notes and paid close attention, seeing that I have 3 NF1 kids, who have very different learning challenges.

Dr. Jennifer Janusz is a children's Neuropsychologist, who has specific knowledge of children with NF. Her topic pointed out that MOST kids with NF do not have one specific type of learning challenge but may have a broad scope of disorders, what she called a global deficit.

With my own NF1 children, all three have IEP's (Individual Education Plan). While all of my NF1 children do have ADD/ADHD in common, their learning plans are quite different.



People with NF seem to have "Global Deficits" and do not fit into a specific learning disability profile....which explains why Bailey had gone so long without qualifying for an IEP at school. It wasn't until she had gone through Neuropsychotherapy, that she would finally qualify for extra help.

To parents with NF children...it is extremely important to have your child tested by a Neuropsychotherapist...either before they start school, or soon after. These doctors are trained to pinpoint your child's specific strengths and weaknesses.


Some things that help children who are struggling in school:

*Increase Structure

*Breaking long-term projects into sub tasks

*Verbalizing your Plans

*Goals (step by step...instead on a long term goal, make small attainable ones)

*Create planning sheets, or check off sheets for daily tasks

These these have helped with my kids, especially with Braden. He has trouble completing a list of goals, so instead, we break it down to 1 or 2 small ones. He feel accomplishment and pride with this process.
-----
We had a break and I checked on Bailey, who slipped out of the conference after the plexiform discussion. She was in the room next door, playing with other children. She seemed to be having a good time and even connected with Dexter, the son of a woman I am friends with on Facebook.

I filled my cup up with orange juice and sat down to get ready for the next speaker. I looked at the schedule and saw the topic was on eye care. This topic also interested me, mostly because of my soon to be eight-year-old daughter Rachel.


Rachel has had issues with her eyes for the last 3 years. Her first MRI was performed in 2008 and we learned that she had narrowing of the optic pathways, under developed ventricles and a brain mass.

Dr. Mithra Gonzalez recommended every child with Neurofibromatosis be followed by an opthamologist as well as an optometrist. The importance of this is because opthamologists are specifically trained to watch for abnormalities of the eyes during medical school, whereas the requirements to be an optometrist are not as comprehensive.

Dr. Gonzalez, while amazingly knowledgeable, used far too much medical jargon for my tastes. Personally, I found myself having a hard time following him and lost my focus. His clinical style didn't lend itself to creating much hope for the audience and the mood in the room afterwards was somewhat depressing. I know many families who are dealing with specific eye issues, and the last thing they need to hear was that there was no hope in saving their child's vision.

Dealing with NF is a two-sided challenge. We want the truth, but I believe we also need encouragement. Doctors often lose themselves in the information, which can blind them to the humanity the information affects. I was glad for this talk to be over, and I won't let the medical truths get me down.

The last thing on the schedule was to hear from the adult panel. Four people sat in front of the room and voiced their stories about being diagnosed with, and living with, Neurofibromatosis. As each of them talked about how they do not let NF limit them - Teachers, College Graduates, Mentors - I smiled. THIS is what the NF community needs to see. People Living and Thriving with Neurofibromatosis. This is what I strive to show my children, my readers, MYSELF, everyday.

What are YOU showing the world?

Thrive on.