Wednesday, October 27, 2010
Monday, October 25, 2010
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.
Friday, October 22, 2010
Thursday, October 21, 2010
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.
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.
Wednesday, October 20, 2010
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.
Monday, October 18, 2010
Wednesday, October 13, 2010
Monday, October 11, 2010
Friday, October 8, 2010
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.
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!
Wednesday, October 6, 2010
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:
Personal Stories from a variety of contributors
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 (firstname.lastname@example.org)
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.
Monday, October 4, 2010
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:
*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?