Wednesday, April 23, 2014

NF Clinic

We were totally prepared for a long day.  We packed a lunch and some snacks and headed out to Aurora for our yearly check-in with the genetics department at the Children's Hospital.

We are PROS when it comes to these appointments...We know that there will be A LOT of doctors and A LOT of questions.  I am so happy that I was able to get all 3 kids in - the same day!

Our morning got off to an early start with ALL 3 kiddos receiving eye exams.  These aren't your general, walk-in type exams....The doctors here specialize in early detection of Neurofibromatosis complications. Since about 40% of people with NF have tumors called Optic Gliomas, yearly exams are very important.

Out of my 3 NF children--One has an Optic Nerve tumor.

The exams took a couple hours, since we had to dilate --  

I noticed after we left the Eye Clinic that Braden's eyes showed something weird.  One pupil was large, the other had gone back to normal.  So I called the eye clinic and they told us to go back over, just to make sure everything was okay.....

And it was.  The DR told us that this COULD have something to do with Braden's Optic Glioma....The eyes returned to normal within a few hours.

After lunch, we headed to the genetics clinic.  It was a revolving door of doctors. 

During our time at the clinic- I got to meet the president of the Colorado Chapter of CTF.  She came into the room and shook my hand, telling me how excited she was to meet me.  This totally threw me off...But it was pretty awesome.

She knew all about 'Thriving with NF' and my book....And she asked me to come to some of the events that are coming up, to promote and sell my book.  This was a bit of a head-rush type of thing...And really made my day. :)

I also got to meet another family dealing with NF.  Life sure got put into perspective (again) when I saw their faces and met their young son.  It scares me to know that NF can be so unpredictable in how it affects people.  This family seemed so defeated.  

They were happy to have met me....But I left them feeling like I should have done more for them.  I don't want to come off as someone who is totally living life with no worries...Because -trust me, I HATE NF as much as anyone who is dealing with it....But I felt this feeling in my gut....That I need to be doing MORE!

I sit behind the comfort of my computer...And write.  I tell stories about our NF journey, that HOPEFULLY helps people feel less alone....And maybe - Just maybe helps to change someones attitude about how they act/respond.

I don't know...Maybe it's time to be more OUT THERE...Get in front of audiences and groups that want to hear about HOW I came to THRIVE with NF.

I've done radio, magazine interviews and have even done a keynote -- and I LIKE how that makes me feel...But I have never really considered myself a "Speaker"...(That's my hubby's job title)

Maybe it's time I change that about myself.


Wednesday, April 9, 2014

Bye-Bye Tonsils!

Bright and early at the Children's Hospital--Rachel gives a 'thumbs up' for the upcoming surgery...The night before, Bailey told her about how HORRIBLE having your tonsils out is....So, this smile means a LOT.  It shows Rachel being brave...And being positive!  Way To Go!

Pre-Op.  LOTS of waiting!  Thank goodness for the TV and CARTOONS!  We spent our time talking and being silly for some pictures.

Rachel had 5 different doctors come in, to evaluate her.  ALL of the doctors were familiar with Neurofibromatosis...And since Rachel has some "abnormal issues" going on in her throat...It was so reassuring to have ALL of our docs on the same page. 

Right before Rachel went off...We said a prayer....All of Rachel's nurses commented on how good she was being....And I have to agree....I'm so proud of her!

After surgery (which took about an hour and a half) I was told that Rachel had a "more than average" amount of bleeding, so our recovery would PROBABLY be a little longer....

Then Rachel began vomiting...and got a little fever....So we we told we would most likely stay the night....Poor Rachel was in so much pain.....

Our nurse put some anti-nausea meds into the IV and we waited....

THANKFULLY...the meds did the trick!  And on the way home (as promised) we stopped for Mcdonalds ice cream....

Rachel konked out on the couch and has been pretty much sleeping since we got home...

for the prayers and good thoughts!!

Friday, April 4, 2014

Why Am I Doing This?

I'm not going to name names....But a person close to my heart asked me a question the other day that got me to thinking....Actually....It got me MORE than thinking....It sort of ruffled my feathers a little bit.  Now if this person is reading this post...I mean no disrespect and I LOVE you tons...And maybe possibly, this was EXACTLY what I needed.

This person asked me "So...Why all of a sudden are you exercising and losing weight...Why the new obsession...?  I thought you looked fine the way you were."

This took me by surprise because:

1.  Nothing is "all of a sudden" about me trying to lose weight.  I have been struggling with my weight since Junior High...and have Yo-Yo'd around the scale since forever.

2.  If I were to continue on the path I WAS on....I'd either be dead....or seriously and dangerously obese.

3.  I may have "looked fine"...But I wasn't.  I was miserable.  I was tired.  I was just getting through the days and was extremely depressed.

So after the conversation with my friend....I got into my car and the song 'Girl on Fire' by Alicia Keys came on the radio....I found myself singing to it and feeling unbeatable.

All the WHY's of my journey surrounded me.

1.  My "new" Hobby--Obsession has helped me feel worthy.  I NEVER felt like I COULD feel good about myself.  The tumors/freckles/birthmarks all held me back...whispering lies like how it wouldn't matter if I lost weight...The tumors would always be there, reflecting back at me from the mirror chanting that I would ALWAYS -- NO MATER WHAT...Be ugly.


2.  I may have "looked okay"....But seriously....Excusable Fatness?  I'm sorry....NO WAY.  I'm no fitness expert....But there is no planet in our universe that would say it was okay for my 5'1" frame to carry over 240 pounds.

The wall I was facing - Being that 240 pound woman was CRAZY.  And it scared the crap out of me.  But I'm doing it.  I've DONE IT!  Day-By-Day.

3.  I am in no way the most confident person in the world.  Heck I can barely carry on a conversation with someone....BUT...What I feel INSIDE...WOW.  It's a type of rush that can only be understood by people who have done it.

4.  FAT is no longer my best friend.  Seriously.  I counted on my fat for everything.  Now....It's up to my MIND..MY SPIRIT...and MY HEART...and I have to say, it's a MUCH better relationship!

5.  Once I got rid of the excuses was when my journey REALLY took off.  When results began - I knew I had to go all the way.  The only thing keeping me from being better...Was ME.

Knowing I can keep up in a kickboxing class...or Run 3 miles in a half hour pushes me forward and helps me never want to look back.

WHY am I doing this?



Tuesday, April 1, 2014

Autism Awareness Month

An AMAZING selfie of my daughter

The rainbow of Autism.  What does it mean?  A wonderful metaphor describing a broad community of unique and challenging individuals.

3 of my 6 children fall under this rainbow....All beautifully and exceptionally created ....In a complicated twist of mind boggling colors.

Bailey has Asperger's -- She's magically cooky, but also quietly reserved.  She finds comfort in being alone....But then, enjoys the company of the few friends that she has made.  Communication is at its best...when nothing is said.
She has a hard time reading people...So if you roll your eyes, or give her a pursed lip glare...She will have no idea what that means.
Her confidence in herself is low...And she is the last to raise her hand and participate in social activities....Sometimes...people think of this as being rude...or uninterested...But that's just the way Bailey works.

Teachers have called her "lazy"... "Inattentive" ...

Bailey is "socially awkward"....And doesn't quite fit in with people her own age....She can be really silly one moment....Then withdrawn/depressed the next.   But she has a heart of gold.  She is loyal and trustworthy...And has grown into such a beautiful woman....She has changed my life.

Braden also has Asperger's.  He will never look you straight in the eye...So sometimes, it's really hard to have a conversation with him....But if you get him on the topic of video games....He can talk forever!

Braden has very few friends...The ones he DOES have, are a lot like him.

Braden's learning disability - along with Asperger's has him functioning as a 7/8 year old and has been a hard thing for most of the people in Braden's life to understand.  They see a 16 year old young man and expect 16 year old work out of him....This has been a ongoing battle we fight...Especially in regards to school.

If you take the time to get to know Braden...You will find a kindhearted guy, who is the happiest when he is allowed time on his video games.  He has helped me learn to have patience and has given me a new appreciation for taking life slow...and just enjoying each day as it comes.

Rachel.  My little spit-fire!  Rachel is one complicated little bundle of crazy energy.  She was born quietly...never crying....Until we brought her home from the hospital...Then it was non-stop.  

It took us FOREVER to get a diagnosis...And even today...We are trying to figure things out.

Rachel has Sensory Integration Disorder--Which has a RAINBOW of complications as well.  

Wildly diverse...Rachel can display every color of the SID rainbow....She is fiercely unpredictable and sometimes she is completely "normal".

She falls under the "rainbow of autism" because we aren't quite sure of where exactly to put her.

She fits in the box of Autism...But then...Some days...She doesn't.

Life with Rachel is unpredictable and takes you on an emotional roller coaster.

Noise.  Light. Smells.  Touch.  Anything can set her off...And I find myself always wondering -- and watching how I interact with her....

Her temper is short.  But at the same time...She can be wonderfully affectionate.  A "go-getter"...Who is the life of the party....Eager and excited at school....Friendly and silly. 

She has pushed me to my limits....Then she reels me back in, with her sweet smile, and loving spirit.

Tuesday, March 18, 2014

Doctor Doctor - Give Me The News

I know most people can't say that they are excited to see the doctor...But I was.  I was SO excited in fact, that I had a completely different blog post already written, in anticipation for this visit.   Let's just say...this visit...didn't go as planned.


Well aside from being sick with a cough for 3 weeks and needing refills on my prescriptions, I wanted to be able to "OFFICIALLY WEIGH-IN" on a medical scale...And possibly have the chance to brag a little about how much weight I have lost. 

I didn't want high-fives...or a parade ... BUT I DID want something other than what I got.

"Hmmm You're overweight" The DR says as she walks in the room....(no --'hi... how are you?')  "Are you watching your saturated fats...?"


My heart sank.

"Have YOU looked at your charts Doc.?  What is the last weight you have?"

She tells me 203.

Then tells me that according to the "Ideal Weight/Height Chart" I was still considered "overweight"...and that "I had a ways to go".....

COMPLETELY missing the fact that I was 80 pounds lighter than the last time I was seen.

I'm sorry....But my balloon was deflated!

I know it's not the doctors job to make me feel better about myself....

Wait.  YES IT IS!  That's what we PAY them for!

I couldn't believe it.  I was crushed....Hurt....and feeling like ALL THAT HARD WORK I WAS DOING DIDN'T MATTER.

(I know it DOES matter...But the doctor got me to a place I never wanted to be)

Who IS SHE anyway?  Why did I allow HER negativity to affect me so much?

It's 'cause I am obviously still working on myself.

I have lost a total of 118 pounds (according to the highest recorded weight) and even though it has taken 2 years of REALLY hard work....My insides have a LOT of catching up to do.

If I went by "ideal weight"...I'd be 105 pounds...Yeah...In an IDEAL WORLD, where I'm not almost 40 years old....Had SIX babies...and had perfect genetic background.

Charts--Graphs--And Ignorant Doctors can bite me.

 Negativity has NO PLACE in this new body.