Sunday, December 7, 2014

THRIVE ON!


I met with a good friend recently.  We talked, like we always do.  She is a very spiritual woman, who is strong in her faith...And I always go away from our meetings feeling very uplifted.  She has this way about her...That always seems to encourage me.

And...Although sometimes I don't feel like it...She tells me that I also encourage her.  It's amazing the impact that SOMETHING...or SOMEONE can make...without really intending to.

When I began this blog 7 yrs ago....It's intention was to put myself out there...Tell MY story, so that somewhere...Somebody would feel less alone.  I wanted to Inspire...Uplift...And Encourage those living with Neurofibromatosis...And help them see that a THRIVING LIFE was possible!

A few years ago, I began to end my blog posts with "THRIVE ON!".....Which has been echoed back to me several times, which really makes me feel GREAT!

So GREAT, in fact that it has been the staple of how I live my life!

I want to share with you a way that YOU TOO...can show what a THRIVING LIFE looks like!  A way to LIVE PROUD...And shout to the world that YOU ARE AN OVER-COMER!  A person who doesn't let life's obstacles hold them back!!



Cancer?  Brain Tumors?  Neurofibromatosis?  THRIVE ON means that you go beyond JUST DEALING WITH IT!  You FACE IT!  YOU EMBRACE IT!  And you THRIVE with IT!

Get your T-shirt now by clicking on the shirt of your choice....Join ME as with THRIVE THROUGH LIFE!

THRIVE ON!

Friday, December 5, 2014

Holy Christmas Lights Batman!


What's Christmas without Christmas lights...?

I love decorating for the holidays....Christmas especially.  But I have never gotten up on the roof to put up lights.  For one...I HATE heights and had imagined myself tumbling off the roof, clinging to the gutters screaming for anyone to come help me!

I also had a fear of being that lady who can make it ON the roof...But the only way down was calling the Fire Dpt.

Well- neither happened....And THIS year, our house has LIGHTS~ AND a giant wreath made out of an old hula-hoop!


FEAR- It has stopped me from doing so many things.  I'm not sure why fear has all this power...When the JOY I get from doing something I feared has SO MUCH MORE power!?  It's like this lesson - that needs to be taught over and over and over...and I STILL don't trust in it.

The FEAR wins, almost every time.  

I'm still willing to learn though...So that's good...right?

Have you done something you feared? How did it make you feel? Do you let fear stop you from going towards something that could bring you joy?

This Christmas Season I hope that it does nothing but fill you with love and joy!

THRIVE ON!

Wednesday, November 26, 2014

Happy Thanksgiving!




I've been "hosting" Thanksgiving dinner at my house for years.  My exuberant crowd usually gives me a "thumbs up" with everything except ...SCRATCH that...The turkey is pretty much the only thing they eat, with the exception of my hubby (of course) and a few others who get BRAVE enough to try a "thank you" bite of mashed potatoes.

So, anyways....My hubby and I were grocery shopping and got to the TURKEYS.  *gobble gobble*

What the heck.....This one is almost 40 dollars....While THAT one (which is HEAVIER) is 17.

Hmmm  - I have ALWAYS cooked the cheaper turkey...and they have ALWAYS been yummy....I started wondering if the more expensive turkeys were raised by Daddy Warbucks....While the cheaper ones got kicked around in some turkey orphanage.

I LOVE Thanksgiving.  The business in the kitchen....The excitement to taste all the amazing flavors...The togetherness....And most especially...The fact my Christmas tree goes up!

I am NOT a Pinterest-worthy cook.  In fact, I feel like people spend WAY too much time on their turkeys in general.  My turkey gets coated in olive oil....butter....salt...and that's IT. ...I have tasted turkeys that people spent HOURS preparing with spices, lemons, leaves....And....I felt like spitting the stuff out in my napkin! (sorry to whoever reads this who takes offence...But when it comes to turkey, in my opinion....the simpler....the better)

I LOVE traditional....I don't ever try to live up to some Pinterest-type life....Because I know it's impractical...And it's just not who I am.  And even if I tried....My turkey would probably end up looking like this...



This Thanksgiving I am focusing on what is REALLY important.  If my "cheap" turkey tastes like a cheap turkey, so what.?  If all my kids eat JUST ONE bite of potatoes, doesn't matter.

Look around you.  See all those blessings?  They are there....even if you have to search for them.

Happy Thanksgiving!
THRIVE ON!!

Tuesday, November 11, 2014

Holiday Craziness!



I usually go missing in action this time of year.  The craziness seems to keep me running from one thing to the next...So today, I wanted to slow things down a little and catch up.

My Holiday CRAZINESS begins in September.  While school has already started, September is filled with Birthdays!  And the Birthdays don't stop, until after we ring in a new year.



September 18th...Both Brooklyn and Riley turned another year older.  I swear, when I look back at all the parties ...It just seems to have swept by and gone WAY too fast!



Then....I turned 40.  Yeah Yeah...I even dedicated a whole blog post to how I feel about that...But, it's not as hard as I thought it would be to be 40.  I kinda like it....Now, I can act mature and feel normal doing it....Or I can be silly and be one of THOSE moms...

Early October, Braden turned 17!   SEVENTEEN!!!  I can hardly believe it!  These kids are becoming grown ups, right before my eyes!  Having THREE teenagers in my house is a daily adventure....I am so proud of all of my kids!


THEN....we had Halloween....Which seems like was celebrated the ENTIRE month of October.  I love EVERYTHING about October...Especially raking and playing in the leaves....Which became tradition the very moment I became a mommy.
















And now...We're into November...Thanksgiving and another Birthday....Then December...With ANOTHER Birthday and of course Christmas...

In the meantime...We had another STABLE MRI for Braden, which sets our mind at ease a little...And we can put our focus where it should be...

That's an update from my little corner of the world...I hope that my family and friends who read this blog learn to take the Holiday Craziness one day at a time...and enjoy those moments when you can relax and reflect on the blessings that surround you.

Thrive On!

Monday, November 3, 2014

Transitioning From Pediatric to Adult Care




Time truly does fly by!  I honestly have a hard time believing that I am a mother to someone who is getting ready to turn 19 years old!

Recently, I have been obsessed with going through old pictures...Baby pictures.  Toddler pictures.  And as I sift through the years of memories....Laughing...Crying....And feeling all these emotions of pride and overwhelming joy....I begin to wonder how ready is my "baby" to be a part of the REAL WORLD?

Can she advocate for herself....?  Set up appointments?  Follow through with doctors recommendations?  Know what questions to ask?  Will she be like me and bring a notebook, to write what was being talked about at appointments...?  Have I led a good enough example, for her to start taking over...?

Transitioning from the Children's Hospital...Where we have gotten OUTSTANDING care can be a little scary.  But hopefully OUR experience can put your mind at ease....And make the steps a little easier for you!

First, just because your child is 18....Does NOT mean they get the boot from the Children's Hospital or Pediatric Clinic that you have been using.  Typically, these services will see a child until they turn 21....Sometimes longer.

But there are cases, where it may be time to move on before the 21st Birthday...And that's what we are experiencing now, with Bailey.

With things being "stable" in regards to tumors and back issues, we as family feel, now is the time to set Bailey up with 'Adult Care'...Since these will be the services used for the rest of her life.

Typically, transitioning is pretty easy....You just get your CURRENT Pediatric provider to refer you to a Adult Provider, or 'Family' Provider....And that's that.  But....Sometimes, like with our situation, finding an Adult Provider who is familiar with the massive amount of complications, caused by a relatively unknown medical condition, has proven to be a little tricky.

So....This is where the 'dirty work' begins!


It's really not DIRTY work....It's more like accessing information...And asking LOTS of questions! Networking...Talking to people...And using resourcing like Facebook has been truly amazing for us!

Odds are...That there is a support group out there for whatever health concern your family is dealing with...and if you search hard enough....There is most likely a support group for the health concern...IN-YOU-AREA!  It may take some time....And you may have to reach out, beyond your comfort zone...But the information is there!  You just need to access it!

Meeting new doctors can be overwhelming...I have met a few doctors...Who seriously should NOT be doctors, based on their bedside manners..and lack of empathy...And even MORE doctors who I FELT like I WAS the ONE who should have the degree hanging on the wall!

It's kind of like trying on shoes...Or buying a new care.  Sometimes....You need to "try-on" a few doctors to see if they will work for you.  Test drive them...Seriously.  There is nothing wrong with moving on to the next doctor, if you fee uncomfortable -- In fact, in the end, it's all about YOU anyway...and you DON'T want to be stuck with a doctor that you don't feel completely comfortable with.

Start with your insurance ... They have agents working that are trained to help...It's really as simple as picking up the phone and asking a few questions.  This will at least give you a starting point.  

Then reach out to support groups on-line...Or maybe even start your own.

I know that in our case, Bailey will still need me to be there with her....Advocating for her (plus she doesn't drive)  But I am slowly allowing her to start making decisions on her own...She is "co-manager" and hopefully will someday be able to take over.

This transition won't happen overnight - So we are slowly, gradually beginning the process now, to help Bailey become more responsible for her healthcare needs. 

Things that are important to start teaching your teenager NOW
  • Have THEM ask the questions.  Prepare ahead of time some of the things that may come up...Then have your child take the wheel.....Help them (of course) if they need it...But learning how to interact with doctors is one of the most important skill to have.
Does your child understand their medical condition?  In our family, honesty has been very important.  Bailey was asked to step out of the room, when we got our brain tumor news....But we said "No" to that.  She has been included in ALL aspects of her health care...and she knows what is going on.
Knowing about the condition, is the only way for your child to start helping themselves with treatment.


A really good website to go to...To see if you and your child to ready to transition -> Is My Child Ready To Transition to Adult Care