Thursday, May 28, 2015


I don't even know what to think....Or how to process this.  So I am going to try and write this out.  Maybe ...JUST MAYBE it will help sort out how I am feeling.  Probably not tho. Sometimes...REALLY CRAPPY things happen....And there is no way to make sense out of them.

The picture above is of a house.  A house that belonged to a very good friend of ours.  A home that this friend opened up to my family....When my family had no where else to go.

Terry Canfield was Rich's friend -- I think they met through Toastmasters.

In 2008....Terry invited our ENTIRE family to come stay with him.  In HIS house....While he moved into his trailer.  No strings.   

Just a selfless act, to help us get back onto out feet.

We lived with Terry for about 20 months...And during that time got to know just how genuine our friendship was.

Terry never once asked for anything in return.

Yesterday morning, Rich called me downstairs to tell me that the house we lived in was destroyed by fire...And that it was very likely that Terry, his wife and her son, all died.

Just like that.

I never experienced tragedy like this...So all of these feelings I am feeling are new. I can't begin to express the emotions that are racing through me.

Terry was a firefighter....HOW COULD THIS HAPPEN?

An investigation is ongoing....And this case has turned into a homicide....Which just makes all of these feelings even more confusing!


I have asked God this question more times than I care to admit.  But honestly....WHY?

The lives we touch while we are alive -- You truly never know the impact....Sometimes, until after death....

Terry....I wish I could have shown you more appreciation, for the sacrifice you made for our family. You were a true friend.  And I will miss you.

Pay attention to how you live your life.  Take it slow.  Soak it all up.  Cherish your loved ones.  Pay it forward.  LOVE Deeply.  Give generously.


RIP Terry, Lisa and John

Wednesday, May 20, 2015

Neurofibromatosis Clinic

These yearly appointments always overwhelm me.  They make for a long day...And the information we get is quick and concentrated.

Here is some advise on how to make the most of your NF Clinic Appointment.  I hope it helps!

  • Plan for a LONG appointment! These appointments can take a while....Mostly because you are seen by a number of different doctors.  This is GREAT...But can also make for a lot of waiting around.  Bring a book and activities for your child.  (and Food.  Bring Food!)
  • BE ON TIME!  Typically WE schedule our NF appointment a YEAR in advance....So be respectful - and know that there are other families that will be affected if you are late.
  • Write your questions down (and remember to bring them with you. *lol*)  Note ANY concerns that you may have...NO-MATTER-HOW-SMALL-THEY-ARE!  
    -You will see many doctors during this visit...So make sure you are covering any issues you would like to discuss.
    Take the time to write the answers you get down....I know for me...I am great at asking the questions....But LOUSY at remembering what the doctor actually said to me.

  • GET REFERRALS!  This is a GREAT time to let-it-all-out and get answers and referrals for your child!  At our appointment...We got referrals for: MRI, Sleep study, Medication changes, dietitian, pain management clinic, behavior clinic and psychiatry appnt....Don't be afraid to ask....and be open to suggestions!

    Our appointment was a little different than yours will be....After all, I had THREE kids being seen...But the general idea, is to be ready....And try not to get overwhelmed.  These appointments are to HELP guide you through this diagnosis.

    If you have any specific questions about your NF appointment...Please comment below and I will respond.

Wednesday, May 13, 2015

It's A Small World

I know that I have been MIA lately.  I'm sorry for that.  It's amazing how fast life can sweep by.  The "business" and distractions have left me feeling very run down....And when it comes time to thinking about what I could do for NF Awareness month...I just feel like....I have nothing left to give.

But - I know this isn't true.

I spread NF Awareness EVERYDAY!

There are times where I am shouting from the mountaintops....And other times, where my awareness is simply connecting with a quiet smile.

Last week, a man came to the theater where I work...Who was affected by NF in a more severe way than me....He was wearing a hoodie and didn't make eye contact with me.  But when I gave him his change...My hands touched his hands, that were covered in tumors.  

I felt him recoil.  I told him that I had some of the same tumors that he had...And at that moment....everything slowed down.  He asked if I had NF....And I told him Yes.  He smiled ....I smiled.

He said he had never met ANYONE with NF before.

That felt good.  

He went on his way....Off to watch the Avengers....Now knowing that HIS world became a little bit smaller.  He wasn't alone anymore.

I like MAY.  A special month to do everything we can to spread awareness.

BUT...Awareness happens everyday for those living with this disorder.  It happens on-the-spot and out-of-the-blue.  It happens when people stare too long at you...wondering - what's wrong with her? 

Teaching and talking about NF happens on days where you just want to be left alone....

And in reality....The awareness that happens on ALL THOSE OTHER MONTHS...Is what REALLY matters. 


Wednesday, April 1, 2015

Been MIA....But I Have a Good Excuse

The last 2 weeks have been incredibly busy.  Lots of good things have happened, and I am trying to find my groove and feeling a huge range of emotions, as I am learning to let go of some of the control and find new ways to trust the situation we are in.

After a 7 year "break" from working outside of the home....Our family has been faced with a pretty stressful predicament - 

Our rent went UP...AGAIN....And we also got news that the State of Colorado feels that one of our kids who receives disability for the complications of having Neurofibromatosis....Suddenly is "all better" and no longer considered eligible.

For those living with a Progressive.....Aggressive genetic disorder...That can turn deadly without warning....Being told you are "all better"doesn't fly.

My husband met with someone hired by Social Security....Who CLEARLY had NO IDEA what Neurofibromatosis is....Who just asked a few questions and jotted down some notes about how SHE FELT Rachel is doing....A WHAM BAM- THANK YOU Ma'am interview, that clearly had an affect on the decision....And was based on no real information....

So....Basically, we could have appealed the decision, but instead ...We chose to let it be.

Which meant, we now had to figure out how to make up that income, and be sure to have enough money to also cover the jump in our rent.


So....I dusted off the ol' resume....added a few things that would be sure to grab some attention.....And applied for a few jobs.  

5-6 Applications later.....I started to get some phone calls asking for interviews.

This is when my emotions began their roller coaster ride.

I was HAPPY that I was still a desirable potential employee.  

I was SAD that IF I was hired, I would miss out - at what was going on at home.

I was ANGRY that it was ME going to work.

I was EXCITED about 'getting back out there'.

I was PROUD to be ABLE to work and help out the family.

Then...I was actually hired.

I started working at the movie theater....The BEST choice of the 5-6 jobs I applied for, with the BEST "perks"....(Free UNLIMITED movies for ME and the ENTIRE family!)

---Then Mikey (my brother) came out for a visit...Just as I was beginning my training at AMC.  Bad timing....but it ended up working out okay.

So aside from having to clean up VOMIT....URINE and other interesting things at the movie theater....The job is pretty cool....I am now working as a 'Barista' -- making cool coffees and ice cream stuff.....
I was also 'Awarded' a cool gift certificate for having a customer tell a manager that I was super nice and provided the FIRST smile he had seen all day....

I am learning to let go -- And trust my family 

And allowing Rich to take over.

As we head into April....May....It is also time for our yearly check in with the NF clinic.  This means MRI's --  Eye checks -- and a bunch of other NF-y type stuff.

Both Rachel and Bailey have MRI's coming up...and I won't be able to be there.  This brings ALL of those emotions up and stirs them around, and makes me feel rather crummy....

But I know that ALL of this....Is just part of working together as a family....And I have to trust that everything will be okay.

My 'THRIVING' is being tested...And it's NOW, that I need to prove that it is possible!

I hope to get more video blogs up and going...But for now I am just happy to have the time to write :)