Friday, December 31, 2010

A Year in Review




Snow has finally fallen here in Denver - and stuck long enough for my kids to want to go outside and play! Getting them ready for the cold is always an adventure. You spend twenty minutes bundling them in coats, hats, mittens, scarves, and boots, just so they can spend 5 minutes in the snow before coming in shivering and asking for hot chocolate!

Brooklyn, my 3 year old princess, was insistent she couldn't find her coat this morning - and my husband knew it was upstairs in her room, and told her to go look, or she wouldn't get to go outside. She gave a pouty, frustrated look, and said "I can't find it!", before even looking. Like many of us, she didn't want to take the effort to actually do something for fear she would fail. Rich insisted she at least walk into her room and look at it. With a huff, up she went, and came down just seconds later, coat in hand. "Where was it?" Rich asked. "In my room! On my chair!"

Surprise, Surprise!


As I look back at the year, I can 1. breathe a huge sigh of relief that our family made it through, even with all of the ups and downs that were thrown in our direction, 2. be amazingly grateful for a year that included surgery on my hand tumors, a move to Denver, two trips to Disney World, and the release of my new book, and 3. that our family continues to strengthen as we enter 2011 and await all that the new year will bring.

Sometimes, it's truly hard for me to be excited about the New Year, because I know with it comes new challenges.  For our family, as it is with most any family with Neurofibromatosis, 2011 will be another year of endless doctors appointments, MRI's,Ophthalmologists, Neurosurgeons, chemotherapy, surgery, and working to Thrive through all the physical and emotional aspects of having NF. 

Sometimes I just want to sit on the couch, throw up my hands, and do nothing. Why can't somebody else go get my coat -- I mean, handle all these problems?!? 

Even as I begin whining about all this, of course, I think about the thousands of NF'er's who have NO insurance, and few options to deal with what's happening inside them. That's when my frustration turns to gratitude, for a government that shows me they care about my kids health, for places such as National Institutes of Health, and for all the specialists here in Denver I am blessed to work with.

I may be scared and uncertain about 2011, but I know I won't stay in that state of mind. Uncertainty is the single biggest reason people fall into fear and depression. Instead, as I look into the New Year, I will focus on what I AM certain of - my family's love, the friendships I hold with so many, both in person and online, and that I will always be a rock for my children and husband as we face each day together.

What can you be certain of? Each of us has something or things in our life we can count on, if we look hard enough, and in the right places. The worst thing we can do is sit in uncertainty and doubt, and, ultimately do nothing, even if it means never getting to go out and play, or, more importantly, tackling our disorder head on, in whatever way we can.

Happy New Year - make 2011 the beginning of Your Thriving Life!

Monday, December 27, 2010

What Happens Next?


The presents are opened

The house is a mess

the cookies are eaten

And I don't fit into my dress

The tree is down

decorations in a box

my feet are warm,

in my new red sox.

Christmas is over

In went in a flash

What did it mean?

Was it all about cash?

It's easy to forget

what Christmas is about

"I didn't get what I wanted"

Is said with a pout.

This day is much more than the stuff that you get

'bout a  miracle birth that happened one night

A child who'd grow into a man

and cure someones sight.

Christmas is over

but the memory is here

of the wonderful life given

so that I had nothing to fear

-Kristi
(Hey I tried)  :)

Friday, December 24, 2010

Merry Christmas!


Merry Christmas

To my friends and family-

May you have a very Merry Christmas!

And may all your New Years Dreams come true!

Monday, December 20, 2010

Motivational Monday--Thriving with Neurofibromatosis!

I am so grateful to have my book out, and for others to be reading my journey. It feels kinda weird though, that I now have more close friends than I could have ever imagined. I have gotten a lot of good responses, from those who relate closely to what I have experienced....and that to me, is both awesome and sad.

Why does Neurofibromatosis bring with it such loneliness and sadness? Why are there so many people out there who are suffering in silence?

The book is just the beginning of my Thriving Life...I have much more planned. But getting there has been a terribly rough road....and there are times when I don't think I can do it anymore....Times when I don't want to do it.



As my son enters puberty....NF is taking a cruel swing at his young body. I feel like David must've felt as he went up against Goliath. Against all odds, David defeated his giant foe. But what must David have felt? Surely there was a time where the battle seemed hopeless.

I'm scared for Braden. When I got the news of the MRI....all I wanted to do was to breakdown and cry. Questioning the heavens with why this was happening to him, when just a year ago his MRI was “stable”.

Everything happens for a reason? Really? What is the reason for tumors that are forming on my sons spine? What am I going to “learn” from my sons Optic Nerve being damaged?

I keep repeating in my mind “Thrive Kristi Thrive”. The bar has been set....and now I have something to live up to....people counting on me.

Attitude +Actions= Thriving.

It's time to step up my game. To not give in to this. To continue to fight, even when the battle seems hopeless.

Merry CHRISTmas
Thrive On!

Friday, December 17, 2010

MRI Results-Neurofibromatosis


"His results are a complicated mess," the MRI technician says to me, "We need him to come back in for more images."  I hung up the phone not sure what to think.  "Complicated mess?"  What does this mean?  What do we do from here? What, by the grace of God, am I supposed to think?
My answers wouldn't come until late today.  Despite the fact that his past MRI's showed nothing beyond some bright spots on his brain and small tumors at the base of his brain, despite the fact the optic gliomas are not supposed to grow past age 8 -- there it was - an optic glioma on his left side.

 In addition, multiple plexiform tumors are covering the bottom part of his spine (L-5 to S-5) as well as one under his left armpit. Long-term effects, if the plexis continue to grow could be devastating to his ability to walk, and even develop into scoliosis.
Another finding was that the tube connecting his kidneys to his bladder, called the ureters are doubles instead of single.  While not extremely uncommon, this disorder could cause several different issues down the road.
I stood outside, shivering in the cold wind of winter stunned. The doctor brought up a word we've been lucky to dodge to this point in our lives - Chemotherapy. Was I hearing the diagnoses of some other child?  Why just a year before weren't these issues picked up?  The world was spinning as I tried to absorb what our doctor was telling me. 


Ophthalmology---Neurology---Urology---Oncology

Referrals were all ordered for the countless appointments that lay before us. I hung up, and just stood there, too stunned to move. 

I had been babysitting kids this afternoon, and their mom was still there, listening to my end of the call. Ironically, I was babysitting so her husband could go to his own MRI. Rich showed up just minutes afterwards - it was all I could do not to break down the minute I saw him. I just told him results weren't good, and he quickly ushered out guest out of the house, and we headed downstairs to try to figure it all out. 

I haven't completely broken down yet. I've come close, but I don't think I've quite accepted it. Crying is ok, after all. Crying and grieving for broken dreams is part of Thriving. Because out of crying comes new dreams, and new hopes for Braden. He's my bright-eyed boy, and as the puzzle pieces of his battle with NF come together, he's going to put together the picture of his life through his own Thriving Spirit. And together - as a family - beyond the tears - we will all Thrive On.