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

(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. 


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. 

Wednesday, December 15, 2010

Life with Aspergers Syndrome

What is Aspergers?
Asperger's syndrome, also called Asperger's disorder, is a type of pervasive development disorder (PDD). PDDs are a group of conditions that involve delays in the development of many basic skills, most notably the ability to socialize with others, to communicate, and to use imagination.
Although Asperger's syndrome is similar in some ways to autism -- another, more severe type of PDD -- there are some important differences. Children with Asperger's syndrome typically function better than do those with autism. In addition, children with Asperger's syndrome generally have normal intelligence and near-normal language development, although they may develop problems communicating as they get older.
Asperger's syndrome was named for the Austrian doctor, Hans Asperger, who first described the disorder in 1944. However, Asperger's syndrome was not recognized as a unique disorder until much later.

Two of my kids have the Aspergers diagnoses and pretty much fit the symptoms to a T. I have had many conversations with doctors, psychologists and teachers over the years, trying to figure out how my children see the world and it came to no surprise to me, when all groups agreed with the Aspergers diagnoses.

Kids with Aspergers see the world differently. Most don't understand non-verbal communication. For instance, I could smile with appreciation at my son who took out the trash without being told to, but he wouldn't make the connection that I was thanking him.

Or I could look crossly at my almost 15 yr old who did something inappropriate at family meeting, but she won't understand that look means "Stop doing that", unless I verbally tell her to stop.

Life with an Autism Spectrum Disorder is vastly different for children, who live in a world that is not totally understood, even by the most trained of doctors.

  • Problems with social skills: Children with Asperger's syndrome generally have difficulty interacting with others and often are awkward in social situations. They generally do not make friends easily.
  • Eccentric or repetitive behaviors:Children with this condition may develop odd, repetitive movements, such as hand wringing or finger twisting.
  • Unusual preoccupations or rituals: A child with Asperger's syndrome may develop rituals that he or she refuses to alter, such as getting dressed in a specific order.
  • Communication difficulties: People with Asperger's syndrome may not make eye contact when speaking with someone. They may have trouble using facial expressions and gestures, and understanding body language. They also tend to have problems understanding language in context.
  • Limited range of interests: A child with Asperger's syndrome may develop an intense, almost obsessive, interest in a few areas, such as sports schedules, weather, or maps.
  • Coordination problems: The movements of children with Asperger's syndrome may seem clumsy or awkward.
  • Skilled or talented: Many children with Asperger's syndrome are exceptionally talented or skilled in a particular area, such as music or math.

I know for my children, the very best thing I can do for them is to accept them for who they are. To be patient and understanding, as they try to understand their world.

Also it is very important, that the child's teachers understand fully about your child's diagnoses. Our family is going through a major transition right now, because our 13yr old is not getting the right kind of special education that he needs to be successful at school.

We are considering a home school environment for him.

Most children with Aspergers will require some kind special education

Special education: Education that is structured to meet the child's unique educational needs.

Behavior modification: This includes strategies for supporting positive behavior and decreasing problem behavior by the child.
Speech, physical, or occupational therapy: These therapies are designed to increase the child's functional abilities.
Medication : There are no medications to treat Asperger's syndrome itself, but drugs may be used to treat specific symptoms, such as anxiety, depression, hyperactivity, and obsessive-compulsive behavior.

  • Whatever the diagnoses you are dealing with...It is important that you stay focused on the solutions, not the problems. Uplift your child every chance you get. Let them know that being different, or having challenges, is not something to be ashamed of.

And most importantly....THRIVE ON!

Friday, December 10, 2010

Thriving with Neurofibromatosis

Wednesday night, I came home with 8 surprises. Our Church Life Group held its annual White Elephant Party. The objective is to open a gift, or steal someone else's open gift, which may then be stolen from you by the next person in line. Gifts are intended to be inexpensive, fun, unique, and ideally comical.

I spent the day coming up with 8 gifts, one for each of us in the house - and found myself thinking about the intent of game. I didn't want to be cruel and give something offensive (though I admit I walked the line dangerously by giving away our copy of Ring and Ring 2 at a church function...), and I thought back to past White Elephant parties I had been to, remembering the box of toilet paper, old tennis shoes, and even a dirty lawn gnome I'd received.

I went for slightly higher quality, finding functional toys from my kids piles and piles of playthings, to old games we never played anymore, to a rather nice book my husband borrowed a few years ago and never read. It was great watching the reactions of my friends as they opened them.

There was such a wide variety of gifts given that night, from a large, dark wine goblet bejeweled with the world PIMP (first opened by our preacher, of course), to a lawn frog that lights up (which I got), to a pretty pearly pink lamp (Riley was thrilled), to furniture casters (not so well received).

It made me think a bit about Neurofibromatosis (doesn't everything?). We never know what its going to give us. It's easy to look at some people with NF and think, gee, I wish I had it as easy as they do...but with the progressive nature of NF, who knows what we'll get next year?

I watched all sorts of reactions - from my three year old happy to get a fairly well-used barbie car with barbies, to a ten year old unhappy with her useless gift, to my husband, who loves the movies he managed to grab.

Sometimes its not what we get that matters - its what we do with it. Thriving isn't dependent on our circumstances - its a way of handling our circumstances.


Monday, December 6, 2010

Do You See What I See?

Rachel has Neurofibromatosis and has had lots of issues with her eyes.  Today was her 'every 3 month' check up and we expected to hear what we have always heard.

But instead of "Rachel's vision has gotten worse", we instead heard whispers of confusion, and double checking of chart notes.

Rachel's left eye, had been 20/200, and was now testing at 20/25.  Her Right eye at 20/20.  I asked the doctors to check a third time, just to be sure.

Sure enough, Rachel's vision has taken a turn for the better!  The doctor said to me, "Sometimes there are no explanation for things that happen."

This was all I needed to hear.  What a blessing!  Of course Rachel had no clue why I was so happy, she was just happy to be done with the exam and wanted get to school in time for lunch.

Thank You God!

Sunday, December 5, 2010

Reaching Out-Neurofibromatosis Style!

Obviously, I talk a lot about thriving. Not just with NF, but also in the other challenges I faced while not even knowing I had NF.

Ten...heck even five years ago, I was in no place to be out in the open with my NF. I was still in serious denial about what was happening to and around me.

What I've come to realize is that the more I'm "out there", the more I come to accept my diagnosis - and even help others accept theirs. The key to creating a more positive outlook on my life with Neurofibromatosis was to become my own Advocate - to stand up for myself and my kids.

The Children's Tumor Foundation in Denver held the 6th Annual Gingerbread House Decorating Activity today. Bailey, Braden, and Brooklyn all attended with me, while Riley, Rachel and Riker spent the day rehearsing for our church Christmas Play next week. Rich, in his infinite wisdom, stayed home watching football - COWARD :)

What a wonderful turn out there was...and GREAT opportunity to continue to reach out to families affected by NF.

I met so many new people today, with all levels of NF. One woman and her daughter stuck out in particular. She talked about how long she had been receiving the CTF newsletter, but she had never gone to an event until today. Like me, she was prompted by her desire to give her daughter, who also has NF, an opportunity to relate to others her age with the disorder - to stop hiding at home and seek encouragement from others. What she didn't realize is that her presence was an encouragement to all of us as well.

When we as NF'ers stand out in the open, when we stand together, we can find the hope that seems so difficult to hold onto when we stay hidden behind closed doors.

In Thriving with Neurofibromatosis, I talk about having the right Attitude, and taking Action. Today, I did that, along with about 50 other people, and we had a blast. What can YOU do this week? Who can you encourage? Remember, the easiest way to cheer yourself up is to spread the cheer YOURSELF!

Thrive On!

Saturday, December 4, 2010

Rachel's Birthday

 Princess Cake!

"I'm Eight!"

 Princess Pinatta


Happy Birthday my sweet baby girl....I love you so much!

Which Disney Princess has Neurofibromatosis?

Tough to say, isn't it? And Disney would probably say none of them.

Princess Rachel does have it, of course, and she is finally having her 8th birthday party today - always tough when your birthday is so close to a major holiday. She's having a Princess-themed party, inviting her school friends to arrive in their best costumes. Looking forward to what the lone boy arrives wearing!

I'll have pictures up later today of the fun - meanwhile, enjoy an excerpt from my new book - a few pages from the chapter entitled Worst Year Ever! Check it out here:

Gotta go - Party Thrive On!