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!

Monday, November 29, 2010

Ready or Not...Here I come!

When I was diagnosed with Neurofibromatosis, I remember the sensation of knowing that there was something inside of me that was doing harm to my body. It was like the NF became its own living entity, the monster hiding under the bed. In fact, for a few days, it was all I could think about as I got my mind around what this meant for me, my family, and our future.

One of my friends said to me, “Sure, you have NF inside your body, but you also have Christ.” I will never forget those words. They were simple, to the point, and incredibly true. To know that whatever we are facing inside our bodies, or our lives, God is right there living in us, too, ready to protect and care for us from the inside out.

It has taken me a long time to accept the reality of NF, and to stop hiding from the very obvious symptoms.  I, in fact found a lot of comfort in my hiding, but came to realize, that it was not doing anybody any good.  If I wanted to live a full and happy life, I had to face my issues head on.

Disease and illness may permeate our bodies, but God promises that they cannot permeate our souls and spirits unless we let them.  Fear is the enemy of hope and the opposite of faith...What are YOU living with?

Thursday, November 25, 2010

Happy Thanksgiving

November brings us the simple reminder that thankfulness is truly the kind of spirit we are to have, and this thankfulness will be more meaningful when we are both thankful to those around us, as well as our God above us.

Thank you to my friends and family for your support and love!

Monday, November 22, 2010

A Lesson in Humbleness-Thriving with Neurofibromatosis

While on our vacation at Give Kids the World, I met a few wonderful families who have children that are suffering extremely debilitating conditions.

It was both hard and inspiring watching how these families thrive, despite a seemingly hopeless situation.

I met a woman who was staying in the villa across the street. She brought a houseful of kids and she told me her story, while we both gathered food from the passing breakfast cart.
As we held the donuts, cereal, milk and juices in our arms told about her son who was hit by a car, and left for dead.

"He was in a coma for 3 months. He was left paralyzed" she told me. "The doctors all told me to 'unplug' him.....that he would be nothing but a vegetable." She refused to give up on him and kept believing that unplugging him was not the right choice to make.

She fought against what the doctors told her, and while her son faces many many issues, he is far from a vegetable. I was in awe of the strength this woman carried around with her.

She wasn't angry or resentful....She was strong and confident in her choice to fight for her son. These are the kind of people that help me with my own strength.

I am so grateful for my life and my children's lives. I am THANKFUL for what I have and I appreciate people who show me what true strength is.

Thrive On!

Saturday, November 13, 2010

Thriving with Neurofibromatosis....Book Edition!

I have written a story about my life, growing up around Neurofibromatosis. Not being diagnosed until an adult, I talk about dealing with symptoms as a child that had no answer.

The story centers around my family; Their symptoms as well as finally realizing that my attitude about NF needed to change. The fear of realizing I was suffering from the same disorder my brother and mother was a crushing blow.
This fear had me hiding for far to long.

'Thriving with Neurofibromatosis' was born because I realized that 'Hiding with Neurofibromatosis' was not helping anyone....

I hope you are inspired by the stories in this book . I hope that it helps you or a loved one

******Book will be sent --and signed in mid/late December*******

Friday, November 12, 2010

CTF Hosts The 6th Annual Gingerbread House Decorating Party

Sunday, December 5 · 2:00pm - 4:00pm

Colorado Academy, In the Campus Center (dining hall)

3800 S. Pierce Street
Denver, CO

Join us for a fun holiday tradition of the Colorado Chapter of The Children's Tumor Foundation. We will provide a gingerbread house for each child or young adult to decorate (ages 3 to 18). Adults willing to volunteer are also welcome. Please bring at least one bag of candy as decorating material (no peanuts/nuts please!).

Contact Catherine Laskey @ (303) 734-9942 or to RSVP or if you have any questions. Hope you can join us!!

Wednesday, November 10, 2010

Make A Wish--Neurofibromatosis

Our lives have been greatly blessed.  It has also been greatly challenged.  This is why organizations like Make-a-Wish exist.  We appreciate Make-a-Wish so much, for granting our family, not one, but two trips to Disney World.

When we first got in contact with Make-a-wish, it was because I had been interested in volunteering for the company.  One of the ladies who works there, began to follow my blog.  She read about the string of complications that my 7yr old daughter was facing.

I was asked to apply for a wish for Rachel, who was then undergoing treatment for vision loss.  We applied and the whole family was sent off to Give Kids the World in Orlando.  Rachel's wish of meeting the Princesses and seeing the castle came true, and it was absolutely amazing!.

Almost 6 months later, and after our move....I got an email from a woman who worked in the Colorado office of  Make-a-Wish.  She was asking me about volunteer opportunities within the company.  In my e-mail reply to her was a link to my blog, in which she clicked and began reading.

The stories of what my family had been facing, she told me, broke her heart.  "Bailey needs a wish" she said. Hesitantly I agreed to apply .... Knowing that most families are lucky to receive ONE wish, and here we were, about to receive TWO!

Without prompting ....We met with the wish folks and Bailey listed off 4 of her top wishes.
1- To go to Hollywood to see the taping of Sonny with a Chance
2- An I-PAD
3- To be a chef and learn some cooking tips
4- To be able to go back to Disney World

A few days later, I got a call telling me that Make-a-Wish wanted to send the family back to Florida.  I was shocked!  I was sure that Bailey would have gotten one of her less extravagant wishes.

The wish granter gave me dates, that were to be only  a few weeks away.  YIKES!

So, as we prepare for our trip, we keep in mind how truly special this gift is....And want to THANK the organization for blessing our family with this wonderful experience.

With surgery looming for Bailey, we will make sure to take it all in, and make memories that will last forever.


Tuesday, November 9, 2010

We Are Beautiful-Thriving with Neurofibromatosis

Don't let words bring you down.  Stand up and show the world just how beautiful you are!
Thrive On!

Monday, November 8, 2010

Stop and Smell the Roses....Or Not.

I've learned some really good lessons lately about trust.  With 6 kids, you are bound to have at least one with something medically challenging happening.  Well our family has so much going on medically, that I sometimes get so overwhelmed and forget about all the amazingly good stuff going on.

I came across a wonderful story that helps me see things in a different way. I wanted to share it with you and hope that you will also adopt a new way of thinking.  

I wanted to thank this mama for sharing this well as the story of her family.  Drop in and visit her blog.

Author: Unknown
More of a story…
Sandra felt as low as the heels of her shoes when she pulled open the florist shop door, against a November gust of wind. Her life had been as sweet as a spring breeze and then, in the fourth month of her second pregnancy, a “minor” automobile accident stole her joy. This was Thanksgiving week and the time she should have delivered their infant son. She grieved over their loss.
Troubles had multiplied.
Her husband’s company “threatened” to transfer his job to a new location. Her sister had called to say that she could not come for her long awaited holiday visit. What’s worse, Sandra’s friend suggested that Sandra’s grief was a God-given path to maturity that would allow her to empathize with others who suffer. “She has no idea what I’m feeling,” thought Sandra with a shudder. “Thanksgiving? Thankful for what?” she wondered. “For a careless driver whose truck was hardly scratched when he rear-ended her? For an airbag that saved her life, but took her child’s?”
“Good afternoon, can I help you?”
Sandra was startled by the approach of the shop clerk. “I . . . I need an arrangement,” stammered Sandra.
“For Thanksgiving? I’m convinced that flowers tell stories,” she continued. “Are you looking for something that conveys gratitude this Thanksgiving?”
“Not exactly!” Sandra blurted out. “In the last five months, everything that could go wrong has gone wrong.”
Sandra regretted her outburst, and was surprised when the clerk said, “I have the perfect arrangement for you.”
Then the bell on the door rang, and the clerk greeted the new customer,
“Hi, Barbara, let me get your order.” She excused herself and walked back to a small workroom, then quickly reappeared, carrying an arrangement of greenery, bows, and what appeared to be long-stemmed thorny roses. Except the ends of the rose stems were neatly snipped: there were no flowers.
“Do you want these in a box?” asked the clerk. Sandra watched – was this a joke? Who would want rose stems with no flowers! She waited for laughter, but neither woman laughed.
“Yes, please,” Barbara replied with an appreciative smile. “You’d think after three years of getting the special, I wouldn’t be so moved by its significance, but I can feel it right here, all over again,” she said, as she gently tapped her chest.
Sandra stammered, “Ah, that lady just left with . . . uh . . . she left with no flowers!”
“That’s right,” said the clerk. “I cut off the flowers. That’s the Special. I call it the Thanksgiving Thorns Bouquet. Barbara came into the shop three years ago, feeling much as you do today,” explained the clerk. “She thought she had very little to be thankful for. She had just lost her father to cancer; the family business was failing; her son had gotten into drugs; and she was facing major surgery. That same year I had lost my husband,” continued the clerk. “For the first time in my life, I had to spend the holidays alone. I had no children, no husband, no family nearby, and too much debt to allow any travel.”
“So what did you do?” asked Sandra.
“I learned to be thankful for thorns,” answered the clerk quietly. “I’ve always thanked God for the good things in my life and I never questioned Him why those good things happened to me, but when the bad stuff hit, I cried out, Why? Why me?! It took time for me to learn that the dark times are important to our faith! I have always enjoyed the flowers of my life, but it took the thorns to show me the beauty of God’s comfort! You know, the Bible says that God comforts us when we’re afflicted, and from His consolation we learn to comfort others.”
Sandra sucked in her breath, as she thought about what her friend had tried to tell her. “I guess the truth is I don’t want comfort. I’ve lost a baby and I’m angry with God.”
Just then someone else walked in the shop.
“Hey, Phil!” the clerk greeted the balding, rotund man.
“My wife sent me in to get our usual Thanksgiving arrangement . . . twelve thorny, long-stemmed stems!” laughed Phil as the clerk handed him a tissue wrapped arrangement from the refrigerator.
“Those are for your wife?” asked Sandra incredulously. “Do you mind telling me why she wants a bouquet that looks like that?”
“Four years ago, my wife and I nearly divorced,” Phil replied. “After forty years, we were in a real mess, but with the Lord’s grace and guidance, we trudged through problem after problem, the Lord rescued our marriage. Jenny here (the clerk) told me she kept a vase of rose stems to remind her of what she had learned from “thorny” times. That was good enough for me. I took home some of those stems. My wife and I decided to label each one for a specific “problem” and give thanks for what that problem taught us.”
As Phil paid the clerk, he said to Sandra, “I highly recommend the Special!”
“I don’t know if I can be thankful for the thorns in my life” Sandra said to the clerk. “It’s all too . . . fresh.”
“Well,” the clerk replied carefully, “my experience has shown me that the thorns make the roses more precious. We treasure God’s providential care more during trouble than at any other time. Remember that it was a crown of thorns that Jesus wore so we might know His love. Don’t resent
the thorns.”
Tears rolled down Sandra’s cheeks. For the first time since the accident, she loosened her grip on her resentment.
“I’ll take those twelve long-stemmed thorns, please,” she managed to choke out.
“I hoped you would,” said the clerk gently. “I’ll have them ready in a minute.”
“Thank you. What do I owe you?”
“Nothing. Nothing but a promise to allow God to heal your heart. The first year’s arrangement is always on me.”
The clerk smiled and handed a card to Sandra. “I’ll attach this card to your arrangement, but maybe you would like to read it first.”
It read:
“My God, I have never thanked You for my thorns. I have thanked You a thousand times for my roses, but never once for my thorns. Teach me the glory of the cross I bear; teach me the value of my thorns. Show me that I have climbed closer to You along the path of pain. Show me that, through my tears, the colors of Your rainbow look much more brilliant.”
Praise Him for the roses; thank Him for the thorns.
I am so thankful for my thorns.
What are you thankful for?

Monday, November 1, 2010

After The Mask-Thriving with Neurofibromatosis!

It's tradition, Halloween is meant to scare. Neighborhoods are decked out in spider webs, carved pumpkins with freaky faces, skeletons, and witches. We watch scary movies and go to haunted houses just to get that extra thrill.

For some, though, Halloween is seemingly lived year round. Living with a condition that makes you less than "normal" is something that many people experience. Having a highly visible disability can make the holiday feel odd and unsettling. I often joke that I should just Trick or Treat naked, painted orange, and say I'm Muno. I laugh as I say it, even to my husband, who laughs with me. But in truth, that's just a mask as well - deep down, when I really look at it, it hurts.

I am friends with many men and women who are much more severely affected by Neurofibromatosis than I am. While we all suffer from the same disorder, their Plexifom Neurofibromas create visible deformities, such as those often identified with the Elephant Man - to the point that our disorder is often linked with Proteus, which is the actual Elephant Man's Disease. Unlike the common neurofibromas, which stay round and contained, regardless of how numerous they become, plexiforms have no such boundaries. They can twist and disfigure a person's body and face with ferocity.

While the rest of the world put away their masks last night, my friends cannot escape their deformities.

Masks, though, go beyond our looks. Masks come in the form of attitudes. This is one of the reasons Halloween is so popular - its a day where 'normal' people trade in their emotional masks for physical masks that won't be judged. For one day a year, the world can be whoever they wish to be, with no judgement.

But the real Halloween is what the average person lives year round, as the world hides behind false motives, their fake fronts, and a false sense of normalcy as they walk through life pretending its better than it is, so they don't have to face reality.

Those in the NF community who experience the harshest of NF's effects are faced with their reality daily, and we have many in our ranks who face the world head on, regardless of the world's difficulty doing the same in return. The nastiest masks are never worn on the outside, but on the inside, keeping us both from discovering who we really are as well as letting others see the same.

Many have suggested that Thriving is just a mask - meant to cover the reality of the pain. That isn't Thriving however. Thriving is seeing the masks that we wear, and learning to throw them out in favor of reality, accepting it, and moving forward anyway.

Thrive on!

Wednesday, October 27, 2010

A Time For Change

 I love Fall. The colors, the smells, and MMMMMM the tastes! Fall is filled with changes. The old shedding, so that new can grow. 

Before my diagnosis with Neurofibromatosis, I existed in a life of survival.  I couldn't grasp the meaning of hope or Thriving.  

I have been to the deep, dark, airless places of adversity that have sapped every ounce of energy and hope from me.  Times when survival is my only option.

But what happens after survival?  How do we change and turn the attention to theThriving end of the balance?  How do we find hope, in a seemingly hopeless situation?

We all live our busy lives.  Filled with "go here", "do this" ....I know for me, when life seems to be going smoothly, it's easy to Thrive, to find hope.  But it doesn't always take much to throw me off this path.

News of a new brain tumor earlier this year filled me with despair for my 14 year old daughter.  Wondering what life will hold for her future.  Revelations from the Ophthalmologist that my 7 year old daughters vision is getting worse and to prepare for her to have major loss by the time she is 20.

It's so easy for hope to be smashed, dreams to be crushed....and for THRIVING to go right our the window.

The thing I try to remember is that I am much bigger, than anything or any struggle that comes into my life.  I am much more than just an endurer of problems. 

I had to be willing to open myself to a change.  Be willing to accept, that I didn't have to control everything in my life....and trying to control, would only find me getting further and further from where I wanted to be.

What a concept!  Letting go actually gave me more control? Absolutely! Accepting what is, does not mean that I have given up control to do something about it, just given up wasting energy on anger over its existence.  In fact, doing this has given me the opportunity to do the opposite, and gain control over how its existence will be tolerated.

It's easier for me to learn, teach and give back, now that I have chosen to embrace and accept what is happening in my life.  Opening myself up to change, helps me so much in being who I have always wanted to be.

I had to shed the old Kristi, to become the NEW Kristi. It's not easy, but we can endure the losses like the falling leaves of Autumn, we brace ourselves through the icy cold of Winter, because we know the warm, green-tinted life of Spring will come - and we will again be able to Thrive.

Thrive On!