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!