Happy Mother's Day to Every Woman

I am confident in myself in large part because I am blessed to have been shaped by several amazing women over my short 30 years. I love each of them for what all women are: Creators, lovers, whimsical, mysterious, vulnerable, strong and beautiful. Mother's Day is for every woman who has ever born pain with a smile, bent down to help another woman's child, cooked for so many people she ran out of dishes, stayed up late enough for the kids to finally pass out so she could steal hushed kisses from their Father, or simply kissed him right in front of them because her greatest hope is for her children to know how to love as fully as she does. I have an abundance of amazing women in my life such as these, and to every woman who chooses to take on the role of Mommy... Happy Mother's Day.

My hero...

Eight years ago my rambunctious 2 year old was diagnosed with Neurofibromatosis Type 2. I wish it had been the first time we learned of it, but JT is actually the 5th person in our family to carry this devastating genetic disorder that causes tumors to grow on any nerve ending in the body. We have lost my Grandmother at age 42, my Uncle at just 27, and my own mother at 39 when Jt was a toddler. She loved him so very much... 

JT was diagnosed when his eye doctor noted retinal hamartomas of both his eyes. The tumors leave him blind in one eye and impaired in the other. JT has been put to sleep for MRIs every 6 months since then to track his nervous system for any new tumors or growth. Last year we were told he is now developing the hallmark brain tumors of NF2 known as Vestibular Schwannoma. As these tumors grow they cause deafness, facial paralysis, and severe coordination difficulties which are often exacerbated by risky treatments that serve only to buy him time.

5 years ago JT and I got involved with the Children's Tumor Foundation. JT takes pride in training to run with the NF Endurance Team each October in Long Beach, and to date we have raised over $10,000 toward vital NF Research! 

Now we want to ask our friends and family members to join us as we embark on a new fundraising opportunity for CTF with their Racing for Research program...

On April 20th JT will have the amazing opportunity to join  GMG racing and the Pirelli World Racing Series at the Long Beach Grand Prixe to help raise awareness in his role as a NF Hero!!

JT is incredibly honored to participate, and we would both like to ask our family and friends to please take a moment to donate in his name to CTF in support of this amazing opportunity! Every dollar helps, and we thank you with all our love for your ongoing support in this battle!

Remember to never ever give up!

JT is super excited to serve as a Nf Hero at the Long Beach Grand Prixe with CTF's Racing for Research team! Please take a moment to visit his page, share, and donate if you can. It is the support of our community that is Fueling the Cure!

http://ctf.kintera.org/faf/donorReg/mobileDonorPledge.asp?ievent=1053125&lis=1&kntae1053125=7E62FA86C4CB4F6AB6D1D27EBA918192&supId=324532913&team=0&scWidth=320&extSiteType

Reckoning

I have been languishing in a state of survival while taking the chemotherapy Votrient for the past year. My most recent MRI report contained a word I have a love-hate relationship with: Stable.

Have you ever woken up and decided to be someone else?

Last year I woke up and I was not a runner anymore.
I didn't have long hair anymore.
I couldn't allow my children to go to public school anymore.
I refused to do math while trying to eat anymore.
I refused to hate myself for being born broken anymore...

Anymore...

I changed, maybe for the best... maybe not.
Then I came here, to my blog, where I used to see a blank page as a personal challenge, and I stared at the title and thought, "How can I continue to be the Fabulous Running Mommy if I do not run anymore?

Anymore...

Yet, here I am...

I go to Crossfit almost every day and leave covered in sweat with a smile.
I chopped my last remnants of hair, dyed it blue, and dared the world to argue.
I gave up spending my mornings in pajamas and brought my children home to educate them the way I see fit.
I grew tired of my mind always being slowed down by disease, and started reading novels worthy of my time again.
I found that I have value beyond simply existing.

I have known that at some point I would need to rectify my past and current states of being. That is where I am now.

For now...

I am taking a break from the pile of pills I was swallowing every morning.
My mind is clear, the future seems promising, and I am learning what it feels like to believe I am not dying more then living.

I continue to run.
I run my life, I run my home, I run forward... but never in circles.
I would say I am back... but I never left.

Long Beach Marathon 2012!

Well here I am 5 years later, a little older, a lot slower, and very happy. This year the NF Endurance Team hit the Long Beach Int'l Marathon, and I was there to serve as a Team Captain for my 5th year in a row. I doubt that really surprises anyone, but the real icing on this year's cake was my Dad ran the 5K with me! Yes, he put down the cigarettes, laced up his running shoes, and used his long lean legs to lope just a bit in front of me all the way to a huge finish! I was so proud of him, he really is built to be a runner and I hope he continues to RuNFor a Reason... ME haha, ok and JT. Speaking of JT, my amazing lil' man once again smashed the Aquarium of the Pacific Kids' Fun Run along with his friend and teammate Haley Cruz. The kids did a wonderful job, and Mica did her part shaking her yellow NF Endurance Team Bell as loud as she could while we all cheered JT and Haley to a strong finish!

I met several new friends, and we welcomed another family into our close-knit team. Team eNouF kicked fundraising booty this year, and it was great to meet another group of passionate people working hard for a cure.

On top of all of this, my parents booked an amazing 2 bedroom suite overlooking the quiet gray pacific. In between networking and team duties, we were able to sneak away "just us 6" for some much needed family time. Paul worked hard all weekend loading, unloading, carrying, setting up, and just generally helping wherever he could. As I said during my talk at the annual Team Pasta Dinner, thank you Paul, you are my best friend and I love you. (awwww, mushmush)

So to conclude... yes finally... it was a wonderful weekend, I was able to see people I adore, raise money for a great cause, cross a finish line with my Daddy and cheer for my only son as he did what he does every time, make me so incredibly proud of who he is.

You can check out an article I was interviewed for in the Long Beach Press Telegram here: http://www.presstelegram.com/ci_21720894/long-beach-marathon-participants-had-reason-run
You can see our fundraising page, and if you are so inclined, we are of course still taking donations. In fact, we will be until a cure is found HA
http://ctf.kintera.org/faf/home/default.asp?ievent=1008232#.UHT6awtqmOw.facebook
And finally, you can see all the photos I took here! Why are my children painted as zombies?? They sat for a make up session to earn Momma some free tickets to a Zombie Festival! Minions come in handy these days...

NF Endurance Team Photos!

 

My Inspiration

This weekend I will return to the Long Beach Int'l Marathon to serve as co-captain of the LB NF Endurance Team for my 5th time. When I reflect over the past five years I see a lot of ups and downs, but more importantly I see a permanent change I have made within myself. I have been filled with positivity, with motivation, and with a sense of community that comes from fighting side by side with others who live through the same battles, and much worse even, every day. I am inspired by people who go through so much more and do so much more then I could ever hope to do. These amazing people in our NF community fill me with hope and propel me forward on every course I have ever raced. I know that when I am spending time in the Hello Kitty Cave, or taking time off to just pretend our problems don't exist, these NF Warriors are still out there. I hope they all know when they need time to take a step back from the community to focus on their own families, as I have over the last year, that I will do my best to have their backs as they have mine. Every time any of us lead a support group, reach out to a newbie who is terrified by a recent diagnosis, lobby for research funds, run or walk to fundraise or donate out of our own pockets toward our shared goal of curing this devastating disorder, we are all supporting this amazing community that is the only silver lining to this damn thing we all live with every day. Together, that is exactly what we do... We live. We breathe, we love, we share, and oh yes we fight just as surely as any other family. So on race day these are the people in our NF community who consistently fuel my drive by supporting me directly as well as inspiring us all...

Jimmy Jackson... Now many of you are lucky enough to consider Jimmy a close friend, because he has a way of making everyone feel like his friend. I don't know how many times Jimmy has stepped up when needed to keep the NF2 Crew functioning and happy, but he took over for me when I couldn't handle the strain of moderating such a large group, and he helped everyone get along as only he can, with simplicity and kindness.

Tracy Galloway... Tracy's daughter was diagnosed as a teenager and Tracy has made it her mission to save her by any means necessary. This woman learned more about NF in one year then most of us who have been involved over 20  or even 30 years have!  She asks specific questions, and if there is no answer she asks why not? She steps up to help in any way she can constantly, whether it is as a friend or in a professional role. She is efficient, intelligent, opinionated, and just one hell of a woman.

I will only name one more person, although there are so many more, and that is Bob Skold. He works at CTF for the NF Endurance Team, and has gone above and beyond to fill that role over the years. He has run over 50 marathons for the cause, as well as an ultra marathon or two! He is modest, he rarely can answer when I ask what his finishing time was, instead focusing on all the people he is intent on helping via his role on the team. So imagine my surprise when I was lucky enough to line up at a starting line with him one year and he left me in his dust! He has this elegant lope, and a steady determination that gets him across the finish line every time, whether it is a literal or proverbial race. The team has changed a lot recently, but Bob remains as dedicated as ever.

I hope each of you, Jimmy, Tracy, and Bob knows I am sending you love and gratitude from the pavement this Sunday. Thank you from the bottom of my heart for inspiring me every day.

Tomorrow

Time rolls under my feet like asphault beneath my wheels on a road trip toward a horizon that seems so close it burns my flesh. The stench of decay settles wearily upon me, I take no notice of it. It was there the day I was born, and will undoubtedly follow me to the grave. Love expounds from my bloody heart, the day it lies dry the destination will have been found.

Will it be all we expect it to be? Much more, or frighteningly less?   Why is my blog always so damn emo? If you know me at all you know a few things about me:

I never shut up. Ever. Right now I have simply exchanged speech for text.
I am highly opinionated, but only moderately educated, and slightly indignant.
I brake for tail-gaters. 'Tis true.
I brag about my children a lot, and when other parents don't, I wonder "Why not?"

I browse other people's blogs and wonder why I am not as fun, or fashionable, or talented, or motivated. I think that we all feel that way, but still feel slighted and unecessary.

Moderation is not in my repertoire of prior experience.

I long to have some sort of kitchy, stylish, up-cycled, mint-colored blog about all of Mica's newest clothes from Target and JT's latest fascination with losing teeth.

Tomorrow, I will be her.

You may know...

Time rolls under my feet like asphault beneath my wheels on a road trip toward a horizon that seems so close it burns my flesh. The stench of decay settles wearily upon me, I take no notice of it. It was there the day I was born, and will undoubtedly follow me to the grave. Love expounds from my bloody heart, the day it lies dry the destination will have been found.

 

Will it be all we expect it to be? Much more, or frighteningly less?

Why is my blog always so damn emo? If you know me at all you know a few things about me:

• I never shut up. Ever. Right now I have simply exchanged speech for text.
• I am highly opinionated, but only moderately educated, and slightly indignant.
• I brake for tail-gaters. 'Tis true.
• I brag about my children a lot, and when other parents don't, I wonder "Why not?"
• Moderation is not in my repertoire of prior experience.

However, you may not know that:

• I browse other people's blogs and wonder why I am not as fun, or fashionable, or talented, or motivated. I think that we all feel that way, but still feel slighted and unecessary.
• Pretty much all of my favorite people are politically conservative, Atlas Shrugged is one of the best books I have ever read, and I <3 a="a" completely="completely" dr.="dr." in="in" laura="laura" lesbian="lesbian" way.="way.">
• I long to have some sort of kitchy, stylish, up-cycled, mint-colored blog about all of Mica's newest clothes from Target and JT's latest fascination with losing teeth.
• Tomorrow, I will be her. My blog will be coral... or was it mint?