Observe

Suffocated by
the waves of monotony
Crashing down over me
The shadow stretches far beyond
the ever spreading reach of Imagination
I am enveloped
My breath escapes and
I reach out!
toward what I hope
is the shore
I fight!
Until the void smothers
my stifled scream and
the salty water rushes in
Crushing my heart
Saturating my mind
With the sting of salt
Purified
The stone where hunger
once lie now cold
Metallic and bitter
I sink
The surface ever further away
Moonlight filters down and
my eyes are wide open
I breathe and
Observe.

Right now...

Infused

Iron drips and slinks deep into my veins while
those around me suffer through intravenous poison...
I prefer mine orally...
Later I'll scrub, wash, cook, organize, and rear...
But now I sit, swaddled in a clinic...
Content.
Alone, as usual.
Apologies fall like hail, pelting my dignity as I feign detachment from those who care not...
The pages of my book flutter along as I devour the world I've never seen beyond the bind...
Off tune 90's radio lilting through my mind...
Mouths move around me, eyes caught, awkward smiles and avoidance...
What's so funny?
Don't worry about it...
I'll tell you later...
Always put the greater good first,
Who decides what is good and
When is it my turn...
I'm selfish, self centered, and guilt ridden by self derision...
Filthy, crumbling, decaying tiles pave every beautiful room I leave...
Mumbling doctors and exhausted nurses the only witnesses to my purgatory...
Carve a smile on my tired face
Paint on beauty
Washes down the drain with...
Clumps of hair and...
Chunks of mascara and...
Memories that serve only to distract.

Acceptance and Closure

For the last 5 years of my short life the third weekend of October has meant just one thing to me, serving as Team Captain of the NF Endurance Team at the Long Beach Int'l Marathon. If you are a long time friend, you may be surprised to read those words without them being highlighted in yellow and followed by a seemingly preposterous amount of exclamation points. You have probably just now realized you haven't recieved any emails or social media alerts from me encouraging you to join us, to get off the couch and on the course, or to consider monetarily supporting the Children's Tumor Foundation in quite some time. I have recieved numerous emails from team mates and supporters asking for this year's plan. I kept saving the emails into a folder to respond to once I had a better answer, but no answer ever formed... The truth is, I simply do not have the energy and stamina to participate in an endurance event anymore... I have not deluded myself into believing anyone was waiting with bated breath for me to finally address this issue, but I feel the need to specifically respond as a form of self-acceptance... The fact is people with NF get sick. We get really fucking sick. We don't fundraise for kicks, we are terrified to be the next person on the NF Memorial page. It is why we see so many NF Moms doing the leg work, literally, because a lot of us just can't run. I have been upset about not being able to participate in the NF Endurance Team for quite a while now, and enough is enough. My life is filled with joy and beauty, and so rather then lament my inability to continue on one path, I am saying a fond farewell and finding another. To every single one of you who have donated in my or JT's name, shown up to cheer, run or walk for us, been a teammate, a friend, a supporter... Thank you. Being a part of this team has been the motivation I needed at some of my darkest moments. When I felt helpless, it gave me an avenue to fight for myself and my son. I loved every second of it, and this Sunday when the Long Beach Marathon happens without me there in bright yellow for the first time in 6 years, I will try to simply be happy for the memories in my heart. To each of you who contacted me and went unanswered, I apologize. I am still here, and will continue to be a part of the search for a cure in any way I can for as long as I can, just not through running. To those of you still on the course, run strong friends, be grateful for every step you can take, and NEVER GIVE UP.

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.