I have won

There's something to be said of standing on the shore. The place where the unknown meets the known. Where vast meets the limited. Where wide open smacks you in the face in the most beautiful way. Begging you to claim a wilder and deeper freedom. The ocean, a reflection of my eternity. Deep and wide it pulls me in like the tide pulls at the sand. Wetting it, just a kiss, a promise of belonging, a promise of forever. This life. Oh this life. I'm so torn every day. All of my idiosyncratic personal losses and pains, when I bring them before the ocean, it's just like the foot of the cross. The tide comes in and takes them away. I can not help to bring my lot to these sands, or anywhere that puts them in front of the lens of heaven. Anywhere that lets me see them in Your light, juxtaposed to your magnificent ability and power. At your feet Jesus I learn all I would ever need. I am not made for this earth. My human eyes are so limited, my mind so small. But when I stand here, my hope matches this endless horizon. It reveals how eternal I am. When I place my pains before you now they meet their end, they become as a single grain of sand and lost against this all consuming scene. When I am here, what more could I consider than Your astounding glory before me. Here is where my hope is found. This is why no matter how many grains of sand my life permits I have won because of my eternity with you. If death allows me to come face to face with you, then how is it my end? If anything it sounds like my beginning. PC: @noelleolmstead #tumorhater #tumorsfordays #neurofibromatosis

"I have NF just like you!"

This is my purpose that exceeds my pain. This is why I push through pain to make these capes. This is why my tumors and the issues they cause is "well" with my soul. When I told this little chicka that I have NF just like her. Dangit, tears are filling my eyes as I re-live it. The look that she gave me, I swear to you...I saw hope. I saw peace. I saw joy. I saw comfort. I knew that I had to give her one of our capes, so when I got a donation, I used part of it to pay for her cape. When I showed the cape to her she jumped and squealed and shook her fists with excitement and then ran at me with the sweetest hug. This is the life man. To fill these kids with joy and be able to relate with them. And then to fill their parents with hope as they learn about my tumor-ey journey yet see how I live is both humbling and inspiring. I absolutely love my LA neurofibromatosis family. Tomorrow I am meeting with the guy that is the head of marketing in the New York headquarters office for the children's tumor foundation to talk about working together in a more constant and larger scale way. I am unbelievably excited for the opportunities that this could bring. Pray for that if you'd like but could ya please share in the joy that @tumorhater raised $1,232?!?! And that I felt well enough to do the event yesterday? Also, how cute is her face!?!?!?! The way she is looking at me is just killing me. Also also, don't forget to follow tumor hater and to spread word so we can raise more funds for our heroes! Order any of our items at tumorhater.org thanks friends!!

Oh Nelson Mandela...ya did it again.

"There is no passion to be found in settling for a life that is less than the one you are capable of living." - Nelson Mandela
As I daily have to silence these awful lies that I hear the enemy screaming at me just in order to get out of bed...this hits home big time. I know that if I choose to push hard for it, if I dare greatly and keep saying 'yes' DESPITE my circumstances that The Lord would blow me away with what my fullest potential truly is. Guys, we are so capable it's nuts. We can do such hard things. Don't believe the lies you hear in your head! Don't let fear of failure stop you from trying. Blow your own dang mind my friends. At the end of your life...don't let yourself have the regret of not taking risks or following your heart. I urge you to take your life and Dare Greatly, we only have ONE LIFE. Let's USE IT!!! p.s. My 'Dare Greatly' top along with another grey unisex one can be found on tumorhater.org 😉 (PC: @addi_black) #tumorhater #tumorsfordays #neurofibromatosis

tumors, paresis and infections 'Oh my'!

The past few weeks have brought a lot of insight to my breathing difficulties that I've been having for a few years. At Stanford they discovered that my diaphragm is partially paralyzed. The diaphragm is responsible for 80% of lung function, so clearly my diaphragmatic paresis is gonna make breathing harder. Also, I've had bacterial staph/psuedomonas infection somewhere in my airway for the past few months. I've been on antibiotics but the bacterias are still there. So I was referred to a pulmonologist to decide what the next step was. She ordered a stat ct scan, antibiotics, a vibrating vest and another device that will both help break the junk out of my lungs, and then she asked if I ever was tested for cystic fibrosis. 😳 And no, I haven't. So fast forward till now, I have been informed that both bacterias have colonized in my lungs, and that the tumors in my lung cavity are stable. One shows that it is in the pleural space of my right lung (which is like the little pockets in the lung lining) but still I think that needs to be made sure of. Also, if this round of antibiotics doesn't work I will have to get a port placed and get IV antibiotics for a couple weeks. If THAT doesn't work she thinks I for sure need to be tested for cystic fibrosis and that I will probably then have to be admitted and get more intense treatment. These bacterias can get into your blood stream and then become something faaaar more serious. I had no idea till now that there is apparently atypical adult onset cystic fibrosis. She also is gonna have me do another pulmonary function test as well as a sleep study to know even more. Please pray these antibiotics work and that I won't grow more sick. No pneumonia, no cold, no nothing. I have been feeling more tired than normal lately and have repeated bouts of feeling something coming on but it never fully develops. #tumorhater #tumorsfordays #neurofibromatosis

The Thorn

"I stood a mendicant of God before His royal throne
And begged him for one priceless gift, which I could call my own.
I took the gift from out His hand, but as I would depart
I cried, “But Lord this is a thorn and it has pierced my heart.
This is a strange, a hurtful gift, which Thou hast given me.”
He said, “My child, I give good gifts and gave My best to thee.”
I took it home and though at first the cruel thorn hurt sore,
As long years passed I learned at last to love it more and more.
I learned He never gives a thorn without this added grace,
He takes the thorn to pin aside the veil which hides His face." by Martha Snell Nicholson A friend shared this poem with me a while ago and I have read it over and over since. That last line just makes my heart a pile of mush. The words couldn't be more true. The more I let go of the idea of 'good' and 'bad' according to human standards...the more I dive into a holy separation between body and soul and see that yes indeed, that very thorn that has given me so much anguish has also opened the floodgates of grace, mercy and so much more. As hard as it has been, I wouldn't ever trade my pieces of heaven with never having faced any thorn.

Why?

Oh Mr. Lewis what I would give to have been your friend. This is everything. One of my favorite pastors said in a recent teaching "if God was small enough for us to figure out, He wouldn't be big enough for us to worship." I have learned that asking 'why' doesn't gain me the peace I'm searching for. I only gain peace as I learn about Gods character and His gigantic love for me. Even though I trust God with every bit of me and I want to be used by Him more than I want a properly functioning nervous system, right now I'm struggling. I hate that my heart that is so filled with faith is caged in a body of flesh and human thinking. My spirit is so so willing, but my flesh is so aggravatingly weak. Why can't my faith silence my fears before I feel them?! Isn't my faith stronger than this ever growing weak flesh of mine? I leave for Stanford Wednesday morning to see a pulmonologist that specializes in people with neurological issues. I want to know so badly what is going on with my breathing but at the same time I fear it. These results shed light on how advanced my nerve deterioration currently is. I wish that I could run away from this but I know I need to face it, and I know I am not alone. Thank you guys so much for your incredible support, love and prayers that you are always so willing and eager to give.

siblings

Siblings are incredible things. Nobody "gets you" like they do. They grew up in the same house. Raised by the same parents. They have also first handedly gone through every family trial and celebration that you have.
I am so lucky to have a bond with my brother like I do. We both have similar struggles and complexes we have similar joys and humor, we just get each other. Joel has come down to the Bay Area for both of my major surgeries and has sat on those beds with me to help me through the first pains of recovery. To distract me from my INSANE bouts of vomiting and nausea he placed his hand on my back and just slowly moved it side to side. It helped keep my heaving at bay. I don't know where I would be without my brother being by my side in life. Without him advocating for me and believing in me. Sure, we can drive each other more crazy than probably anyone else can. But I think that is mostly because we both believe in the other so much. After losing our sister in high school I see the value more than ever of having a sibling. Cherish yours, cherish that bond. If it is lost, try to rekindle it. But at the very least, love yours. Love yours. Love yours.

darkness and light, fear and freedom

Yesterday my mind was overcome with defeat when just the day before I felt unstoppable. I swear, my emotions are like the Spring time weather of my home town. You really never know what you are gonna get and when its gonna turn from sunshine into storm clouds. With this being the forecast of emotions in my life, I notice that I tend to only be transparent with others during the sunshine days; only after I've made it through the darkness. That it's only then that I feel I can be inspiring, that it's only then my pains have purpose. I am working on finding the confidence or whatever it is that I lack in order to express just how dark it gets behind this skin, behind these tumors, behind all the lies the enemy throws my way, especially when I believe them and especially while I am currently within that darkness.
I admit that today I've shaken off some dark and though I'm not fully in the light, I am headed towards it. Proving again that the light is my safe zone for authenticity. I know how to look at and express my heart when I'm in the light. I even know how to reach back into the dark and speak of its weight. But in the darkness, it is far too dark to feel safe in the wandering. To feel secure as I seek out the pains of my heart and sort through them to decipher what it is that shackles and drowns me. It feels unsafe to let my feelings be all on the table to be seen and heard by others, let alone my own self. So I hide by distractions and wait it out till somehow light comes again. I know that I can get by with living my dark hours this way. But I also know that if I wrestle in the darkness with all that makes it dark, no matter how dark and heavy it becomes, that the days I'm in the light will ONLY be brighter. And today as my soul is in the state of dawn breaking, half way still in the dark, half way taking in the light...I know deep inside of me that no matter what darkness lays over me, that the only thing that is within me is this light. This is what I was made of. This is what I was made for. This is God, it is the Holy Spirit within me.
So maybe next time as darkness surrounds me just like these blankets do now, I will take my light and not fear to look at and wrestle the dark. Maybe I will find healing as I navigate authenticity while in my darkness. Maybe I will know that darkness does not prove my defeat, but only my humanity. And in that humanity I would reach for the connection we all long for. That however intimidating the darkness is, that it is only that...'intimidating', and that I am made to have victory over it. Just like any sealed area of space, darkness is only allowed until light is let in, for darkness is always in submission to light. I believe that darkness is only like being under the blankets at the brightest time of day, dark and confining for those that lay beneath but just on the other side is the newness of day and the freedom we were saved for.

worthy

Who doesn't like to go exploring and who doesn't like to be made all pretty? Well, I do. And so do my friends @addi_black and @brookelyn_marie, so off we went! I've got to tell you, I've grown leaps and bounds in my self esteem with this trach. I still notice that I compare myself to other women. Their necks so stinkin flawless, their eyelids sitting evenly. But something I feared before we left this day is that I would feel horrible in front of the camera, that I would feel like I looked ridiculous. That I wouldn't look beautiful because this trach would take away the delicateness that as a woman I want to hold. But to my surprise, I actually forgot all about my trach. And even now looking through our photos I barely even notice it. I am LEARNING that I am worthy of being called beautiful just as much as anyone else. And this trach doesn't take away my delicateness, it actually reveals it in a whole new way. I am proud to say that this is probably one of my all time favorite photos...I am proud of that because it doesn't hide this thing that tempts me to feel SO MUCH 'less than'. It is in clear view. I hope to continue to grow in this area not only in outward appearances but more importantly in the ways I am insecure emotionally and socially. I encourage you all to accept your details and not to call them flaws. Dont hide the things that seem like they will hold you back. Use them to fuel your drive. The very thing that logic tells you will make you weaker may be the catalyst you've always needed to get you where you need to be.