repeat after me...

"I was made to do great things." "I was made to do great things." This is what I had to repeat to myself nonstop like a broken record yesterday in order to get out of bed. If I literally left just one second in between repeating it, the heaviness was back immediately. The heaviness of this skin I'm in. The heaviness from physical pain that begins the lies that begins the depression and stagnancy. The heaviness from the fear that begins the brokenness that begins the hopelessness that begins the emotionless. THESE battles, these emotional battles far out weigh the pain I deal with. By far the biggest battle is in the mind. The lies are loud. I can not get by without speaking truth like I did yesterday, without constantly being submerged in Gods word, listening to teachings and trying to be who I KNOW I'm supposed to be even when I want to crawl back in my pit of despair. A pastor said recently to 'pour a mold'. Pour a mold of who you know you are to God. Who you are made to be. Even if you don't feel it at the time, pour your mold and go. Your heart will change. So yesterday I poured my mold. I know I'm made to do great things. Even though all I did was errands, it was everything to silence the lies and to conquer. I want to encourage you to do the same. STOP listening to the lies in your head that hold you back from what you KNOW you were made for. The lies that say you aren't good enough. Or that you won't ever accomplish it cuz you are a failure. Whatever it may be, shut em up man! We only have one life! Repeat the opposite of your biggest lie. My biggest lie is that I'm nothing. That I'm not made for anything. So my biggest pull, is to say "I am made to do great things." Find your biggest lie, pour your mold and show it who's boss.

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.