My NF2 Journey

This is just a rough draft of my story. Hopefully I’ll have a detailed one written later this year

Psalm 139:14 reads; “I will praise you, for I am fearfully and wonderfully made; marvelous are your works, and my soul knows very well. 

Really? Am I fearfully & Wonderfully made?

It all started with lots of dreams. My goal was to become a missionary pilot. I loved reading books about other missionary pilots since I was young and when those planes flew overhead, boy was I anywhere but on the ground. After I turned 16 I managed to talk my dad into letting me pursue my pilots license. It seemed like everything was planning out perfectly. I got my Private License at 17 and started getting serious about deciding to become a missionary pilot or not. Meanwhile I was losing my hearing. At this point I was completely deaf in one ear but had normal hearing in my remaining ear so it did not affect me much and I didn’t really think much about it. I started researching what exactly it takes to become a missionary pilot and discovered most ministries require you to have a degree as an Airplane Mechanic. So I started researching different schools and what all would be involved. Meanwhile I randomly decided I really need to get my ear checked out and figure out why I went totally deaf in one ear.

I forget the exact date but it was January of 2008 and I had an appointment with an ENT (Dr. Benke) For those of you who know him in Cleburne, TX. He checked my ear out and saw no problem with anything so the next thing was an MRI. I was already not fond of Doctors so of course I was telling my mom, “see, just like always, they always refer you to do something else and it’s a money scam! You know I don’t have anything in my head that MRI will find. I’m healthy!”

Approximately 2 weeks past when my parents broke the news to me. Little did I know how NueroFibromatosis Type 2 would affect my life. I started researching it and it just got to much so I quit. There currently is no known cure for NF2 and the medical route offers little hope. Early onset of death is not an uncommon thing with NF2 patients. You can read more under NF2 Journey for specific information about NF2.

I didn’t lose any hope for my dream of becoming a missionary pilot yet. We pursued natural treatment that MIGHT work and I had to go to a clinic for a month straight. During the month I was there I had an infection set in that we would not discover for many months. The treatment on top of the infection really got me down. Follow up visits to the clinic were just part of it-I spent several months in the clinic overall most of the time having this infection that we could not find at the time. Finally I was in too much pain all the time that all I could do was lay flat on my back and tough it. I could not get up and walk on my own for at least two months. Now things started getting real, I started struggling with what I thought was my purpose. I was getting weaker, I had lost almost any strength I had. We were doing blood test and nothing bad was showing-finally we tried seeing a back specialist because back pain is what I was struggling with. That wasn’t easy, I had to be carried out to a van and that hurt bad. We drove over an hour only to have the doctor come out to see me and say he will not touch me I have to see an Emergency Doctor. Well we knew we wouldn’t get far there because we were already seeing Doctors who could not find any issues. Finally an MRI report revealed a disc being gone-so I had discitis. After being admitted to the hospital It sounded hopeful that with some help on pain meds I could get back on top and get this infection finished off. While we were in there the Doctors got ahold of my NF2 situation and decided I had a life threatening tumor in my upper neck which called for a quick major surgery to remove two tumors. The risk on surgery was life or death-if anything went wrong, I would not come out alive.

Needless to say the surgery was very successful. In the 6 month path to recovery it was tough and of course I had tons of time to reflect. Let’s just say I started struggling with bitterness towards God-why did He chose to crash a dream I had that seemed like it was His dream for me. there were a thousand WHY’s I wanted answered. I could not understand how this scripture applied to me.

Psalm 139:14 reads; “I will praise you, for I am fearfully and wonderfully made; marvelous are your works, and my soul knows very well. 

I spent quite a bit of time on youtube listening to Christian music and esp Chris Tomlin which led me to Loui Giglio’s video about Laminin. This changed my life.

My questions to God were all wrong. I realized God has a very specific mission for me here on earth and if I just hang in there and follow Him I will fulfill that plan. I chose to believe that God was intimately involved with what I was going through and that He was actually intimately involved in my body with the pain I was going through.

As time went on I began to have hind site and see how God was using this in my life, He used it to wake me up from my own dreams and had to knock me down so I really start searching Him deeply to figure out why I was created. But I kept struggling with a few things about HOW I was created. For those of you who don’t know me I am partially cross-eyed and I just could not imagine how God could possibly have allowed that to happen for a REASON. but God wasn’t done with me yet, I was introduced to Nick Vujicic and little did I know it would be another life changing event for me. Nick was living proof to me that God created ME uniquely for HIS UNIQUE purpose but not only that! He created me with my disabilities ON PURPOSE so I could fulfill His purpose. He has a plan for everything. Since my surgery several years ago there have been many other instances where God seemed to crash my dream, including 2 weeks I had lost all my hearing thinking it was permanent.

I’ve talked a lot about my pain in my journey but my goal is not to take you on a pity party journey with me-I tell you those details because God used that pain, and that “crashing MY dreams” to get my attention and wake me up so that I could realize that I am Wonderfully & Fearfully made ON PURPOSE for HIS UNIQUE purpose that only I can achieve because of HOW HE created me.

I still do not know 100% what His purpose for my life is-but I’m on a journey that is so amazing that I would never be able to be on had it not been for that pain, had it not been for those dreams that were crashed, had it not been for that, I would be in a completely different journey not half as worth it.

My passion in all this is to somehow Inspire others to accept the way they were created, stop asking God WHY, and starting embracing Who God created them to be and the abilities He gave them. “Disabilities” become “Abilities”. Just look at Laminin-You think God isn’t intimately involved in HOW you are created and the day-to-day pains you go through?

Really? You ARE fearfully and wonderfully made!