(Dictated to Mom on September 30th)
Last summer when I participated in the Children’s Tumor Foundation NF2 walk in Cincinnati, OH, I got on the website to register the team name. As I was looking through the other teams, one was named “NF Gets On My Nerves”. Maybe you have to have the disease to find that ironically humorous as I did! I still think it’s funny, but in all reality, my nerves really don’t as since the last blog post, they have taken a lot more pressure from the tumors.
It was just a few days ago that in thinking of this blog post, I really didn’t know what I was going to write. I get tired of telling everyone about my physical woes as if I don’t have anything else to talk about. I know it’s important to share so people are updated and know how to pray for me. My body continues to go down, but sometimes I feel that I’ve already said enough. There are always the physical changes, but over these past few weeks, I’ve experienced a state of mental and spiritual changes in dealing with the new level of nerve functions. At the same time, my body has been battling between the flesh and spirit. One night, as my dad and I were discussing my physical conditions, I found myself getting really frustrated and angry during some of our conversations. As Dad was giving me a hug that night, I suddenly realized that I was doing the same in my prayers and attitude toward God. I don’t think that I’ve ever had such a state of loneliness in my life before to where I was so angry at God I just couldn’t understand why things were happening to me, I’ve never been depressed before, but in some ways the attitude I had could have been so.
A lot of my physical pain now deals with having numbness that has now pretty much taken over all areas of my body. This isn’t really anything new, except for one thing—my breathing. The entanglement of tumors behind my intestine problems is obviously nothing new either as I had this problem for several years now. Over the past few weeks, what has been happening is more tumor pressure in my middle part of my spine. The tumor that is growing on the inside of my spinal cord at the base of my neck is causing pain when I breath. If you look closely, sometimes you can see my head bob because my heart is beating faster. I wonder this is a side effect of the tumor? In all of this, I also am experiencing some general “mishaps” here and there. Once, as I was spilling my capped water mug yet again, I cried out, “What do you want from me? Why am I still here?” I was so frustrated and at such a low that I told Mom that I was “done” and wanted to give up! I’m tired of being “brave” and taking the road less traveled—separated from my friends and family. “It’s not fair”, I cried. I was letting my flesh “win” even though I know I have the victory in Christ!
Often times at night, I wake up between 5:30 and 7:00 a.m. to use the bathroom. When I’m lifted back in bed, I started to fall asleep. Often Audio Adrenaline’s song called This Day comes to mind. The song talks about getting out of bed and starting the day with every breath of God. It’s sad to say that by the time it’s 9 a.m. (and transferring me to my chair)—I have long forgotten the song. I have learned a lot over these past few weeks since the last blog post. Most importantly, I’ve learned how significant every breath of life is—each breath may be full of pain, maybe in a small or big way. I know now that every breath is surely a gift. Some may say it’s a miracle—and maybe it really is. I don’t know, but I do know that as long as I am still breathing that I am here for a reason. That reason sometimes is just to pray to God—I’m still learning this lesson like every brush stroke. I feel the joy of what that breath of praise can really mean. Sometimes I still want to know “why” but I don’t need to ask that question anymore.
Thank you all for your continued prayers and encouragement because it makes my heart overflow with thankfulness. And a thankful heart is a happy heart!
Sung by Audio Adrenalin on the album Underdog
It’s six A.M
I’m so tired
The alarm sounds
And the new day begins
Before I go
And disturb this peaceful moment
I look to You
I want to say a prayer
Before my feet can hit the ground
Lord I give this day to You
I’m amazed how You forgive me
Yesterday seems so far behind
It’s a brand new day
And every day’s a new beginning
I look to You
And watch the day begin
I wanna watch the day begin