IT'S A WONDERFUL(ly hard) LIFE!

December 2013

“It's a beautiful thing to see through the eyes
Of pain and heartache laid into the night.
You run from the darkness in this life,
But if you turn around you'll find
A little bit of light - a little light.”

This is an excerpt from a song I grew up hearing – lyrics written by Keith Moore recorded by Phil Keaggy, Copyright 1998 Bridge Building Music, Inc.

 Sometimes I feel like I was meant   for greatness other times I feel the exact opposite.

 I was born with Ataxia-Telangiectasia (or A-T), a rare terminal disease with no cure that limits my abilities.  If you care to learn about it please visit www.atcp.org.

 Because I was born with A- T my life has been blessed in many ways.   For instance:   If I didn’t have A-T, I wouldn’t have known so many wonderful, amazing, and talented people.  Such as Brad Margus who founded the A-T Children’s Project. (See link above) A-T has connected me to many inspiring people including my friend Tim Borland, a man who performed an amazing feat which was documented by my friends Brad and Deb Carr (FEAT: 63 MARATHONS IN 63 DAYS). This resulted in much funding and awareness for my disease. Through the ATCP, I have met some of my most treasured friends.

 Because I have A-T, I have been blessed with a more intimate relationship with my Savior. Through this disease, God has taught me to accept and admit I need His help.  He has also taught me to trust and lean on Him. Because I am disabled, God has shown me His love through many other treasured friends He has given me at Joni and friends family retreat/camp. For more info please visit www.joniandfriends.org/family-retreats.

On occasion have met Joni Eareckson Tada, an incredible woman of faith God has used to touch lives all over the world.  She helped inspire me to live me to live by faith through tremendous difficulty.  It was through Joni and friends camp that I heard of Nick Vujicic, an awesome man of faith who helped inspire me to write this blog.

A-T has become God’s miraculous restraint on my life because if I wasn’t born with A-T I might have not known my Lord.  That is a terrifying thought because without Him all is lost and hopeless. The thought of being without Him gives me shivers and is loathsome to talk about.  By giving me A-T God has kept me from living in darkness. 

 If I hadn't been born with A-T I could have done something great in the world’s eyes. Like be an Olympic gold medalist or a prima ballerina or even an actress. But it all would be meaningless without the Lord.  I think one of the greatest things that happened to me is God’s gift of A-T.  I don’t need to become great, I am great in the Lord’s eyes.  though it might not seem so at times, truly it is a wonderful life with A-T.

Aslan’s Eyes

I know its Fathers Day, but instead of giving praise to my adored earthly father I will exalt my glorious heavenly One.   This afternoon when we were home for the day, I took a nap. It happens often when I awake my mind goes like a mile a minute and it doesn’t seem to shut up.  This time as I awoke I thought  of the many places I would like to go/explore/observe and things I would like to see. I thought of being closer to my Savior because I sometimes doubt  my salvation. Before we got home, my mom read to us from a book by Joe Rigney called Live Like A Narnian, so that was in my mind also. I was thinking of how I was tired of living like every day is a struggle and just wanting to go home to heaven. I was thinking how I might like to visit a castle or a palace in England and I started crying because I know I will probably never make it to England. I prayed that God would draw me closer and I thought if God could just take me home I could see His palace. My tears turned into sobs at that point. I bit my lip to keep silent and try to stop sobbing. For those who haven’t been to my house, my room is painted like a forest and I have a big Aslan plushy on the ledge above my closet. My eyes rested on his face and particularly his eyes and I imagined I was in Narnia and Aslan was standing over me, gazing intently into my eyes and I was perfectly still. In that moment I didn’t care whether he would bite my head off, just knowing Aslan or my God was right there above me and I was still, calm in the knowledge that I was His. I stopped sobbing and lay there staring into his face for the longest time and I was at peace.  Thank God He is always there and I am His!

conclusion

Now that I have that figured out, I want to make sure I have the right heart to serve my Master. It’s hard to submit to His will and purpose every day, especially when He gave me A-T to deal with.  I should be grateful and rejoice that I am alive, not complain about my circumstances.  I should be thanking Him for each day He has given me.  So to anyone who reads my silly blog, I ask for your prayer that God grants me the heart of His servant every day.   

Duhh!!

Duhh! I feel so stupid sometimes! I rediscovered God’s plan for my life. Here I was, trying desperately to find something colossal to do for Him and He’s telling me to trust Him, be still, put all your ambitions aside, and hang in there! What I have known all along and have been afraid to realize is He wants me right here, living in Wheatland with this abomination of a disease and having the courage to reach out to others in need. That’s SO not what I wanted! It is His will and I want His will. It’s like I have been fighting with Him all this time and He finally got through to my soul. To catch my drift, I think my struggle with Him is best described in this song by Tenth Avenue North called “By My Side”.

Why are you striving these days? 
Why are you trying to earn grace? 
Why are you crying? 
Let me lift up your face 
Just don't turn away

Why are you looking for love? 
Why are you still searching? 
As if I'm not enough? 
To where will you go child, 
Tell me where will you run? 
To where will you run?

Chorus:
Cause I'll be by your side wherever you fall 
In the dead of night whenever you call 
Please don't fight these hands that are holding you 
My hands are holding you

Look at these hands, at my side 
They swallowed the grave, on that night 
When I drank the world's sin 
So I could carry you in 
And give you life

Chorus:

Here at my side wherever you fall 
In the dead of night whenever you call 
Please don't fight these hands that are holding you 
My hands are holding you 
And I, I love you 
And I want you to know 
That I, I'll love you

https://www.youtube.com/watch?v=CdjRmM0Q0qs  

Go Figure

I finally figured out my calling. Even though I might not be called to travel :( I believe that I was born to serve the Lord by serving others.  
John 13:14 “ If I then, your Lord and Teacher, have washed your feet, you also ought to wash one another's feet.”
 Matthew 25:37-40 Then the righteous will answer him, saying, ‘Lord, when did we see you hungry and feed you, or thirsty and give you drink? And when did we see you a stranger and welcome you, or naked and clothe you? And when did we see you sick or in prison and visit you?’And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me.’
These passages of scripture make it clear to me this is what He wants me to do wherever He wants me. I think I have always known I just needed Him to reveal it to me. In Genesis 4:7 Jesus says if you do well your countenance will be lifted. It is a joy for me to serve others; it gives me purpose and peace of mind.  Knowing, following and serving my Master gets my focus off myself.

On a Mission?

Most people don’t know this about me but I can’t hide it any longer. I have always wanted to go on a mission trip. I want to do more ministry. Blogging is a ministry to me, but it isn’t enough. It is like it says in Genesis about Cain giving what he wanted to the Lord instead of what the Lord wanted him to give. I want to blog—I enjoy it. In my first post I told you I was blogging for ministry purposes. That is true. But I feel like it is not enough. I feel like the Lord wants me to do more than I already do.

I keep going back in my mind to some song lyrics from Beauty and the Beast. In “Be Our Guest”, it says,

“…Life is so unnerving for a servant who’s not serving. He's not whole without a soul to wait upon. Ah, those good ol' days, when we were useful! Suddenly, those good ol' days are gone. Ten years we’ve been rusting, needing so much more than dusting, needing exercise—a chance to use our skills…”

That is so true for me. I feel stagnant, like I am not serving.

In some ways, I almost feel like I am running from God like Jonah. I have been scared to face what the Lord wants me to do, not that I know exactly what it is. But maybe I wasn't willing? Now, in the belly of Wheatland, I want nothing more than to travel. There are so many places I would like to go, but I do not know where the Lord wants me. I am still scared, but I want to obey. I would even go overseas if I had to. Going to a different country sounds interesting and adventurous. It sounds so much fun to learn a different culture.

It seems not too long ago my father was a missionary to Russia. I always wanted to go there, but it seemed like a place that wasn't really accessible. How could I be there? Where would I stay? When my father was there, he would tell the Russian Christians about me and they prayed for me. Because of this, I have friends in Russia who I haven't even met in person. I am friends with people like Svetlana who was a Russian translator. She came to my 21^st birthday ball. She worked with my grandfather before he passed away when my grandfather and father taught in the churches in many different places in Russia. Some of the Russian people used to send gifts back to me with my father and now I support a boy in Russia through World Help.

Wherever the Lord tells me to go, I will be glad to follow. I feel like I would be happier in Jesus if I were able to better serve Him. I feel like I am meant for this. I pray that He will give me an opportunity?

Of Hearts and Rings

Sometimes Disney makes me mad. One major theme in the Disney world is “follow your heart”. They make that seem like it’s the best thing for you to just believe in yourself and trust your heart to guide you to every happiness. In reality, that belief is pathetic and depressing. Here's why: the Bible says in Jeremiah 17:5-10,

Thus says the Lord:
Cursed is the man who trusts in man
and makes flesh his strength,
whose heart turns away from the Lord.
He is like a shrub in the desert,
and shall not see any good come.
He shall dwell in the parched places of the wilderness,
in an uninhabited salt land.
Blessed is the man who trusts in the Lord,
whose trust is the Lord.
He is like a tree planted by water,
that sends out its roots by the stream,
and does not fear when heat comes,
for its leaves remain green,
and is not anxious in the year of drought,
for it does not cease to bear fruit.
The heart is deceitful above all things,
and desperately sick;
who can understand it?
I the Lord search the heart
and test the mind,
to give every man according to his ways,
according to the fruit of his deeds.

The point behind these verses is this: the person who trusts in himself is headed for miserable failure, but the person who trusts in the Lord will be blessed!

As a teenager I knew that the Bible said that following your heart was the wrong path, but I wanted to prove to myself and others that I knew the truth and trusted the Lord with my heart. So here is what happened to remind me to trust in Him. When I was 17 years old my parents graciously bought me a ring—not just any ring, but a bride of Christ ring. Maybe you have heard of it? It’s almost like an engagement ring. To me, it’s like pledging my life away to Jesus as if I am a bride of Christ. It is proof of His love for me and my dedication and love for Him. It is also a great reminder that my heart and future are safely in His hands. If I ever worry, I remember my ring and I am at peace, or should be!

We're all tempted to trust in ourselves at times. But we need to remind ourselves to trust in the Lord and whatever happens is in His loving hands.