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.