“This Is Now The New Normal”

   

              This devotional is written in loving memory of my father, Rex Benson, who passed away on January 27, 1995. This year marks 15 years since his .  He's the man who said, "This is now the new  normal" when I was born.  This is one of the last pictures I have of him before he died.  We're packing up to go home from our ski trip at Lake Powell in Utah.  That's me on his shoulders at 11 years old.  What a great time we had! This Thursday marks sixteen years since his death.  What a loving father he was! Dad, thanks for treating me like a normal kid! I love you and  I miss you!

 

I was born on February 8, 1983.  My mother couldn’t bring me home right away because of complications at birth. Originally, I was supposed to arrive on April 8, but due to lack of oxygen supply to the brain, doctors had to get me out quickly. I was two months earlier than expected.  No one thought I would live.

             My mother often tells me that my father was the one who set the tone for how the family would handle my disability forever. The minute my mom and dad got a positive report from the doctors that I would live, they also told my parents that I would have to see lots of specialists so that they could closely monitor my condition—whatever it was.  I wasn’t diagnosed with Cerebral Palsy until I was three months old.  Shortly after I was born, my father said, “This is now the normal.”

             He meant that it was going to be normal for our family to go to 10 different doctors, I would go to physical and occupational therapy on a weekly basis, that was the way our life was going to be.  That was okay.  His strong leadership is a huge part of what shaped my character today. Thanks Dad.

Reindeer Games

I'm playing reindeer toss at Fun Life! I'm the one on the very end!

The Last Place You Look

I

I’m into scrapbooking, but the limited dexterity in my hands makes it difficult.  Someone else has to put the pictures in for me. Recently, I found something that I thought I lost for good.

It was an e-mail from someone named Renee Bondi. She was also in a wheelchair.  She came to speak at a Joni and Friends family retreat.  I e-mailed her because I wanted to thank her for allowing me to talk to her for a while recognizing my need for help. We talked about my frustrations with my aides at home in my day program and wanting to live on my own. After I e-mailed her, she replied back with some advice.

I was so excited, that I printed it out so I could save it and put it in my scrapbook.  I put it on the very bottom shelf where I thought it would be safe. So many different people had been coming in and out of my room helping me with things that it somehow got moved. I went to grab the letter, but it wasn’t there!  What happened to it? I thought.  I had my aides tear my whole room apart looking for it. It’s gone. I thought. I was almost in tears.   

            I started blaming my disability.  If I could do it myself, this wouldn’t happen.  I had forgotten that the last aide who helped me with my scrapbook put the letter in the back of the book. I looked there but didn’t see it.  I was in deep despair.  The response back was unexpected. That was pretty special that somebody would take the time to do that - somebody who had been there - who really understands what I’m going through. It’s priceless.  Now we’re friends.  She’s in my prayers.

The aide flipped through the pages and there it was at the back of the book! When I saw it I said, “Thank you Lord!” At least now I know where it is next time I want to look at it. 

My letter was in the last place I looked.  Isn’t that just like us? Searching high and low trying to find the right direction to go and it’s right under our noses.  All the answers are right there in the Bible yet that seems to be the last place we look.    We don’t cry out to God until things get really bad. Then we say. “Lord, where are you?”  Just when we think He has left us, the Lord says,  “My child I’m right here!” Then we run to Him. If we ran to Him in the first place, our world would be in a lot less pain. He’s waiting for you with open arms. Will you run to him?

Dear Lord,

Help me to make you the first one I run to.

Amen

                                                               

                                               

             

From The Heart

Here's some poetry I wrote when I took a writing class through the U.C.L.A. extension program earlier in the year. Many of the poems reflect my true feelings about my disability, as well as give you insight into some of the activities I do. Enjoy!

Adventures in a Wheelchair
The Beach
Clack , click
Hand on my joystick.
I leave my room.
Zoom zoom zoom .
Heading for some way out where on into the ocean air.
I wish I could fly.
Fly high in the sky.

Skiing at Big Bear Mountain
Look at me go so fast in the snow.
Moving left and right with ease.
The use of my arms instead of my knees.
“Look at me” I say.
Filled with such glee.
I can do it myself.
I only need me.”

First Grade- Why can’t I?
Everyone else is learning to write.
Something doesn’t seem quite right.
My hands are taking flight.
Why? Why can’t I write?

Horse back riding
I jump on the horse and for the course.
As the horse goes around,
I have to make sure to not land on the ground.
The horse looks down as he hears a new sound.
“Come on horse stop fooling around.”

The pool
I go into the pool .
Where it is nice and cool.
I could stay there all day.
It’s like freedom today.
I swim like a fish.
Move as I wish.
I don’t care bout turning blue,
I’ll stay there til day bids Adieu.

Christmas In Heaven

Heaven is s a place where everything is perfect and we’ll be reunited with Jesus and our loved ones who were believers. Have you ever wondered what Christmas is like in heaven? The Bible doesn’t tell us, but I’ve found myself pondering the question a lot the past couple years each time Christmas rolls around. 

On December 3, 2007, my Grandma Benson died at the age of 78 of a massive heart attack.  Christmas Eve was at her house.  One of my favorite Christmas memories with Grandma is baking cookies. We made two kinds.  We made sugar cookies with different cookie cutters. We also made peanut butter with Hershey’s kisses in the middle.

Everyone would be around the table talking about how the year had been for everyone and Grandma Benson would be right next to me.  She would sprinkle the dough with sugar and then roll it out.  I would pick up a cookie cutter, she would help me line it up, and then I would press the cookie cutter into the dough.  When we couldn’t fit any more cookies on the dough, we’d scoop them up and put them on a cookie sheet and get another one.  We’d be at it for hours.  We’d make jokes, we’d laugh, she’d ask me how I was doing in school, etc.  It was a good feeling to have Grandma right next to me. We made Christmas cookies this year for the time in years. For the first time, Grandma wasn’t there. 

The thing I love most about cookies, or anything freshly baked is the smell as it’s in the oven! I also love the warm mouth-watering taste it gives my stomach on the inside because it’s so warm. Grandma was such a servant. When she didn’t have anything to give, she gave. I like to think that she is standing alongside Jesus right now preparing a feast for everyone there. I like to picture heaven like a huge bakery.  I can’t wait to share cookies with Grandma in heaven.  The best part is in heaven we won’t have to worry about calories because there won’t be such a thing. Since heaven is a place where everything is perfect, we’ll taste the best cookies ever made!  See you in heaven Grandma!

The Cardboard Testimonies

 Some days, I long for my heavenly body right now.  Recently, I went to a fundraiser for Young Life.   They asked a group of us to give our testimonies of how Young Life had impacted our lives.  They had us put it on pieces of cardboard.  On one side, we put what our life was like before we came to Young Life.  On the other side, we put how our lives were affected after we came to Young Life. On the front, mine said: “Burdened.” On the back, it said: “Safe and Understood.”

We were doing a rehearsal.   They didn’t have a ramp, so I stayed down in front. While everyone else practiced going on stage, I stayed behind with one of the leaders and practiced turning over a piece of cardboard.  Every time I tried, I either turned the cardboard upside down, or I kept rotating the cardboard- Why is this so hard? I thought.       The leader reminded me that there was a great reward for me in heaven. She was right, but all I could think was, If only I had perfect hands, I would be able to do this. We decided in the interest of time that my leader would help me flip over the cardboard. In those moments when we long for heaven, remember that Jesus walked the earth. I’m sure He longed for heaven many times.

Dear Jesus,

Help me to keep my eyes focused on you.

Amen

Hunt for Heaven

Here's the book cover for The Hunt for heaven. I can't wait to see the other pictures!