Westley has been diagnosed with Duchenne Muscular Dystrophy.

Archive for July, 2011

CAMP ROCKSTAR

Many of you have asked about Westley’s camp experience and the only thing I could say is I know he had a blast. When I asked him his favorite part he told me “everything” and a month later I am just now starting to hear him tell me little stories. Since I wasn’t there and I couldn’t get enough to blog about from Westley I asked his fantastic camp counselor if she wouldn’t mind writing something for us and boy did she!!!

I hope you all enjoy the read just as much as I did. Thanks Jen!!!

 

Hi, I’m Jen and I had the pleasure of being Westley’s counselor at MDA camp.  We shared a cabin with 3 other little boys and their 3 female counselors.  We had a 5th counselor assigned to help us during the day and she was invaluable.  Our cabin, Pamplin 17, had the youngest campers.  All the older kids looked out for our boys and thought they were all adorable (which they are).  We had a very active week with a lot of very late bedtimes, yummy junk food snacks, and the craziness that can only come from a room full of 4 boys.  Our boys got along well.  Westley was quick to share his inflatable guitar when a boy was homesick, and quick to join in the meal time laughs.  All the MDA staff and volunteers were wonderful.  Service organizations, a Harley Davidson club, and Firefighters came to cook our meals and help with activities.  All of us volunteers were fortunate to spend the week being crazy with cool kids.

 Our room had 4 bunk beds, a sink area, and a bathroom with a shower.  Besides all 8 of our bags, we had our stack of board games, a horde of water guns, a power wheelchair, Westley’s scooter, and 2 manual wheelchairs to fit in.  It was a jigsaw puzzle getting the room ready for bed so we could still get around the room.  As someone who can’t parallel park a car, I was in awe at how Westley could maneuver his scooter through tight spaces.  It was fun watching him figure out how to safely weave between scooters and power chairs in close quarters- I could count on him to work out a pathway that I could follow.  I got a workout running after his scooter all week as he raced around camp!  Being the young gentleman that is his, he would always circle back and drive slowly to accompany me when my legs burned too much.

From the moment we woke up to pots and pans banging and the yell of “Wakey Wakey Eggs and Bakey”, our days were packed.  Everyday there were activities to do, including fishing, crafts, paddle boating, canoeing, and afternoons at the pool.  We wrestled inflatable sharks and teamed up for water gun battles at the pool. Westley and I went paddle boating twice.  He was too short to reach the pedals, so the first time he turned to me and said “I’ll steer and you can pedal, okay?”  He was great at steering- we never ran into anything! 

The camp theme was Camp Rockstar so each day had a different musical theme and a special evening activity.  Unfortunately the evening activities didn’t start until 8pm so we had a very tired cabin by the end of the week.  Monday was a Justin Bieber pool party, complete with a DJ and a magician making balloon creations.  Luckily they played more than just Justin Bieber songs as Westley and I weren’t big Bieber fans. 

Tuesday was Country themed, with horses to ride, a petting zoo, and a carnival at night with cotton candy, sno cones, and games.  Westley dunked so many firefighters in the dunk tank that night that his wrist was sore at bedtime.  We also rode a motorcycle—Westley in the sidecar and I was behind the driver.  We got a tour of camp and almost got chased by a pair of geese who thought they owned the camp! 

Wednesday was a Glee dance at night and color wars during the day.  The camp was split by cabin into red and blue teams and competed in games, water balloon launching and relays for points.  We had a disappointing morning because Westley’s scooter shorted for the second time and this time there was no loaner to use until after lunch.  The silver lining was getting to ride around in a golf cart, something that Westley had been longing to do every time one drove by.  He rallied for the minute to win it games and volunteered for many of them.  They were hilarious to watch.  In one, he tilted his head back and had an oreo on his forehead and had to move the oreo to his mouth by moving his eyebrows and mouth.  In another, he wore a pair of pantyhose on his head.  One of the legs contained a baseball and he had to knock down water bottles by swinging the baseball with his head.  In the afternoon at the pool, Westley competed in a challenge to find a skittle in a whip cream pie using only your mouth.   Unfortunately, Red team did not win. Wednesday night we had a dance.  We made s’mores in a microwave, ate candy bars and popcorn, and wore glowstick necklaces, bracelets, and crowns.  After getting hold of inflatable guitars and recruiting friends, we played air guitar to the music, head banging and all.  We also did the cha cha slide, both in the scooter and out.  Perhaps my favorite moment of the week came during the dance.  Westley leaned over to me and sighed “I don’t have any party left in me.”  I asked “Okay, do you want go?”  He looked at me with big eyes and shook his head “No.”  “Do you want to stay?”  He again replied “No”.  So I asked “What do you want to do?” “I don’t know…” he sadly stated.  We decided to stay 10 more minutes then go, but he was fading fast.  I came back from throwing away our sodas and he was turned, leaning against the back of his seat, his head on an inflatable guitar like a pillow, eyes closed.  Needless to say, after that we went back to the cabin to go to bed!  

Thursday was Rock and Roll themed, with a camp scavenger hunt in the morning and tie dying tshirts.  4 people from the winning color wars team got to whip cream pie any adult during dinner.  Our boys were very disappointed that they didn’t get to pie anybody that the MDA staff decided that due to their adorableness, they too could choose someone to pie!  Thankfully Westley did not choose me!  He pied Hans, one of the entertainment directors who woke us up every morning.   After seeing a monster trunk in the afternoon and doing some art, we had a camp talent show.  To understand our cabin’s act, you need a little background info.  During mealtimes, the people who made our meals were called onstage and have to perform a dance like the hokey pokie, or the chicken dance.  If they perform the chicken dance, Hans throws rubber chickens of all types at them during the dance.  Our boys loved when this happened and really wanted to throw chickens too.  Thus, the talent show act “Have you ever seen a chicken fly?” was born.  With the chicken dance song playing, the boys stood onstage, 2 per side, and threw rubber chickens across the stage until they ran out.  These are no ordinary rubber chickens—some had bathing suits and pirate costumes.      

Friday morning dawned with the exhausted boys sleeping through a quiet wakeup call and Westley asking if he could stay another week, hiding when we saw his parents coming.  Of course, once they arrived he was thrilled to see them!

I feel very blessed to have met Westley and have been wearing my Westley’s Warriors orange wristband since his parents gave it to me when he arrived at camp.  He is mature for his age and liked hanging out with the 9 year old in our cabin and older boys playing Wii.  At camp, Westley had a chance to do things he didn’t know he could do like martial arts and horseback riding.  It was powerful to see him overcome his hesitation and fear to try something new and succeed. Something I love about Westley is that while muscular dystrophy is a part of Westley like his blue eyes and his smile, it doesn’t define who he is.  He is a sweet, kind hearted boy with compassion for others and an easy going attitude, qualities that made him a joy to hang out with at camp.  Westley has a special place in my heart — his warrior spirit inspires me to be brave and strong, his thoughtfulness affirms my faith in the goodness of people, and his joy in life is contagious.