Victory Junction Gang Camp TMA Retreat Weekend, November 2006

Pauline and I boarded the connecting flight from Cincinnati to Greensboro.  It was a small commuter plane and we were sitting two rows behind the bulkhead.  After all of the passengers were seated, there was some commotion at the entry way.  It was pouring outside.  As it was a small plane and there was no jet ramp, people had to board using a stairway.  Two young people were struggling to carry a woman into the plane in a wheelchair.  The three of them boarded the plane soaking wet and then transferred the woman into her seat in the bulkhead.  The beautiful woman who boarded was a full quadriplegic and had very stylish streaks of turquoise-blue hair.  My immediate thoughts were, they’re coming to Victory Junction, and I bet my hair would look really good like that.  The young man she was with began looking for some room in the overhead storage compartments.  He stopped and looked above my seat to find enough space to store his skateboard.  Pauline said, “They’re definitely coming to Victory Junction.”  I called out to confirm our suspicions, and the three of them shouted back with exhausted delight that they were in fact headed to the TM Retreat Weekend at VJGC.  I handed my TMA wristband to the woman and we introduced ourselves.  They were on the third leg of their trip from Kenai, Alaska to Greensboro, and more than a day of flying. 

And so began our VJGC Retreat Weekend Adventure.  Maggie, Huey, and Sheena, The Alaskans, were a very fitting introduction to what was one of the most emotional, exciting, and sensational experiences Pauline and I have had since becoming involved with the TMA.  The camp was scheduled to begin on Friday afternoon, November 17th. We arrived on Wednesday.  Our weekend retreat coincided with an international directors meeting for all of the camps in the Hole in the Wall Gang Camp Association.  The directors were gathered at VJGC for an annual best practices meeting.  The TMA was invited to a breakfast meeting of the directors and had the opportunity to make a presentation about TM, the TMA and our partnership with Victory Junction Gang Camp.  I dedicated my remarks to the directors to Maggie Winston.  A few of the directors remained at Victory Junction during the weekend as volunteers.

Victory Junction Gang Camp was started and is operated by Pattie and Kyle Petty to honor their son, Adam.  Before Adam died in a racing accident, he had expressed an interest to his parents about starting a camp for children with disabilities or serious illnesses.  Their camp is more than a fitting tribute to Adam.  By looking at the photographs of VJGC, it is obvious that the camp is just a magnificent place.  The photographs also provide some sense of the range and variety of the recreation programs that are available to the children, regardless of the severity of the disability.  What is not obvious from the photographs is the love and care that surrounds these children at camp.  Our 17 to 25 year old “children” came to VJGC and were provided the time of their lives.  We had more than twenty people come with parents, siblings, friends or companions.  They came from as far away as Alaska and California and from across the country for a three day weekend.  For all of them, it was a vacation away from their challenges and their difficulties. 

On the Thursday evening before camp, Dr. Peter Sim and some of the other directors and staff hosted a dinner for the TMA officers, Dr. Douglas Kerr, Dr. Adam Kaplin and Chitra Krishnan.  Everyone at the dinner knew that Jim Lubin was flown into the camp for the weekend, except for me and Pauline.  Jim rolled into the room to surprise us!  We were more than surprised.  Being able to spend the weekend at camp with Jim was one of the most amazing experiences and joys I have had in my life.  Jim’s brother, Joe, and Jim’s nurse, Joyce, also made the trip.  It was the first traveling Jim had done in twenty years.  The dinner discussion was incredible as Drs. Kerr and Kaplin talked about their research and answered many, many questions.  Jim and I were up talking to each other until 2:00 in the morning.

By the time the campers began arriving on Friday afternoon, I was already emotionally spent.  And then we had three days of one of the most emotionally exhausting and exhilarating experiences one could possibly imagine.  There is no way to communicate the intensity of the experience.  There were so many incredible and personal moments throughout the weekend.  The camp facility is truly amazing.  Four of the campers were quadriplegic, and these people had access to every building and activity at the camp.  The bonding that occurred during the weekend was wonderful.  Most of the kids were up talking to each other for most of Friday night.  While I was having my nails done in sparkly purple polish in the Fab Shop at 7:00 AM on Saturday morning, I pretty much had the camp to myself.  I did have Courtney to keep me company as she was having a beautiful blue streak dyed into her hair.  It’s all about fashion at Victory Junction. 

In addition to the very intense bonding that went on between the kids and between the parents, the camp was filled with volunteers who assisted each of the kids and families throughout the weekend.  These people come from across the country to volunteer their time and their positive energy to help make this weekend one of the most memorable and wonderful possible.  The directors and the full-time staff are responsible for the day-to-day operation of the camp.  Maintaining the facility, conducting the programs and operating the logistics issues of camp are just enormous and complicated jobs.  The camp is so well run.  Dr. Peter Sim is the medical director at the camp.  Peter and Emily Parenteau ensure that everyone who comes to camp is safe and is well-cared for.   They have a comprehensive understanding of all of the medical issues of the campers and are fully prepared to meet every camper’s unique needs.  They also recruit additional medical personnel when the needs warrant. 

Parents and campers had the opportunity to listen to a presentation by Dr. Kerr and Dr. Kaplin on Saturday evening about research being done at the Johns Hopkins TM Center.  Drs. Kaplin and Kerr and Chitra were available all weekend for campers and parents to ask questions.

From the arts and crafts activities, to fishing, to horseback riding, to the awesome food, to the dancing and the incredible talent show, everyone had a great and a fun time.  The only thing people didn’t want to do during the weekend was leave.

We had the opportunity to talk to Pattie and Kyle Petty about the TMA and about VJGC.  They are very humble and soft spoken and spiritual people who are quick to not take credit for the amazing creation that has arisen just outside of Greensboro, North Carolina.  But it is their creation; it is their love and their devotion, and it is so obvious that it has grown and flourished from the love of their son.  Their honoring of Adam’s vision and their enormously hard work and their positive energy permeate every facet of this wondrous place.  We have so much respect and admiration for this lovely family.  The TMA will never be able to adequately thank the Petty’s and the VJGC directors and staff for this most incredible opportunity that has been offered through our partnership.  VJGC has committed to holding a bi-annual retreat weekend and summer family camp for the TMA community.  A weekend at Victory Junction Gang Camp reinforced for me and Pauline, for the other offices, for Doug, Adam and Chitra and for the wonderful people who attended from the TMA community that the very best of the human spirit is alive and well! 

Jim Lubin

I just got back from The Transverse Myelitis Association Young Adult's Autumn Retreat at Victory Junction Gang Camp. I flew from Seattle, WA to Asheboro, NC on a Learjet provided by Jet ICU. I was picked up at my house by ambulance, taken to the airport and transferred on to the jet. The total trip took about 5 hours 40 minutes with a stop in Omaha, NE to refuel. Flying at 41,000 feet at 585 mph was so smooth. I went with my nurse, an ICU nurse and a respiratory therapist.  They told me that was how Christopher Reeve traveled. The flight nurse told me that we use the call sign Lifeguard, meaning medical transport, so that we have priority status going into any airport.  Only two other aircraft have priority over that, Air Force One and Air Force Two.

I don’t go out much at all. I did go to a meeting we had here in Seattle a few years ago. That was the time my ventilator stopped working in the van on the way home. I had to be bagged for about 20 minutes until I made it home to my other vent. One of the doctors mentioned that he was surprised when he heard I agreed to go after that had happened before. I figured there was a backup vent on the plane, so there was nothing to worry about.

I was at Victory Junction Gang Camp with my brother and nurse, Thursday through Sunday. VJGC is really cool and the people are some of the nicest I have ever met. Everything there is fully accessible. I met others with TM and saw some friends again. I was able to watch Star Wars Episode 3 on a big projection screen.  I don’t get to go to a movie theater.  I made some new friends and just had a really great time.

I got to meet another vent dependent quad due to TM.  She is 17 and just got sick a year ago.  She was born just ten days before I got sick.  She is awesome!  She decided to sing at the talent show at camp, and also did a “stand up” comedy routine.  I was laughing so much, my eyes got teary.

I felt like a kid at Disneyland.  I don’t know if you have seen that Disneyland commercial where the little kid says, “We’re too excited to sleep,” that’s exactly what it was like.  I went to bed around 3:00 AM; then my nurse started getting me up at 6:30 AM so we would make it to 8:30 AM breakfast.  No one wanted to miss anything.  As one of the camp directors said during the closing program, “sleep is overrated. You can sleep when you leave camp.”

If anyone ever has an opportunity to go to Victory Junction Gang Camp, don’t miss going.  I can’t even fully describe how much fun I had.  Go as a volunteer if you are a kid at heart.
http://www.victoryjunction.org/

What   What?
Kathryn Alexander

Kudos to all who helped put together such an awesome Transverse Myelitis weekend at Victory Junction in North Carolina.  To be together after so many months and even years of feeling like we were the only ones with this unusual TM diagnosis was just what we all needed. What a fun time to see old friends, some of whom were looking so svelte; they were hardly recognizable aside from their sparkling smiles!   And what a time to bond with new friends from all over the globe – from as far north as icy Alaska and as far west as sunny California.

The  Petty family’s generous spirit  provided a wonderland atmosphere at Victory Junction, and being there allowed us all, no matter how extensively the TM had altered our lives, to fully enjoy a of weekend of laughter and tears.  The weekend theme of Welcome to Oz and the challenge to us to personally apprehend the courage, heart and mind that the Oz characters were seeking, brought new meaning to this childhood story I know so well, and helped me to see I can do anything!  Over the Rainbow was one of the lullabies my mom used to sing to me as a baby and for her it was  impossible to hear this sung without tears – healing tears though, that brought new hope.

The highlights for me were being able to ride a horse again, watch my mother make a fool of herself doing the chicken dance and the YMCA, eat cheesecake on a stick, Catch, Kiss and Throw Back any fish we happened to catch, color our hair and nails outrageous colors, and laugh at Jose Dominguez and PP as they and so many others entertained us with complete craziness and love.

For my mom, having the opportunity to listen to and speak with Drs. Kerr and Kaplan was invaluable.  All she kept saying when we returned home was, “They are such busy people and yet they sat so graciously and answered our questions and listened to our tears.”  Thank you for making this an amazing weekend for her, too.

Blessings and thanks to all the supportive and loving counselors, the nutty camp staff, everyone who spent a zillion hours planning, the Petty family for providing such a welcoming and fun-filled facility, all the doctors who gave us hope, and for each and every camper for risking, sharing their lives and helping to melt troubles like lemon drops.

If happy little bluebirds fly;
Beyond the rainbow;
Why, oh why can’t I?

Elizabeth Cross

November 17th to November 19th 2006 was almost certainly one of the best times of my life while being “sick.”  For those three days, I got to forget about treatments, I got to leave behind the rumors I get from kids back home; I got to have fun with other kids who were going through something like me!  For once, I didn’t feel alone. Everywhere I turned, someone was smiling!  It was contagious, in a good wayJ.  I am very grateful that I had the opportunity to attend the (TMA) Victory Junction Gang Camp.  I learned that you cannot spend every moment of your life dwelling on why you cannot do certain things, but that you have to just live life to the best you can.  We are all strong no matter what condition we are in.  Hopefully, I’ll see you at the next Victory Junction Gang Camp Retreat!

Huey Winston

Victory Junction to me was nothing but love and happiness.  Only positive energy exists there. Seeing everyone come together and share experiences was overwhelming.  Just being there gave me a feeling that is almost indescribable and then being there with people we could relate and talk to was almost too much. We learned so much and gained so many new friends. I love Victory Junction and did not want to ever leave, and can’t wait to go back.

Adam Kaplin

To say the VJGC TM weekend was inspiring is such an understatement it is like saying the sun is a decent source of light... Of course, the setting was unbelievable (picture a Disneyworld built around a racing theme, where all activities are completely accessible, and populated by a group of magical counselors and volunteers who make the impossible become possible with unending good cheer, caring and compassion)... But as one might have guessed, the setting is the background for the main event, which is what happens when you get a group of people who are directly or indirectly touched by TM together in a supportive, safe and mutually respectful way… Which is what the VJGC camp and the TMA are so expert at doing... People who didn’t know one another just a few moments ago are suddenly the best of friends... People who never knew that anyone could possibly understand what it was like to feel the way they do, find others who have experienced the exact same feelings... People who thought that they were learning so much from others come to realize that they taught others so much more, in ways they could not have imagined, merely by having shared their experiences and observations... Spending time at the camp is transformative, where each day becomes vastly more than 24 hours could possibly contain... In exchange for time spent, each participant receives hope mixed with just the right amounts of laughter, reverence and love... Before I went, if you’d told me that there was a place like the VJGC during the TM weekend, I wouldn’t have believed you... Wouldn’t have even been able to even imagine it... Having experienced it for myself, I wouldn’t have missed a minute of it!!!!
            
Maggie Winston

Victory Junction is a truly magical place, and I got the chance to experience magical people IN a magical place for an entire weekend that felt like a lifetime. As soon as we stepped off the bus that picked us up at the airport, we felt like we were home, when in reality we were the farthest away from home as we had ever been. We went to bed smiling every night feeling wholeheartedly blessed to be there. Anyone who goes there and doesn’t do everything in their power to go back is crazy.  I am a better person after being there and meeting everyone.  See you all again in August!  

Douglas Kerr

For me, the VJGC was an amazing experience that was truly life-changing, a term I don’t think I’ve ever used before.  I see kids with TM all the time and I have dedicated my life to treating them to the best of my ability.  And the group at Hopkins is unlike any group at any institution in the world in terms of their ability, intelligence and compassion.  But we don’t see kids and families like this.  We hadn’t met some of the incredible families and learned their stories.  We hadn’t met Maggie, Alana, Brian and the rest.  We hadn’t had time to get to know the TM patients personally since we had to spend so much effort caring for them.  We hadn’t seen them struggle.  We hadn’t seen them smile and be normal.  We hadn’t seen joy in their faces.  To see this was fun.  It was exhilarating.  And it redoubled my commitment to develop better treatments and cures for TM patients!  Thanks for letting me be a part of this incredible experience. 

Jessie Danninger

The weekend was amazing!  It was so satisfying to see people with TM meet others with the illness for what was probably the first time in their lives.  I know such an encounter would have helped me feel less lonely and afraid when I first became ill.  It was also thrilling to finally meet another person with my particular disability -- hand problems!  We really connected and I hope I inspired her and her family as much as they inspired me.

Cody Unser 
           
Have you ever had moments in your life you just wanted to freeze in time because they were so amazing and breath taking you couldn’t let go?  That’s what I wanted to do when I was on the bus leaving camp back to the airport to go back to the craziness of life.  I remember thinking, “This camp is not only a place for love and friendship, but a place of hope.”  The very first night we girls, Molly, Martha, Laura, Andrea, and I stayed up so late laughing and sharing everything about ourselves that only we would understand since we were affected with Transverse Myelitis.  It was that moment I knew the weekend was going to be unforgettable and that these girls were forever friends.  Singing, dancing, playing, acting, made everyone smile and laugh, which underneath said, “Everything is not only going to be alright but spectacular”!  So I just wanted to thank the big heart at Victory Junction and the wonderful gang from the bottom of my heart for making the Transverse Myelitis Youth Retreat Weekend full of moments I wanted to freeze.  You guys not only generate love and friendship, but most of all hope!  Thank you so much!  I will see you all hopefully soon!

Amy Shultz

I had the opportunity to attend the TM retreat weekend at Victory Junction Gang Camp.  I arrived Friday evening a little scared and reluctant, not sure what to expect.  I was greeted by some really wonderful, positive, upbeat ladies, Jenna, Dee and Donna whom I spent the weekend with.  I quickly realized how special this place was.  After dinner they quickly started getting me to loosen up with getting involved in the singing and dancing.  I ended the evening talking to others with TM.  It was truly incredible hearing how similar our stories were.  We were able to talk to and relate to each other in a unique way.

Saturday morning arrived with an upbeat and positive energy which flowed throughout the day.  My day was filled with plenty of laughter, plenty of fun, and many happy tears.  With the day ending hearing some really good updates from Dr. Kerr and Dr. Kaplin.

Sunday morning arrived way too quickly bringing an end to an awesome weekend.  Everyone there at Victory Junction is truly special for what they do.  I could really tell how much they cared about us.  My experience there is something I’ll never forget.  I’ve not had a weekend so full of memories and fun for nearly ten years.  VJ is truly an incredible place with incredible people. 

As I pulled away Sunday a changed person, I vowed to let everyone know how much it meant to me.  I wish to thank everyone who I shared this weekend with, from the bottom of my heart for all the wonderful memories. 

Perry Peltier (forever known as Paula’s brother)

In hopes of greater things for 2007, I look back to 2006 with memories that I will always have; a weekend of laughs, tears, hugs, and a time to meet new friends.  Victory Junction, it really does live up to its name. I had the best time just being me. Little did I know there are just as many goofy, funny, wonderful people I needed to meet. Meeting the TMA family was such a great victory.  The Alaskans, Maggie, Huey, Shena, I wish I could have spent more time with you. I felt like I knew you all of my life. Huey, you definitely have a permanent partner anytime doing comedy. I hope to see the Alaska group soon.

The one thing that sticks out the most in my mind is the love and bond I have with my sister, Paula. We don’t always get to see each other, but we made up for it. It was great to be able to share the experiences my sister went through. When Paula came down with TM, our family was just as scared as she was. Our lives were forever changed. As the years passed, I learned so much and found myself being a better person for those experiences. Paula, thank you for letting me be a part of a monumental weekend.

As for the TMA family, it was great meeting you and hope I see you soon.  I will never forget the laughter on Sandy’s face when Jose and PP did the famous “Stormy Symphony.”  I hope everyone got exactly what I got out of VJ weekend, a rejuvenated smile and loving heart that makes me say thanks everyday. THANK YOU for letting me make you laugh, TMA family.

Josh Droy

When I first heard about Victory Junction I didn’t really want to go. Many times I was asked and still was uneasy about it. Finally I gave in and said I would give it a chance. I was kind of nervous when I got there, because I didn’t know anyone.  However, it was easy to get to know people. The people are friendly and make you feel as if you are at home. They have many fun things planned throughout your stay, as well as good food. Another thing that was cool was how the whole place looks. It is like a race track. All the buildings in Victory Junction are themed with this overall look. I plan to go back someday.  

Paula Lazzeri

What an amazing time we all had at Victory Junction in November 2006.  I went as both a volunteer/mentor and officer of The Transverse Myelitis Association.  My brother, Perry, came along as a volunteer also.  Our long weekend with the young adults was a time of questions, bonding, laughter, and so much fun.

Victory Junction is a magical place.  They have built an incredible camp.  There is never a loss for things to do.  I volunteered in the arts and crafts building.  We made scrapbooks, pom-pom animals, and green slime.  The choices were endless for the kids.  It was nice to see them leave with a keepsake.  

The volunteers at Victory Junction were awesome.  From the people who worked in the kitchen to the cleaning fairies, they all truly understand giving from the heart.  We watched everyone sing, dance, and make friendships. 

Having Dr. Kerr, Dr. Kaplin, and Chitra from Johns Hopkins was also a highlight.  I watched each of them work tirelessly to get to know each camper.  They were up early and out late answering every question posed.  Thank you for taking time away from your families to help us all.

I want to take this time to thank my brother, Perry, for coming to camp.  By the end of the retreat everyone knew Perry.  I’m positive we will all remember Jose Domingos on stage night.  You made each camper and volunteer smile!  Thanks so much for being a wonderful and supportive brother.  I love you!

It meant so much to see this camp finally happen.  The bonding and friendships each person made there was priceless.  I only wish Victory Junction would have been around when I was a young adult with TM.  I look forward to volunteering at each future camp!