Dragonfly Retreat #3

This past weekend, I attended Dragonfly's third teen retreat. Let me just say that it gets more amazing each year. I'm still surprised at how easy it is to reconnect with everyone. We spend so much time away from each other, but we fit together so effortlessly like puzzle pieces. We've also gotten really good at welcoming new people into the family.

We did so many different things this year. On Friday night, Derek, LeeAnn, and baby Emma kicked off our night with an introduction and silly (but fun) icebreaker. Most of our activities take place on Saturday. There was a scavenger hunt, which was absolutely crazy, but still a lot of fun. Come rain, sleet, hail, or snow, we always manage to get time to be outside. I went on the big swing (or the "Swing of Death" as it has been nicknamed) at least three times, if not more. The first time I rode with Becca^2. The second time I rode with Zoofy and Michelle. And the third time I rode with Kelly and Chelsea. And I chopped the rope each time. It was so much fun. I hope to increase my record next year. A group of us ventured off to the high ropes course, which I wholeheartedly passed on. I could barely get through it in dry conditions last year so I wasn't all that eager to try it in the rain. I also passed on the zipline because I didn't really feel like staying out and getting soaked for much longer. We all went to the guest house and had smoothies and kale chips. While we were there, we played a really fun game called "What's Yours Like?" At some point on Saturday, we went to art therapy and decorated pillows and drew in/on our own healing journals. We played the transplant edition of Jeopardy, and that got a little competitive. Earlier on in the day (on Saturday), Tanner, Sarang, and I led the "Risky Behaviors" session. If I'm being completely honest though, Sarang and Tanner did most of the work. Hunzallah was our prime example of what not to do. It was more conversational and casual, which was something that I think we all enjoyed. We also collectively discussed improvements that we can make for Dragonfly as a family and a team. (And if I'm being truly honest, it is going to take a lot of doing, but less so if we're all working together and helping each other out.) This morning, we played the transplant edition of the Game of Life, which was all thanks to Millie. (It was actually supposed to be my responsibility, but she picked my slack, which I'm both thankful and sorry for.) After that, we dispersed to either play in the gym or in the game room. I was going to play in the gym, but instead involved myself in conversation with Valerie, Tanner, and Becca, and later on Millie as well.

I keep thinking of what Becca said on Saturday night. She said that she knows when something isn't quite right with her because she's lost her spark. (I think it applies for her in a figurative and literal sense.) And if I'm being honest, I think I lost mine over this past semester of college, figuratively not literally. But it has returned and it'll stay for a while. I think I'm going to try a little bit harder to stay in touch with everyone, maybe even set up a video chat with a few people if we can.

I have a couple of regrets. My main regret is that I didn't take any pictures and refused to be in a lot of pictures, hahaha. That's relatively easy to remedy and I'll definitely be bugging everyone to take pictures with me next year. My second regret is that it's impossible to record and/or write down every funny thing that someone among us says or does. We had some pretty hilarious moments though, including "It must be something in the name" to the ranch dressing incident at dinner on Saturday night to Derek being hit on the head with a ping pong ball during Charlotte and Sarang's fierce ping pong game to the somewhat offbeat drum line this morning. There are so many moments that we share together and I wish I could capture all of them. I wish I could bottle them all up and let them free on my bad days.

Dragonfly means so much to me, so much that I don't know what I would have done with myself without it. I knew that there were other heart transplant recipients out there in the world, but I never knew that there were so many who were as young as I am. Before Dragonfly, I never knew about pulmonary hypertension. I'm glad that I'm more aware today than I was three years ago. It's a really nice change of pace to be with my Dragonfly family. I needed to get away from home and college and the retreat is always the perfect opportunity for that. I know that I can count on my Dragonfly family. Wherever I go, I know they're with me. And wherever they go, I'm with them. Nothing will ever change that. I love you all.

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A few little things to add: 

-To Justine: We love and miss you so much. You are in our thoughts, prayers, and hearts. Your Dragonfly family will always be there for you. 

-To Bre, Darby, Missy, Rachel, and all those who have previously attended the teen retreat, but were unable to make it this year: We missed you so much and hope to see you next year.

-Also this weekend, we had the pleasure of celebrating for two people very near and dear to me. On Friday night, we wished Millie a very happy birthday. And last night, Saturday night, we congratulated Tanner on his fourth heartiversary. Much love to you both. Here's to many more years to come. 

-If you have the time, please visit the Dragonfly Heart Camp website (http://www.dragonflyheartcamp.org) and like the Facebook page (Dragonfly Heart Camp Inc.) If you'd like to make a donation to Dragonfly Heart Camp, you can do so through the website. Thank you for your support. 

Dragonfly Summer Camp

I've been away from home for days at a time before, but this time was a little bit different...

I went to Dragonfly's summer camp at Camp Fairlee. I technically went as a counselor in training, but I really ended up as just a camper. And to be honest, I still don't really know what I was supposed to have been doing anyway. But I had a wonderful time, one that I won't soon forget, one that I will cherish and hold onto forever.

Sunday was the first day of camp. It was a bit depressing to me. I felt so alone and awkward, even with my friends around me. I couldn't shake the feeling away. I wanted to leave and never come back, and I even considered telling Rhonda or Kathi that, but I didn't. I'm the kind of person that can give you my life story easily, but at the same time I'm also the kind of person that needs time to settle and become comfortable. That was the hardest part for me. When I'm around new people, I need time to show people who I am. It's like Maria said, I did become more confident by the end of camp. I wish I was that way from the beginning, but opening up to new people has never been easy for me.

Monday, Tuesday, and Wednesday were all so fun. We did so many things: climbing a rock wall to go ziplining, sailing, going on nature walks, singing and talking at the campfires at night, water games, swimming, arts and crafts, chatting at mealtimes, staying up late talking, having a talent show, dancing, singing camp songs at odd intervals, and a lot more. I didn't get to learn how to sail, but I did ride on a big boat. The late night walk that a select few of us went on was a beautiful night. The stars were shining so bright and brilliantly and each of us were at peace. The campfires were so much fun. I have to admit that the camp songs were really silly, but they grew on me. I never want to forget them now. I didn't go swimming, but I put my feet in pool. I love how so many people got into bracelet making, it made me happy. I only participated in the water fight against the Pocomoke boys. The water obstacle course with the slide seemed like it was fun, but I was sick of water and wanted to stay dry. We shared our stories with each other and learned about our counselors, we teased playfully and laughed wholeheartedly at each other's silliness. I never thought that I'd miss all of the things that we did, but I do.

Thursday morning was a mixed bag of feelings. I've always been the kind of person who changes their mind. I was so sure that I'd be miserable at camp, but I wasn't. I endured through a rough first day and found myself glad to be there. I was standing with Manesh, Kathi, and Nathan, just listening and talking when an opportunity arose or when a question was directed towards me. Manesh asked me if I had enjoyed camp and I said yes. I couldn't meet his eyes or anyone else's so I looked at the ground with a big smile stuck to my face. I asked Manesh and Nathan what they got out of Dragonfly. Manesh talked about how special each of us are and Nathan talked about our bravery. I told them and Kathi that bravery was never a choice for us. We had to be brave. I said that it was because it was all we knew being in the situations that we found ourselves in. When I said that, I didn't really mean myself as much as I did everyone else. I look at Gwen, our Harvard graduate with a PhD and honors, and think of how mature and brilliant she is. I look at Darby and I see how strong her will to live life and enjoy every bit of it is, how determined she is. I look at Coralys, one of Dragonfly's younglings, and I just want to scoop her up in my arms and hug her because she's been through so much for being so young and it doesn't slow her down at all. I look at all of the Dragonfly campers that attended camp this year and I feel warm and fuzzy on the inside. I'm so amazed by how wonderful each of them are and I'm proud of them for everything that they've endured. And I guess I'm also amazed that I'm one of them too.

My heart aches for camp, for my Dragonfly family and friends. I never expected to think so fondly of my experience. I miss it so much. I miss my friends and the fun that we had together. I miss the counselors and their accents. They have some of the most beautiful voices that I've ever heard. It was so entertaining to hear them using different words to describe things (paper towels are kitchen rolls, flashlights are torches, fanny packs are bum bags, pants are underwear, sneakers are trainers, sweaters are jumpers, etc.). I admire all of the counselors so much. They work so incredibly hard and cater to the needs of the campers so well. On Tuesday, when we had our last campfire, I remember saying that I don't think I'll ever be like them. And I'm not sure who it was, my memory fails me, but someone said that I will be able to do the things that they do. At this point in time, I don't know if I'm capable. There is one important thing to be said: the counselors are now a permanent part of Dragonfly's growing family and they always will be, even if we never meet again. I know that everyone else changed the lives of the counselors (I don't include myself because I don't have an impact on people), but the counselors changed our lives too. Everything about them makes me want to be a better person, a stronger person than I am. I hope I can be like them someday.

I liked being away from home and being with people who know what it's like to be me. Most of us take the same medication and have had similar experiences. Even though Gwen (she's a multivisceral organ transplant) and Darby (she's got pulmonary hypertension) are going through different things than the rest of us, I know that they understand what it's like and I hope and would like to say that I understand what it's like for them too. At the end of the day, it doesn't matter if you've had a transplant or if you've got pulmonary hypertension (or if you're the family member or friend of someone who's had a transplant or has pulmonary hypertension), Dragonfly is a family. And I'm glad to be a part of it.
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"I'm the mermaid of dirt." - Bradley

"...flop around like a dead fish." - Bradley

"Fawzia, your butt's wet!" - Bre
"Shut up, Bre!" - Me
(Later on, Bre tells me that she just wanted everyone to look at my butt. My DHC friends, gotta love 'em.)

"Everywhere we go
people want to know
who we are and where we come from
so we tell them
we're from Dragonfly
mighty mighty Dragonfly
and if they can't hear us, we sing a little louder"
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If you'd like to make a donation of any amount (even the littlest bit counts) to Dragonfly Heart Camp, please follow this link:http://www.dragonflyheartcamp.org/index.html. The donate button is on the right side of the page if you scroll down just a little bit. Thank you for reading and thinking of us.

Dragonfly Retreat #2

This past weekend I spent some time with a group of people that I regard as a second family, my Dragonfly family. It felt so nice to be back around people who understand what I've been through, what I go through, and what I will go through someday. It's actually really funny to me how well things worked out this year. At the end of the retreat last year, I honestly don't ever remember being extremely close to anyone. I mean, I really liked everyone, but I was still new and adjusting. I think it's true when they say that distance makes the heart grow fonder. As soon I met back up with my old friends from last year, we all just clicked right away. I definitely enjoyed my second year as a camper more than I did my first year just because familiarity was already established.

We did a lot of really amazing activities this year. I liked the activities better this year. We did yoga (which by the way has made me sore...I definitely don't use all of those muscles on a daily basis!), which was new this year. We also went ziplining and went on the giant swing. I went ziplining at the same time as Dr. Scheel. I went on the giant swing twice. The first time was with Bre and Tanner. The second time was with Dr. Scheel and Kelly. On the second time around, I pulled the blue rope to make us drop. I was so excited about doing that. The high ropes was new this year. Let me be the first to say that I'm all about adrenaline rushes, but high ropes are not my cup of tea. Unfortunately, I didn't realize that until after I got through it, but I'm still actually proud that I did it. High ropes aren't for everyone. Funnily enough, Darby loved the high ropes, but refused to go on the swing. To each their own. There was smoothie making and a little bit of winding down time after our adventures. And then we did karaoke of sorts, which was hilarious but it actually turned out being a lot of fun after we loosened up. The songs of the night, in my opinion, were "We Are Family," "Roar," "Blurred Lines," and "Gangnam Style." When "We Are Family" came on, pretty much everyone jumped up and let go. It was a really great Saturday and I hope we keep these activities because it's the activities that start to bring us together. Earlier this morning, we decorated little buckets and put a list of things we want to do in life inside of them. We essentially created bucket lists. (Except I didn't actually get the chance to make my list so I will get to that eventually. I thought it was definitely a cute and creative idea.)

Last year, I remember feeling sad because it seemed like mostly everyone knew each other and they did because they had all been going to camp together for years. I think it just started off with the CHOP kids and now other hospitals are joining in. I am really glad that I got the chance to go again. I got the chance to make new friends and reconnect with my old ones. I tried new things and had all sorts of crazy fun experiences. I really like being away from "normal" people and spending time with my Dragonfly family because they all know the single most important thing about me and they'll never treat me differently.

During the Dragonfly retreat, our souls were set free. They danced and sang and laughed. They hugged and comforted and loved. Most importantly though, they soared high into the sky, spread their wings, and flew.

We are organizers and planners who make the magic happen. We are living with transplants or pulmonary hypertension. We are stubborn fighters and lovers. We are Dragonfly and we are determined to make the best of our lives whether we are "normal" or not.

Dragonfly Retreat

I just had one of the most amazing weekends of my entire life, one of the best actually. I went to the Dragonfly Heart Camp Retreat at NorthBay in Maryland. I didn't realize that this weekend would make me feel so much better and hopeful. I met other heart transplant recipients, a lung transplant recipient, and pulmonary hypertension patients, in addition to some medical personnel. I thoroughly enjoyed the weekend. I can't even express how amazing it was for me and for my new friends. 

I knew that there were other transplant recipients running around somewhere, but I never could find them...until now. I met people who are more than 5 years out of transplant, even 15 years and more. It was incredible. It gives me hope for the future. I'm not a statistic. No one gets to tell me that because I'm a transplant recipient I'll only live for a certain amount of time, because of the people I met. 

I'm not going to be able to say everything that I want to say, but I'm going to at least try to say some more. I just have so much to say about this weekend. We all learned something and had the chance to discuss a lot of things. It was nice to be around people who understand me because they've been there. They know how it feels and so I don't have to feel alone in the world anymore. I have a strong support team now with people who truly do understand what it's like. This experience has made me stronger. I now take my medicine without my applesauce. I refuse to go back to it because if my friends can take theirs without something like that, then I can too. 

While at camp, I found myself starting to think 'Wow, your life was so much worse than mine,' but then I realized that we've all had it tough and that includes me too. I can't say that their experience is worse than mine or that they feel more pain than I do. We've all had it rough, but it's made us so much stronger and all the more motivated. We are inspirations to each other, because each one of us has fought their own fight and still continues to move on and push for another day to live. We all have a purpose in life. 

Feelings aside, this was an extremely fun filled weekend. There was ziplinig, the swing, rock climbing, indoor bonfires, smores, playing ping pong, table hockey, and pool, and just having fun with each other. The girls and I stayed up the second night to talk. It was a lot of fun. 

My thoughts are all over the place. I really miss camp. I miss my friends. I miss being able to take medicine with other people. I miss doing all of those fun activities. I miss having breakfast, lunch, and dinner together. I miss the story telling and the crafts. I miss everything. And I am a little sad, but I know that I'll see everyone again. Even if I don't, they're always with me because of the special bond we've created. No one can break that. Together, we are stronger. I'm not alone. 

It was a life changing experience.

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"Five heart transplant recipients, ten souls" - Derek 

"Shit's about to hit the fan" - Bre (She said something like this, haha)

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Link to a compilation of pictures and a video from Dragonfly: http://www.youtube.com/watch?v=Ljytvb264JU

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I've dubbed Johns Hopkins as JHOP since Children's Hospital of Philadelphia is shortened to CHOP. :)