Educating your community – Camp Sunshine edition

For my final paper for my first graduate-level course in Multicultural Perspectives of Counseling, I am writing a proposal to better prepare students for service trips. I became interested in this topic because I had such a positive experience in the preparation for an international service trip I went on in college through our pre-trip readings and discussions, which I believe made all of the difference. I feel that there is work to be done in how to make people’s experiences on service trips more sustainable and provide education to others in the community, in order to ensure that people do not go on a trip and just leave the experience there, but can bring it home into their daily lives.

I believe it is important to educate yourself and others on the cause you are standing for. Whether this be learning about the economy in the country you are serving in or learning the facts about an illness you are supporting, these are ways you can continue to stand in solidarity with the people you are serving. This shows respect to those people rather than seeing them as lesser than you, or that you are greater than them for providing them with your help. I think this is a common misconception – that we feel badly for those that we help and that we are above them for providing them with a service. This why at Assumption College we called our trips “service immersion” trips rather than “mission” trips, because the language is much more empowering to those that we are serving. “Service immersion” takes the stance that we are walking with the people and enjoying their presence rather than looking at it as a task or that they somehow need our help because they are lesser than us and we are bringing something to them. The latter options are not true, and this viewpoint can be avoided with proper preparation, education, and reflection. I believe it is possible to maintain in solidarity with people we serve after we leave their presence, which is why I am writing this blog post. I am writing this post for people to learn more facts about Camp Sunshine, Retinoblastoma, and childhood cancer as a whole. I hope you can learn something or be inspired in some way 🙂

Camp Sunshine

Ever since I was little, I dreamed about being a teacher for kids in the hospital, which is where my passion for becoming a child life specialist started. My senior year in high school at Bishop Feehan, there was an information meeting about taking a group to volunteer at Camp Sunshine. I was hooked from the meeting and couldn’t believe that there was such a place for families to go to. So, what exactly is Camp Sunshine? Camp is a place where families can go to find comfort and community in some of the most trying times of their child’s life, and unfortunately, even after the child potentially passes away. Camp encompasses the entire family and recognizes that illness impacts beyond just the sick child, and can leave siblings and parents to be just as impacted. The families yearn to meet people who “get it” by meeting other parents or siblings who have a sick child in their family. Moreover, the campers get to be just kids beyond the label of having a life-limiting illness by doing fun activities throughout the week. Even though everyone there has something in common, they have the freedom to not let this define them. The camp is free to attend for families with meals and lodging included, has parent support groups, talent shows, costume parties, campouts, movie nights, a beautiful waterfront on Sebago Lake, a wishboat ceremony, the Camp Sunshine song, and endless friendships. Each week has a different diagnosis to choose from to find the week that best suits the family’s needs, such as organ transplant, lupus, low-grade brain tumor, Shwachman–Diamond syndrome, various types of cancer, and more.

This week was especially humbling for me. It was my third time volunteering at Camp and first time at Retinoblastoma week. Therefore, I was not a “regular”. I wasn’t going to know any of the families already like some other volunteers might have. This can seem intimidating when people already know each other, but this is humbling because in the end it is not about you. There will be new families, too. There will be opportunities to meet people throughout the week and form bonds. Of course part of camp is being there to have fun with the campers and learn from them, but the other part is just sitting back and taking it in. Throughout the week I was able to meet families that I have grown to admire even from only chatting with them for a few minutes. I was able to see kids come into camp not wanting to leave their parents’ side and go home not wanting to leave their new friends. I read a mother’s post on Facebook that her daughter wished at the wishboat ceremony on the last night of camp that she could come back as a volunteer someday, and another family writing that they hope to be volunteers in the future. This is what camp is all about. I was able to make some cute buddies in the tot lot age group this week, but I was also able to realize that it’s not about me. It’s not about the cute pictures you take with the kids and it’s not about always having 5 kids holding onto your legs. It’s about the simple and humble moments journaling by the Lake or having a girl who was once shy warm-up to you and show you her prizes she won at mini golf. It was also amazing to meet so many passionate volunteers throughout the week. We all got along so well and formed a bond where everyone was included in our dance parties and card playing shenanigans.

I invite you to watch this video about Camp Sunshine to get further insight on the magic it brings to so many families: https://www.youtube.com/watch?v=XCD8B4aBAls

Retinoblastoma, other eye cancers, and Childhood Cancer as a whole

Camp Sunshine serves families with a wide variety of illnesses. The first two times I volunteered at Camp, I attended Lupus sessions, which was a disease I had never heard of before and was excited to learn about. This year, I volunteered at Retinoblastoma week, which is a lesser known of the childhood cancers. Some campers had other types of eye cancers or cataracts.

fast facts about Retinoblastoma (RB):

  • Quoted from the AAO: “Retinoblastoma is cancer of the eye. It begins in the retina, the layer of nerve cells lining the back of the eye. It happens when nerve cells in the retina change, growing in size and number. The cells eventually form a tumor. The cells usually spread in and around the eye.”
  • RB is usually diagnosed before age 3
  • More than one family member may end up having RB because it can be passed on through genetics, but is not always. Some of the families at camp had siblings who both had it or had a parent with RB, but other families just had one child with it.
  • RB can be treated with chemo, removal of the eye and replacement with a prosthetic eye, or laser therapy. Other treatment options are also available.
  • The prognosis of the disease can vary, with some children being in remission after chemo, some children needing a prosthetic, and others becoming blind. This all depends on various factors, such as how early in disease progression the cancer is caught and treated, and whether or not the cancer cells spread to other areas of the body.
  • 3/4 of children have RB in one eye, and 1/4 have RB in both eyes.
  • EYE EXAMS ARE IMPORTANT TO DETECT WARNING SIGNS! As with any other aspect of your health, make sure you listen to your body and go to your doctor!

sources:

https://www.stjude.org/disease/retinoblastoma.html

https://kidshealth.org/en/parents/retinoblastoma.html

https://www.aao.org/eye-health/diseases/what-is-retinoblastoma

https://www.cancer.net/cancer-types/retinoblastoma-childhood/statistics

more quick facts about childhood cancer:

  • I believe it is important to note that children can have many other chronic conditions besides cancer, such as genetic disorders, cardiac or other organ issues, cystic fibrosis, diabetes, and many others.
  • Even though childhood cancer is something that is well known, it only gets 4% of funding from the NCI.
  • September is national childhood cancer awareness month
  • There are many non-profits you can dedicate your talents to, such as WHY ME & Sherry’s House, Alex’s Lemonade Stand, and Icing Smiles.

I hope that this post helped you to learn something new or inspired you to take some action in support of children and families. This is in no shape or way me trying to brag about what I am doing, infact, it is quite opposite of that. I feel that we should be able to share our passions without the fear of others assuming that we are bragging. Why can’t we cheer each other on and let people be passionate about their vocations in life? That is, afterall, one of the reasons we were put on this earth. I feel that informing others about your passions is the most humble thing to do, rather than just posting pictures about it and not continuing to tell the story. I wanted to learn something from Camp and become more informed, rather than just going and leaving. By becoming more educated, we are helping to provide sustainability to those that we serve. See you soon, those three yellow doors.

#GoCampSunshine #HandsUp

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The “Plan”.

There isn’t just one formula of how to “get where you’re going”. I say that in quotations because no matter how much of a “plan” we have or where we think we are going, it all usually ends up turning out differently than we thought. Kind of scary, and kind of beautiful, right?

I thought I had it all figured out. I was going to go to my dream school to do Child Life in the accelerated program so I’d have my Master’s in 5 years. WRONG. After the tour during my junior year of high school, I knew that this wasn’t the place for me to do my undergrad. I wanted to go to a Catholic school and have more of a campus feel and join lots of activities. So, I chose a different school and it was the absolute perfect fit for me – I was personally satisfied and had a more broad major where I could learn a more diverse set of professional skills. Then, I thought I had it all figured out once again. After I finished my undergrad, I would get my Master’s in Child Life right away – I would go to school and do my internship at the same time and I’d be all set. WRONG AGAIN. During my junior year of college, I didn’t feel that I was ready to jump right into grad school. I didn’t want to spend my whole senior year worrying about applications – I had become so fixated on the future and wanted to change that. I wanted to live in the moment. I wanted to take a step back and let go. For a third time, I thought I had it all figured out. I would do a year of service or find some kind of job and then apply to grad school for the year after. KIND OF WRONG, KIND OF RIGHT. I wrote about this in a previous post, but I ended up falling into a child life internship right after I finished my undergrad. It wasn’t affiliated with a master’s program like I had initially planned.

Plan, plan, plan.

It didn’t all turn out like I planned. It turned out way better.

I had no idea the kind of beauty that could be found beyond just what I had imagined. I had no idea that child life could be done in the comfort of someone’s home. I had no idea that I had the capability of passing the exam within 6 months of graduating.

You never know until you let go, sometimes.

It was kind of an egotistical thing. I thought that you were better because you had your master’s. I thought you were better because you worked in one of the best hospitals in the world. There is nothing wrong with any of those things – I am enrolled to begin my master’s program this summer and I have aspirations to maybe one day work in a hospital. But those things don’t make me better than anyone else.

How do any of those things make you “better”? Of course I am excited to learn new skills and gain professional development in grad school, but that doesn’t make me higher up than anyone else. Humility check. Because after all, the beauty of this vocation in child life is in the relationships you build. A degree can’t buy that. Nothing can. What could be more beautiful than being in a 12 year old girl from a foreign country’s video explaining to her class what has happened to her over her last year of cancer treatment, and her explaining how even though she looks different now, she still wants to be treated the same when she goes back to school. What could be more beautiful than making calm-down glitter jars with a four year old girl and her brother while their mom tells you their story of why they moved across the country for medical care. What could be more beautiful than seeing a little boy’s face light up because he sees that a stuffed animal has a port-a-cath just like himself.

These past few months have given me a humility check. I have been a witness to so many beautiful moments, way before I ever thought I would be in this field. While I have ambitions on this journey I am on, I cannot forget why I am doing it. I never thought a year ago when I walked across the stage at graduation that I would be here right now intertwined in these families’ lives. I just had my eyes set on the prize, but didn’t see that there was more than one way to that. And I am here. I don’t work in a big hospital and I don’t have my master’s degree, but I still have the best job in the world. I promise you, your dreams can come true if you are open to the multiple ways of getting there! Be not fixated on the end goal, but enjoy what you learn along the way in the process.

As I sit here late on a Sunday night, the week that I will begin my grad school journey, I am glad that I took this time to reflect. I am excited for what’s to come, but I never thought I would have even been where I am right now if I hadn’t gone to grad school yet. Boy was I wrong. I had to be flexible with my plans to allow for the beauty to unfold before I had planned it would. It’s not about a title. It’s about the learning. Your vocation can happen in the simplest ways, and I am forever grateful for these opportunities that have shown me that.

xo,
Jackie

Peace beyond understanding

It’s funny how life takes us to unexpected places.

At this time last year, I had just moved in for my senior year of college. I had this unexplainable and overwhelming sense of peace as the year began, so I ran with it. I prayed a lot over it, and trusted that this peace would carry me through.

The beginning of my senior year was far from what the average person would call “peaceful”. I had an accident the second week of school where I dropped a bench on my big toe, fracturing it and requiring immediate surgery. I was off my feet for almost three months. Needless to say, this was not how I planned to begin my senior year. Even though I want to become a child life specialist, I am squeamish when I am the one who is receiving the medical attention. When I was in the ER and the nurse came in to say they had contacted the orthopedic team to come over to evaluate, later leading to a procedure, I so distinctly remember closing my eyes, taking a deep breath, and saying, “Okay.” I knew I had to rely on the sense of peace that I had been feeling, a sense of peace that was and is far beyond myself. This was certainly an opportunity for me to explore what the meaning of peace truly means. I had heard the quotes, Peace. It does not mean to be in a place where there is no noise, trouble, or hard work. It means to be in the midst of those things, and still be calm in your heart.” and Peace is not the absence of conflict but the presence of Christ.” but had never so clearly understood them until that moment. It is one of those things where you say, “Yeah, yeah, I get it.” but don’t really “get it” until you are put in that situation. Or maybe some people never “get it” and that’s okay too, as we all understand situations differently. But for me, this is how I have come to understand peace. Sure, I can be at peace when things are peachy, but it was truly tested in a time of an unexpected event.

Around Christmas time I was getting back to myself, and was getting ready for my Human Services internship at WHY ME & Sherry’s House, a non-profit for children with cancer. (If you want to learn more about that experience, read my post here!) I was unsure about what I was going to do after graduation; I had looked at a Child Life master’s program, but decided that I wanted to wait to apply for a year so I could take some time off from academics and gain some more “life experience”. I had considered a year of service. I had considered looking for a job. But I didn’t just want to find a filler. I wanted it to be fulfilling.
Usually seniors in college are freaking out at this point, right? Of course I did get anxious at times, but I trusted my gut, and more importantly trusted God, that I was on the right path. My parents have always instilled in me to create my own path and not feel pressured to go with the crowd. My gut didn’t tell me to apply to grad school like lots of other people were doing, so I didn’t. My gut didn’t tell me that any of the job opportunities I had seen so far were what I felt called to do, so I didn’t jump on them. Okay, so what the heck do I do now? Yeah, I can trust that things are going to “work out” but that also involves being active in the process.

Life is full of surprises that you just can’t plan out.

Two months into my internship at WHY ME & Sherry’s House, one of the kids living at the house was moving. She had the most captivating giggle, was my helper in doing tasks around the house, loved tickles, and made dress-up a daily activity. She was a pure ray of sunshine, and made an everlasting impact on all the lives she touched. We had a going away party for her, and my supervisor told me that her child life specialist was coming!
WHAT?!
We met, and she told me about how she does Child Life in the home setting, which I had never learned about before. She also told me that they were starting a Child Life internship program at the agency she worked for. We exchanged information, and I moved forward with the application process. To keep all my options open, I took a tour of a school for students with emotional challenges for a possible job interview to follow. It didn’t feel right as I thought about it walking to my car, but ironically enough, as I got into my car, the child life specialist called me, telling she wanted to move forward with my application and have me start the internship upon graduation. I thought this was too good to be true. But, it wasn’t. Sometimes, there is no catch, and you can believe that good things can actually happen to you. Sometimes, not having a plan is a plan in itself, and allows for opportunities you hadn’t planned on!

I’m not going to sit here and pretend that everything in life always works out smoothly. Not everyone’s situation works out like mine did here. Who knows where I will end up after my internship. There are days when we have difficult cases.

But, I will continue to relish in the beauty of life. I will continue to work hard and accept whatever comes my way as a result of that. I will not feel guilty when something good happens in my life, but will be humble about it. There are so many surprises and opportunities for joy to be experienced. This past year of my life has shown me that I have to be open to whatever happens next, and fearlessly follow that!

I will write a post soon about my current internship, but wanted to write about this past year of my life to process the journey I have had thus far to get to this point.

Keep trusting your own unique journey!
And, cheers to the Class of 2017 & all new child life interns!

xoxo,

Child Life Jackie ❤

WHY Me & Sherry’s House

When I walked into Sherry’s House the first day of my internship, I knew I was home. I was greeted by a big black lab who sat on my feet. One of my officemates said she loved my smile and outfit. One of the little girls living there was sitting on the couch watching TV and asked if I was there to play with her.

(To rewind a little bit: This semester, I am fulfilling my internship requirement of my Human Services major. I am the Family Services & Special Events Intern at WHY ME & Sherry’s House. It is a non-profit that provides support for families with childhood cancer. We provide housing for families undergoing treatment, but many other outreach activities such as support group, family fun events, and oncology clinic visits. I visit patients at the oncology clinic in Worcester, spend time with the families living at Sherry’s House, attend support group meetings, and plan for special events.)

Throughout these past 7 weeks, I have experienced such a wide range of emotions.

I have experienced respect from the people who work there, and treat me like I am one of their co-workers and an aspiring young professional, not just “the intern”. I feel trusted by the staff; that I can follow through with a task, and am given the freedom to use my creativity in whatever that task is.

I have held a little girl in my arms whose bones I could feel on my lap, but knew how to JuJu on That Beat better than any college student I know. She gave me endless hugs, always asked to be tickled, and pretended to be a SuperHero when I lifted her to put away donations in the pantry. The bond we formed in just a few weeks is something words could never express, and just makes my heart want to explode with joy. I know that I have found my purpose & vocation in life; this is more than just a career. But, I have learned more from her than she could have learned from me. She is resilient and full of life, even though she may not have many months of it left.I have experienced heartbreak from seeing my buddy move, but relentless joy from the memories we shared.

I have experienced support from the community of families. The parent-to-parent support group gives families the opportunity to meet up with each other once a month to share a meal with other members of the pediatric oncology community. They all have different stories and are at different parts in their journey, but they have become a family through it all. They have a space to share their experiences and learn from each other. But, they are not defined by their diagnosis. During Vacation Camp Days, the kids had a chance to just be kids and do fun activities together. We had an aquarium bring a touch tank, followed by aquatic crafts. The kids did a Paint Nite, decorated cupcakes, and watched “The Secret Life of Pets”. When two sisters bring their stuffed animals dressed up in PJs and tell you that they planned their entire Feb Vacation around this, that’s when you know. (I don’t even know what you know. There are no words to describe the community!)

PLEASE CHECK OUT THE WHY ME & SHERRY’S HOUSE BLOG ABOUT OUR FEBRUARY VACATION CAMP EVENTS!!! –> https://whyme.org/family-posts/february-vacation-fun-camp/ 

I am on my spring break now, but will be excited to get back to planning for the Easter Egg Hunt and visiting my new friends at the oncology clinic. Please keep all my warriors in your thoughts & prayers! ❤

First Post: Intro!

Hi everyone!!!

My name is Jackie and I am currently a senior at Assumption College in Worcester, MA. I am a Human Services & Rehabilitation Studies Major with a Psychology Minor. I love figure skating, fashion, life chats, flowers, crafts, and having my own mini concerts when driving. :)

I have dreamed of becoming a Child Life Specialist since I was a little girl and said that I wanted to be a teacher for kids in the hospital. I have never looked back since that dream, and even dressed up in 4th grade in nurses scrubs with a lanyard that said “Child Life Specialist”. Most people didn’t know what that was, so I learned from a young age of how to explain what Child Life does!

When I was 16, I started volunteering at Boston Children’s Hospital in the Organ Transplant Unit. In August 2016, I completed my 6th summer as a volunteer, and got a nifty volunteer badge and baseball hat! It has been amazing to reflect on how much I have grown since I started volunteering 6 years ago, and how my passion has developed even more. Meeting children and families from all over the world has been such a learning experience. I have enjoyed every minute of learning from the CCLS’s I have met & all the little milestones I have experienced, even just seeing a kid walk down to the activity room. I also have been a camp counselor at Camp Sunshine in Maine. 11/10 would recommend Camp; there is no joy comparable to the memories that I have with the kids there.

Currently, I am an intern at WHY ME & Sherry’s House. As part of my Human Services major, we are required to do a full-time internship in either semester of our Senior Year, and I am so grateful to be doing mine at WHY ME! It is a non-profit organization, providing love and support for families with childhood cancer. We provide housing for families who are undergoing treatment, but so much more. We have parent-to-parent support groups, vacation week activities, movie nights, and visit the local oncology clinic. i have been able to plan some events for our families, attend the monthly support group, and meet patients while undergoing treatment. I LOVE this place and the beautiful smiles I have seen form after moments of tears. I had never been so close to cancer, and I see now how it affects families lives.

That is my intro to my passion for child life in a nutshell! Until next time! :)

xo,
Jackie ❤

PS! Please follow my Instagram Account! @ChildLifeJackie

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