Welcome to the Chelbug Fest Blog!

"Christmas Time"

December 24, 2019 - By: M'riah Lormand

As I sit here on Christmas Eve with my to do list, cup of hot tea and all the Christmas lights on, I can’t help but think about how Chelsea would prepare for Christmas and all of her holiday traditions. Her holiday planning started right after her birthday in August. She made a list of what she wanted, what she was giving to everyone, what we needed to go shopping for... you get the picture... She made Christmas gifts for her family and friends each year. We would get our supplies and start crafting each special gift for her to hand out. She would laugh at me for my lack of crafting talents, but would guide me through the process. As soon as Thanksgiving was over, we would clear out her room and prepare for the Christmas explosion that was about to happen. Big J would bring down the countless boxes of decorations, we would turn up the Christmas music and her fingers would start pointing telling me where to put things. Every wall, every flat surface, every inch of her room was decorated with something special to her. She would tell me stories of where each item came from. It would take us days to make it absolutely perfect! In the month of December, if we weren’t working on those special handmade gifts, we were watching Christmas movies, talking about our Christmas memories, planning a Christmas activity...she lived and breathed Christmas. Every year, weather permitting, we would volunteer at Acadian Village. We would dress up and collect pre-purchased tickets at the entrance. Watching the joy of people go through the gates would warm our hearts. Then at the end of the night we would stroll through the village taking pictures and enjoying the sights and sounds of Christmas! I loved our time together through the holidays and cherish my memories with her.

Now, as I sit by my own tree with several special ornaments from Chel, I’m reminded about our special times together and smile knowing that she’s watching over us and having the most magical Christmas of us all!

Merry Christmas to you and your families!

M'riah Lormand

"Pool Side Memories"

November 25, 2019 - By: M'riah Lormand

Getting Chel ready for the pool was quite interesting, but she always had a plan! As we would walk and roll up to the pool, her eyes were scanning to see who would be the lucky guys to get her in.

She would point them out and they would come, no questions asked to make sure this princess got what she wanted. They would oh so carefully get her from her chair into the pool on a float and make sure she was super comfortable.

"Is the sun in your face?"

"I’ll hold an umbrella for you!"

"Would you like for me to splash some water on you to cool off?"

"My pleasure!"

Anything she asked for, they were always willing to assist with a smile. (She always met the best people at camp!)

“21 Years & Counting”

November 18, 2019 - By: Jason Broussard

Somewhere around March 1998, I took a challenge that changed my life forever, for the better! I was a junior in high school and one of my friend’s sister did a small presentation at our monthly 4-H meeting. She had attended MDA summer camp and was recruiting new counselors, especially boys. So I accepted the challenge to submit an application and a few short weeks later I found myself in an interview with someone from MDA being asked the question, “Do you truly want a challenge or would prefer to take an easier camper?” My confident, yet not so confident, answer was “I want the challenge”.

Little did I know that this would be a week that would help mold me into the man I am today. My first camper, Justin, had Duchenne MD and I would be his arms and legs for the week. It was truly a life changing week for me and I have never doubted my decision to attend camp since then. We would become friends, talk a few times a year and pick right back up where we left off every summer when we would attend camp. Unfortunately, the disease would take him from this earthly world we live in much too soon but I was honored to speak at his funeral. One of the hardest things I’ve ever been asked to do, right up there with carrying my maternal grandfather (a WWII POW) to his final resting place.

I continued to attend camp and became a Cabin Leader which was also a memorable few years putting on skits, sleeping very little and getting to see all the kids smile because of the hard work and time we put into planning and executing our goals at camp each day. Somewhere along the way, my younger brother would join me at camp and that has only brought us closer through the years. Then the “merger” happened. All campers within the state of Louisiana would attend 1 MDA summer camp where volunteers, staff members and sponsors would need to mesh together to make this possible. I was asked to step up and become a Program Staff member during this time. I was nervous and honored after seeing many of our Program Staff perform “impossible” tasks at camp every year. These individuals were my idols and truly who I looked up to as I grew each year at camp.

The transition was much less chaotic than we all had planned for and we now have a much larger camp “family” that spans from state line to state line, North, South, East & West. I continue to attend camp because it truly is my “week of heaven”, just as it is for the campers! I close down my business, take vacation from the fire station and leave my own children behind to drive through those gates and reset my mind for whatever the world throws at me. There are no boundaries for these campers, as long as safety is maintained! No one even sees their braces or wheelchairs, they are all kids in our eyes. They hang out, swim, ride horses, have water gun wars, sing karaoke, dance and everything else a kid deserves to do at summer camp.

In closing, I will share a memory that touched my heart this past summer while away at camp. As a single father, I had to leave my daughter with a close friend for Father’s Day weekend and while Emmie was with her friend, the mom overheard the girls talking about MDA camp. They were planning when they would be able to attend camp as camp counselors and what they hoped to experience while there. Mind you these little girls are 7 & 8 years old but through my stories and experiences already look forward to joining in the MDA Camp family. I truly look forward to one day “passing on the torch” to my own daughter to carry on what I have done for so many years thus far.

Camp Starlite Love to All!

Jason M Broussard

Crowley Fire Department Captain

Owner of Bayou Garage Doors

MDA Camp Program Staff member & “McGyver”

"Tub Chair"

November 11, 2019 - By: M'riah Lormand

Chelsea’s second year at camp (my first year), somebody forgot to pack a tub chair. After asking around for one we can use, we had to put on our thinking caps because this girl could not go a whole week without a bath!

Take 1 - The tub had a wooden bench that folded across to sit on, but Chelsea couldn’t sit up without assistance and it would hurt her bottom. But...We could put a towel on the bench and lay her on it...except she was too long and didn’t fit. So she had a half bath (the half that was in the tub) while I held the other half of her body that was sticking out of the tub. We were laughing so hard our stomachs were hurting by the time we finished bathing her and got her back in bed! Chelsea said “We are NOT doing that again!”

Take 2 - (I’m not sure whose bright idea this was.) I get in a bathing suit and lay in the tub with a towel on top of me to become Chelsea’s tub chair. (Oh the things I would do for this girl!) Getting her in was no problem, she thinks it’s hilarious. Then proceeds to tell us, she needs the bathroom! Oh no! Now what? No time to get her out of the tub, so our speedy nurse gets a diaper and puts it under her...now we wait... She can’t stop laughing as she says “It’s just gas.” So now we can continue to bathe her, get her back in bed, and dressed. Chelsea says “That wasn’t TOO bad!”

Take 3 - (New nurse this time.) She gets a pool float and puts it in the tub to lay Chelsea on. Chelsea now becomes a Chel-taco as she’s folded in the float. But, she gets a bath and is safely put back in bed.

Moral of the story - DON’T FORGET THE TUB CHAIR!

Love,

M'riah - Camp Counselor of the YEAR!

"My first Camp Counselor Experience"

November 4, 2019 - By: Claire Carriere

Seeing Chelsea fall in love with Camp always made me wish I could go. As the sibling of someone with a physical disability, there were very few things I was openly jealous of my sister for (recognizing much of the time, it pained me that things I could do, she physically might not be able to), but camp was one of those things I always wanted to be a part of.

Chelsea would come home after a week of being at camp, absolutely RAVING about all of the fun they had, and of course, all of the boys she danced with... and it didn't just stop there, Chelsea's friends and counselors from camp would come to visit year 'round - showing me what true friendship looked like as I grew up and ached to have that same experience of pure joy that I saw her bring home and experience year 'round waiting for camp to come.

By the time I turned 16 (at the time, this was the age requirement to be a camp counselor), Chelsea had already aged out of being able to attend camp and as much as I wanted to go as a counselor, I knew with Chelsea being at home not getting to experience the camp she absolutely loved, I couldn't go and have a blast without her being there. When she passed in 2017, I decided there was no way I was missing camp in summer of 2018.

Fast-forward to spring of 2018, when Ms. Molly sent out camp applications and I was absolutely THRILLED and terrified at the same time to fill out my application: "Would my camper like me? Would the other campers have fun with me? Oh my gosh.. what if they think I'm lame... will I be able to give them as great of a camp experience as Chelsea's counselor and friends gave her?" and worst of all... "What if I let Chelsea down?" I must have cried an hour before leaving for camp that June, absolutely terrified of what I would find when I stepped foot into Camp Starlite.

(Spoiler Alert: my fears before could NOT have been further from the truth of what I experienced that week at camp and since then.)

On the first day of camp, I met the sweetest blonde-haired, beautiful inside and out, talented, and courageous young woman named Harleigh. Knowing very little about Harliegh before, I thought she might have been shy - which, maybe a little at first, but by the end of the day we were tearing up the dance floor at the ice-cream social to all of her favorite songs. My nervousness and fears melted away as the relationship that started as strangers blossomed into one of my favorite and most dear friendships as the week went on. Bonding in the most fun ways occurred as we cheered our cabin on in various events, ate all the best snacks, bonded over our love of stuffed animals, participated in water wars every day at the pool, passed tons of notes in "friendship mail", and of course continued dancing the days and nights away! Harleigh showed everyone at camp, and consequently the world, the boldness of the kids that attend camp and the ways in which they can not be limited by a diagnosis or disability. She teaches me every single day what it means to be brave, and I tear up at the thought of how lucky I am to know Harleigh and so many of the other campers who have changed my life in just the short 2 years I have come to know them.

Is camp better than Disney World? Oh absolutely. Is it the most joyful place on earth? For sure, 100%. Will I ever not go to camp? You would have to hold me against my will, genuinely. After my first week at camp, everything Chelsea had raved about and held close to her heart made total sense. In many ways, I felt like by going to camp, I got to know my sister better and see a portion of her life that not many others got to see - a very special one, that impacted the kind of person she was and determination she had for helping and advocating for others. My life has been changed by the campers, counselors, and staff I have met since Camp Starlite 2018 for the better, and I could not imagine a world without camp in it. By supporting Chelbug Fest's efforts, not only are you keeping my sister's legacy alive, but you are also helping to make dreams a reality and are allowing these kids to continue to prove the world wrong in what they can experience, achieve, and believe in.

Camp Starlite love always,

Claire Carriere

"Why I go to Camp"

October 28, 2019 - By: Keri Blanchard

Growing up, I heard so many stories about MDA summer camp. And when camp time came around, I would beg my mom to let me come with them to drop off my brother, Mikey. I couldn’t wait until I was old enough to go myself. You see, my brother was a camper. My brother was born fully ambulatory. He was an energetic (sometimes troublesome) little boy. The first time he fell, he was seven. By the time he turned 8, he was fully wheelchair bound.

Unfortunately, in 1994, there wasn’t as much research and advancements in Muscular Dystrophy, so he wasn’t diagnosed until he was sixteen. After years of testing and doctors, Mikey was diagnosed with Friedreich Ataxia. Once we finally had a diagnosis, we were able to connect with the MDA and Mikey started going to summer camp. It was his favorite week of the year.

You see, at home, he was limited. It was hard to go places and to do things while having to bring a wheelchair and all of his equipment. At camp, he had no limits. He could do whatever he wanted. I spent years seeing his eyes light up when he talked about camp and I couldn’t wait to go as a volunteer so we could have stories to share together. Little did I know, I’d never get to share the stories with him.

On May 14, 2009, my brother passed away. He was only 22 years old. It’s a devastating reality for so many families in the Muscular Dystrophy community. So I decided as soon as I could volunteer at camp, I would. If I could contribute one week of happiness to one child who suffers from this disease, I would. So in 2011, I went to camp. It was everything I could have hoped for and more.

The privilege of taking care of these children is indescribable. These kids are an inspiration that I carry with me everyday. What I can describe is the joy camp brings. I have seen a child who had never been underwater in a pool, dive for the first time. You see, he was on a ventilator that couldn’t get wet. They waterproofed his ventilator so he could dive. I’ve heard countless stories like this one. I’ve seen campers fish for the first time, ride horses for the first time, even go to their first dance. Things that we take for granted everyday happen for these children at camp. And it is an honor to get to be a part of that. And it’s the magic that brings me back every year.

With love,

Keri Blanchard,

Cabin leader for the Littles

"MDA Summer Camp:

Rainbow Camp, Camp Starlite"

October 21, 2019 - By: Randy Hopper

IGNORANCE:

The Oxford dictionary defines ignorance as: lack of knowledge or information. What a way to start a blog on an awesome week, huh?

I grew up watching the Jerry Lewis MDA Labor Day Telethon, all the music, stars performances, etc. were amazing. Seeing the companies and people making donations and the monies raised was awesome.

As I aged, I got involved in raising money for MDA representing the Harley Owner Group (HOG) and being involved in the local Telethon. Even though I was involved and thought I understood and knew about Neuromuscular diseases and MDA, it wasn’t until that first full week at camp that I realized my true ignorance.

All this time I thought it was about the money, which in a small part this is true, but I did not have all the knowledge and information as to what all this really represented.

As a "sponsor" I was able to visit Rainbow Camp and see how the kiddos interacted with each other and their counselors. After three years of doing this, I felt the desire to do more, although still ignorant.

My first full week at Rainbow Camp, now Camp Starlite was in 2006. This turned out to be the most amazing place I had ever seen! The kiddos were kiddos, nobody looked at them differently, they were just kids.

In this first year at camp all week, this one young lady, whom I had seen at the Telethon each year unknowingly cleared up my foolhardiness.

This young lady was Chelsea, whom this enduring event is carrying her name to continue to make MDA Summer Camp great.

Chelsea show me that her "disability" did not stop her, this made me realize that she was just another intelligent individual, she just had this "disability" that made her body not cooperate with her beautiful mind.

They say Disney World is a magical place, but I have to disagree, MDA Summer Camp is the true magical place. Even at Disney World these kiddos are looked at as being "different." This is not the case at Camp Starlite, everyone is the same, magic truly happens at this camp, if one of the camper want something (and it will not hurt them) it happens! The word NO does not exist in this magical place.

This camp helps the kids build confidence in themselves. I have seen amazing growth and changes in them in just this short week.

One example is a brother and sister pair, the sister was just ok with the swimming pool, the brother was not. With the help and encouragement of his counselor and 4-5 other counselors, within two days he and his sister were jumping off the diving board into the pool! Such an amazing thing to see. This is just one little example of the magic that happens at Camp Starlite.

A huge shout out to Chelsea for teaching me about neuromuscular diseases and clearing up my ignorance.

-Randy Hopper

(a.k.a.:

Mr. Randy

Cotton Candy Randy

Volunteer

Activity Leader

Senior Staff

.....and some that I cannot put in print!)

"My Camp Experience"

October 14, 2019 - By: Alyssa Schwartzenburg

I had the amazing opportunity to be able to attend MDA’s summer camp for about 12 years throughout my childhood. I know there are a variety of different types of muscular dystrophy. From my own experience as someone whose disability is extremely obvious to others considering I have a motorized wheelchair though, being able to go to a camp and be social without having to feel like I’m going to stick out like a sore thumb and be the ONE person who is OBVIOUSLY different was definitely a much-needed experience growing up. I was able to be me without being the girl in the wheelchair or the disabled girl.

At camp, everyone was “different” which essentially meant we were all similar. I also know from meeting others at camp that often children with disabilities don’t always feel comfortable with venturing away from their caretakers. Also, sometimes their caretakers aren’t comfortable giving them these opportunities because of the lack of education around disabilities within the community at large, causing fear over a child’s wellbeing. I feel that MDA camp helps to reduce the fears of both disabled children and their caretakers by having counselors assigned to campers, specifically to ensure the health and safety of each child so that the kids are able to focus more on meeting new friends and gaining new experiences. I know I still talk to a ton of both campers and counselors that I met from my time there and they are some of my best friends!

Having a community of others with disabilities around my age to share knowledge and even our struggles with has been so helpful, from talking about high school drama to navigating the world of government programs. Having counselors and staff present without disabilities who were so devoted to my happiness also helped me to feel accepted by others, even though we may not have the same abilities. I would highly recommend anyone with a disability to attend a summer camp they may qualify for such as MDA camp! This camp, among other things, has helped me to be able to live an independent life as an adult with a disability without sacrificing the basic happiness that everyone deserves.

With MDA Camp Pride,

Alyssa Schwartzenburg

"Camp Stories - Edition 1: Are We Lost?"

A Memory from Chelsea Carriere

Chelsea always loved chaos... mostly because, she loved the laughter that followed it.

Part of what made camp so special to Chelsea was that it was a portion of her life where not everything had to feel micro-managed, like much of her health did. And from this "freedom" she felt at camp, there were plenty of funny stories that resulted...

Here is one, shared in Chelsea's own words:

"Here's a funny story from my life...

So it's October of 2013 and my camp family is having a reunion in Shreveport Louisiana at our old camp ground. So I talk my 2 friends into coming with me. One was my CNA and one was my former councillor. So we drive to Shreveport , all is well. We are having a blast that week, everything is working, going right, we're getting along, all good. One of the nights we all decided to have a huge bonfire and talk about our memories of camp. Well, we're all balling our eyes out at all the memories. Now I don't know why, but it never occurs to me that hello I'm on a ventilator and have been all day. Well, the vent runs on battery power and eventually that battery will run out and that's not good. So, we're all deep into the stories and memories when we're zapped back to reality by my vent alarming low battery. My councillor, 'M'Riah Lormand, who has worked with me as my nurse in the past, gets this frozen look on her face like, "what do we do?"

Nicki (my CNA) was panicking. (She can't hide her feelings too well.) So, we jumped in my van and headed back to the hotel to plug in. M'riah sits in the back with me in case my vent dies and I need to be Ambu bagged for air. Now , mind you, these are 3 women who have zero scene of direction. So M'riah proceeds to give Nicki directions to drive back to the hotel. I had confidence in M'riah that she could bag me if need be so I'm fine. Anyway, we're driving TRYING to get back, now I don't know how the heck this happened but, I just happen to look out the window and I see a huge sign that says........ welcome to TEXAS!!!! so I very calmly say "Uh....guys, I think we have a slight problem here...." So we eventually got back to the hotel, plug in, and end up laughing about it for an hour straight.

Moral of the story,

A crisis situation is NOT the time to learn your way around a new place."

-Chelsea Carriere

"She's My 'Why?'"

September 30, 2019 - By: Sarah Roblow

I could write a whole series of books that detail how Camp Starlite has affected my life, but neither of us have all day to read them. I’ll narrow this post down to one of the biggest blessings I’ve received from camp: my sweet Sydney! Sydney and I met in 2016, my first year as a counselor for MDA camp and her second year as a camper. My nerves over caring for a "medically-fragile" child for the week and my fears that she may hate me melted as this petite 11-year-old came rolling to the front of camp in her hot pink power-chair with hot pink streaks in her hair. This girl LOVED pink!

Throughout our first camp together, I got to know her sassy, silly, creative personality. She told me about her love for rock music (thanks to truck rides with her dad) and arts and crafts. We shared laughs and inside jokes (PIZZA!) and ate probably way too many bags of chips. I left camp that year knowing that I would be back, not only for myself but for Syd.

After four years of camp, I’ve watched Sydney grow from a shy 11-year-old pre-teen to a confident 15-year-old young woman. I’ve watched her try new things, conquer her fears (by telling jokes on stage!), and make new friends. I’ve walked (and even jogged) all over that campground with her hand in mine, and I’ve watched from the back of the group as she’s let go of my hand to catch up with her Bay 7 gal pals in the front. While part of me misses having her hand constantly in mine, THIS is what camp is all about: allowing these kids the space to grow, to reach their full potential, and to gain confidence in their identities. It’s the reason I keep coming back each year. Well, part of the reason...I’ll always come back for Sydney.

With love from a future pediatric neurologist,

Sarah Kate Roblow

"Why Chelbug Fest?"

September 23, 2019 - By: Michael Vincent

Lifelong friendships share so much in common. Maybe you like the same Colors? Maybe you like the same genre of music? Or more importantly, maybe you have the same heart for a change in something that sparks a fire and brings passion and supports awareness towards something you both feel strong about. Whoa! Now that’s more like it!

Hello to ALL! My name is Michael Vincent and I have been titled many titles in association with CHELBUG FEST such as, “Founder” or “Member of Board of Director’s” oh and probably one of the most common and by far the most professional… wait for it… “The guy behind ALL of this” haha (Thought I was going to say something else did ya?!) But in all honesty, all I set myself out to do was, make a lifelong friends dream of doing anything and everything she possibly could to help other differently-abled people in our community, in a similar situation as her live life to the fullest!

Chelsea was a Lifelong friend of mine and I mean from like before either of us could even talk. Both of our mothers grew up together, attended school together and became lifelong friends themselves before we were even thought of. So close of friends, that they consider themselves sisters. I’m sure it was always a conversation between the two of them, that their children would grow up together, and attend school together, and I’m here to say that definitely became a reality in May of 1991 when I was born. You see, Chelsea was older than me just just shy of a year, but we were close from the very start. Chelsea and I would sing karaoke, Watch T.V. shows (Mainly the shows she only wanted to watch). Puzzles, Painting, and of course she would always beat me in UNO… Every…Single…Time! Looking back, I always heard the term “True Friendship” and I was surely blessed at an early age with that from Chels.

Growing up I was raised in a judgement free household, and learning in that environment you see everyone for their heart. It may sound unorthodox to some of you reading this, and I hate to use the term "disabled", but I never saw Chelsea’s disability. I truly believe I never saw it because she never let it stop her from accomplishing what she wanted to do. But the most beautiful part of her soul that I can recall is that she wanted to educate everyone of her condition. She wanted people to understand that people “like her” are still people. That without understanding there is judgement, and without common interests the will to even try to understand is a very slim chance. I said that last sentence to myself over and over after my best friends funeral.

I went up to Aunt Wendy, Chelsea’s Mom, I call her aunt because as I said before her and my mom were so close of friends they were considered sisters. I asked for her blessing in using the nickname we all had for Chels that everyone has grown to know… Chelbug.

Then I went to see Chad, Chelsea’s dad, to ask for his blessing in use of the name as well. With the family’s support I began forming the 1^st annual Chelbug Fest.

Did I question myself if I could make it all happen… ABSOLUTLEY! Did I ever second guess, not intentionally. I knew the/our family needed this as a way to help with grieving, but also I knew it would keep that spark alive that Chelsea always brought out in everyone. I kept saying to myself, “without understanding there is judgement, and without common interests the will to even try to understand is very slim.” That’s when I turned to what I love, Music! Music has always been a part of my life. But deeper than that just think of this: if you were to put one person of every kind, and I mean every kind- different skin colors, different beliefs, sexual orientation, political views, I mean literally people who would never give each other a second of their time- let’s put all of them in a room and play just one 2-3 minute song that they all love, Now step back and look around. Every person in there that would never speak or listen to any walk of life that is in that room with them, was brought together through music. They all have that same interest in music which then can further the will to try and understand one another. Music is a universal language that brings people together. That’s the piece of leverage I needed to kick start Chelbug Fest.

The Inaugural Chelbug Fest 2018, The very first one. Was held at my parents residence on the same grounds Chelsea’s graduation party was held. I made it a purpose that I wanted to bring back some old memories there of Chels like having all the men of the family dance to Shania Twain like she made them do every single birthday except this time for “tips” that would go towards our final tally as a donation. (Reading that last sentence back makes it sound very weird. But I swear, it was hilarious, you just had to be there) And setting up Mrs. Viv, Chelsea’s grandmother, to be sprayed with silly string Just like Chels had Done at her graduation party. Even having the microphone passed around during my band’s set so everyone could sing “Friends in Low Places” by Garth Brooks as if it was one big Karaoke party that Chels would’ve loved. I wanted Chelbug Fest to become a reality to raise money for Camp Starlite every year because that was Chelsea’s favorite week of every year, but also for the first Chelbug Fest to show that we may have something here that could help our local muscular dystrophy community out drastically!

It was a huge success of over $3k and was the perfect way to kick off our annual festival. We are here to fill that void in our Community, we are here to better our communities understanding of Muscular Dystrophy, but most of all, we are here to fulfill my Best Friend’s legacy in helping one another in every way we possibly can raise awareness and bring understanding of a medical condition to our community!

To my best friend, big sis, beautiful soul, Chels! I love you and can’t wait to see your touch on Chelbug Fest each and every year!

with Chelbug Fest love,

Michael J. Vincent

"Camp Counselor to Best Friend"

September 16, 2019 - By: M'Riah Lormand

How do you spend your Labor Day weekend?

Growing up, my family always watched the Jerry Lewis Labor Day Telethon. We would put mattresses on the living room floor and camp out all night. We would laugh and cry and I would ask lots of questions because it just didn’t seem real to me. How? Why? My mom would tell me stories about people she knew who had MD and how she used to help raise money for MDA. I remember thinking “this couldn’t happen in real life, just on tv, or to other people.” Then one day this tv world became real for my family. I was given a front row seat to how devastating this disease really is.

My aunt was diagnosed with ALS (one of the many forms of MD). I was young at the time, around 11 years old. I remember going with my mom and grandmother to help care for her and her family. I watched her muscles weaken, which made everyday tasks difficult and eventually impossible. Her family rallied around her and helped as they could with her care. To keep spirts high, the women of the family all got together and took her shopping. It was the first time I saw just how difficult it was for her to get around...getting in and out of the car, into her wheelchair, feeding her in the car (she had a feeding tube), trying on clothes, and then getting home and getting her settled in bed. It was a full day of laughs and cherished memories. Within 2 years of her diagnosis, she was called to her heavenly home.

Around that same time, a good friend from church was diagnosed with Friedreich’s Ataxia (another of the many types of MD). A few years went by and I learned more about how FA is a slower progression than the ALS I had just witnessed. We had time...time to be kids...go to homecoming...church events...youth group. One night while bowling, he was talking about this camp he went to and that he thought I would be a good person to volunteer. I was immediately interested and wanted to know more. He said it’s a camp for kids with MD and each camper is paired with a counselor to assist with their needs for the week. “Sign me up!”

I put in an application, had an interview, and was paired with Chelsea. Little did I know how much this would change my life forever.

Because Chelsea was on a ventilator and had high needs, she went to camp with a nurse and we all slept in the lodge instead of the cabin with the rest of the campers. We bonded quickly and became life-long friends that first week at camp. Although she would tell you that she and her nurse thought I would not return the next year because I would call my mom every night. (HAHA!) It was a week I will never forget!

Chelsea made the most of every second she spent at camp. She didn’t have a favorite activity, she had a favorite week of the year! She said it was better than Christmas...and if you knew Chelsea, this was saying something. From hand picking guys to help get her in the pool to running over anyone in her way during a power soccer game, she was nonstop all week.

Every year she would return from camp with stories to tell her friends and family all year long! If you haven’t heard those stories...stay tuned...

After Chelsea graduated from camp, it was hard for me to return without her there. It took several years before I was emotionally ready to return. Then I met a girl named Aubree and my life was once again changed.

Like most parents, Aubree’s parents didn’t want to send her to camp because nobody can take care of their child like they can. (Truth!) She was a little shy and had difficulty expressing her needs. In time, I got to know this family and how to care for Aubree so we could go to camp together. It took a couple of years, but we finally made it to camp!

While in the cafeteria, Aubree’s favorite song was playing (Let it Go!) and she yelled “LOUDER!” It was in that moment that the once shy little girl, that I knew, grew her own voice and let it shine for all of camp to hear! She sang in the talent show that year, and every year since. She now has a different counselor, who is younger and able to keep up with her. I see a bond formed between them like Chelsea and I had and it makes my heart sing!

Camp is one of those places that you can’t explain, you have to experience it for yourself. The bonds you make at camp are the most special. God has a plan for me, and I’m so blessed that he made this camp part of my story.

Chelsea’s friend & Camp counselor,

M'Riah Lormand

"You tell me I can't, I'll show you I can"

September 9, 2019 - By: Claire Carriere

Wow, the first blog post ever! We are so excited to use this platform to get to share inside looks at all things Chelbug Fest, Camp Starlite, local Muscular Dystrophy stories, and our fondest memories of Chelsea's life. You'll get to hear from family members and friends of Chelsea, campers and camp counselors from Camp Starlite, community members that have been impacted by Muscular Dystrophy, and more! We hope to make you feel like a part of the family, right here, where we can continue Chelsea's legacy to advocate and empower you to know more about M.D., and reach goals that once may have seemed impossible.

So let's begin- this morning, I was hanging out with the LIFE Program on UL's campus. The LIFE Program is an on-campus educational track for college-aged individuals with developmental and intellectual disabilities, such as down syndrome and autism. I originally got involved with this program after Chelsea's passing because I missed the daily empowering mindset that I was lucky enough to experience being Chelsea's sister that had caused her to want to succeed even in the face of trials, or even in situations where people are constantly telling them they "can't" achieve what a "normal" person can (which, honestly, who is considered "normal" anyway???). This morning, one of the students I mentor in the program said "For this Motivation Monday, I want you all to know that even if it is a bad day - it is important to keep a positive mind set. Being positive is important." Bam - instant flashback to quality time with my big sister.

Chelsea's room in our old house was right next to the garage door that I would walk through when I would come home from school - and it would never fail, she would call me into her room the second I got home. While most days were good, sometimes I would come home after a bad day and try to just slide past her room because I didn't feel like talking... well, for those of you who knew Chelsea, you know that that never worked out very well. I would go into her room on these bad days, and put on a happy face because, how on earth could I complain to her when she literally spent her day in bed, in pain, because of her condition? How on earth could I complain about a bad day, when she is facing trials way harder than anything I could imagine? To my surprise, every single time, she would see right through me and not let me leave her side until I told her what was wrong. And every single time, she would never make me feel bad for my feelings and she would always tell me that it was okay to feel how I was feeling. However, she would tell me what wasn't okay, was to sit and wallow.

If you knew Chelsea, you would know she would do this really funny and sometimes annoying thing (I'm her little sister, so I can say that) where she would rub her right thumb and pinky together and call it "The World's Smallest Violin". Once you had gotten your feelings out, and she listened and gave you her advice on what to do next - she would play that "violin" and tell you to get back up, and try again. Reshape your mindset, and get back to it! I think this mindset fully embodies what I carry with me in Chelsea's memory, and fully embodies what Chelbug Fest aims to do - to recognize where we can lean on one another in the hard times, then ultimately help others see the beauty in the difficult, and the beauty in what is diverse. In the times where we are told we can't, we show them just how well we can, just like Chelsea did.

So today and this week, I challenge you - where can you be gentle with yourself then pick up the pieces? Where can you recognize beauty in your struggle? Where can you find motivation to get back up and try again? Have an amazing day, and thanks for reading!

With love from a little sister,

Claire Carriere