I recently started dance choreography and was thrilled to share how the Community Footprints Project, a transformative initiative that uses dance choreography as a healing tool, helped heal our internal scars. They Gave My Son Anthony Xavier His Voice (and Dancer Moves)!
When you have a child with cystic fibrosis, you’re constantly managing treatments, doctor appointments, their overall well-being, and the emotional toll the illness can take.
But how much can a ten-year-old take?!
The emotional toll of cystic fibrosis, the fear, the uncertainty, and the constant management of treatments often leave scars that aren’t physical but leave just as much of a mark on our hearts.
The loss of several relationships has affected Anthony’s weight gain journey throughout his short lifetime.
These lost physical relationships, including Anthony’s father, brother, sister, and others, have resulted in deep hidden scars.
People often have scars that can be seen.
What about the hidden scars?
The ones that aren’t physical but leave just as much of a mark on their hearts?
It’s traumatizing to go through so many things in a short time. I felt hopeless and sad until I checked my email one morning, and tears of joy started to stream down my face.
Thanks to a heartwarming email from Marisa Ballaro in New York, the Founding Artistic Director of NYC-based Ballaro Dance.
I went to her website and learned about her many achievements!
“She is the Endurance Chair for the Cystic Fibrosis Foundation’s Tomorrow’s Leaders Greater New York Chapter.”
The more I read about Marisa the more overjoyed I became!
“Vice President for the Board of Directors for the SUNY Brockport Alumni Association and she is the Endurance Chair for the Cystic Fibrosis Foundation’s Tomorrow’s Leaders Greater New York Chapter.”
How was the Community Footprints Project made possible? By pairing with the Cystic Fibrosis Foundation!
“She received a $9,575 Impact Grant from the Cystic Fibrosis Foundation to lead a nationwide virtual project in 2024.”
I was impressed by Marisa’s background in the arts!
“Marisa is Founding Artistic Director of NYC-based Ballaro Dance: an organization committed to building community through the creation and presentation of modern dance while inviting its audience, often first-time dance viewers, to SEE, MOVE, & SHARE with the Company in an approachable, welcoming environment.”
www.ballarodance.com/about-1/
I jumped out of my seat when I read this! She found me through my article for the Cystic Fibrosis Foundation.
I received this email towards the end of May.
The Ballaro Dance Choreography: Community FootPrints Project
Anthony and I were virtually invited to join a wonderful community project that improved our lives and showed us the healing power of dance choreography and self-expression.
The Cystic Fibrosis Foundation, a beacon of support and understanding, funds Ballaro Dance, a testament to its commitment to our community.
Marisa’s website states, “We dance to engage with people, choreography to tell stories, and produce art to build community.”
This is so true!
These stories are now a part of our lives. Dancing to express feelings is amazing!
Marisa has a YouTube channel called Ballaro Dance, showing footage of her teaching and helping students express emotions through dance.
The community of choreography dancers is astonishing!
So many scars have healed beautifully internally, and now it was our turn to recover from our deep scar.
Dancing with expression is like a bird taking flight. You feel in control of your scar, and the anger and pain slowly disappears.
The cystic fibrosis community is enormous, and I can’t wait to continue meeting more friendly faces of people like Anthony who express themselves creatively.
Marisa created a brainstorming sheet to help us with our community footprints project. It was the perfect example for Anthony and me to grasp what we were doing.
We were both inexperienced with choreography but found it easy to follow along when Marisa showed us her techniques. Her words of encouragement helped us to express our story much better.
I will attach photos of the project sheet we danced to for our final dance, which you can see here on my Instagram!
Community FootPrints Project: Choreography Dancing to Express Emotions Positively
First meeting 5/22/24
6:30 p.m.-7:45 p.m.
Dance interpretation and choreography dancing assignment about something that had a major impact on us.
Our community footprints project will tell a similar story where we’ll describe what happened to us.
We start the dancing next week. Today, we made up a story about a fun ski ride.
Our short story making sentences about what we did was incredible:
- We woke up, got out of bed, and saw it was snowing outside.
- Then we got up and got dressed to go skiing.
- I couldn’t find my car keys!
- So, I retraced my steps.
- I went to the garage to see if they were there, but no luck.
- Suddenly, a bird flew inside and gave me the keys in my hand.
- The bird then wrote in the snow, here are your car keys; thank you!
- I went to the ski lodge and had a fantastic time!
This was a great example of how to get comfortable expressing ourselves with our bodies, and it honestly felt very natural.
It felt so peaceful to extend our arms above and below and move our bodies in different directions to tell the story of the ski trip.
Next week, we will work on a community project that has impacted us positively or negatively.
Anthony and I will do a choreography dance to the song, eternity, which describes how Rudy is no longer living with us. The deep scar it left behind is still healing.
Choreography dancing helps you express your emotions positively while doing something good for your body, mind, and spirit.
The Story of the Scar
Our Deep Hidden Scar Story Revealed: Unanticipated Separation
Last year, my son Anthony, who already faces the daily challenges of cystic fibrosis (CF), experienced a heartbreaking and unexpected loss of a close, nit-tight relationship with his big brother, Rudy.
I understand the pressure of having a brother with medical conditions got to Rudy. It is possibly why he did not want to be around so much.
Seeing his brother suffer made him suffer so much, causing Rudy an internal scar as well.
Rudy wanted to explore the possibilities of a life without a brother with medical conditions and ADHD and now realizes that he misses us so much.
Anthony’s older brother, Rudy, moved away to live with his father in Port St. Lucie after turning 13.
Rudy loves basketball, so Anthony and I created a story about dances related to music, art, and basketball.
The change caused me to write a song I thought would help us heal. It didn’t.
It’s called Eternity, and my good friend Kaius on Bandlab made the beat.
This abrupt change was made without our knowledge or consent, leaving us devastated and confused. I used this experience of pain to create a story about forgiveness for the community project.
I didn’t think a two-hour conversation three months before the month of May would shatter my world months later.
Rudy’s grandfather, who I always confided in, wanted to help me but did not explain that the change would occur immediately after my son turned 13.
I confided in him with things I believed would stay with us. I wanted to find a solution that would not tear my son away from me, but they had different plans.
Our families were close, and his grandfather always came to get him for holidays every year from when Rudy was seven months old and on other occasions so he could see his father.
In a million years, I would have never thought last summer would be so difficult, affecting both Anthony and me and causing weight loss.
Communication is Important! Unexpected Bitter Farewells
We are better this year, thankfully, but due to a recent surgery Anthony had after his birthday. The pain was so immense Anthony’s weight declined again. Recently, his weight went back up after three months since the surgery.
We are praying that we do not have to stay too long in the hospital this time.
However, the situation at the time was harrowing because it involved a trusted family member on Rudy’s father’s side who had betrayed our confidence.
I thought heavily on all these things as we started to create a story for the community footprints project that would help people hear anthonys voice.
Anthony and I were blindsided when Rudy called a month later, in June last year.
He wanted to inform us that he wouldn’t return home after the summer.
My cries hit the sky, and it felt like a sharp knife had been stabbed in my heart.
My mother cried, my sister cried, and we all cried about the loss of our relationship with my son. He 360’d, and many may say it’s the teenage years, but I know my son, who never behaves in such ways.
He wanted to try a year at his father’s new house—a house that I was unaware existed! I didn’t get to tour or see where my son would be!!
This news was shattering as a single mother who had raised Rudy his entire life. His grandparents were always there for us, and I am forever grateful, but I never believed they would do this without my consent.
I understood Rudy’s desire to explore new opportunities and get to know his father better. Still, the lack of communication and the sudden change felt like a deep betrayal.
The Hurt of Deep Betrayal and Loss of Relationships
Two short reunion months later didn’t help at all. Rudy’s grandfather brought him down in July to pick up some documents for the first reunion.
Rudy was thrilled to see me, his brother, and his cousins when we returned from the hospital for Anthony’s tune-up last summer.
It was extremely brief, but my son held onto me tightly, and I wanted to cry so much. I used this expression when I posed for dance moves.
It felt like a dream. Rudy missed being in my mother’s two-bedroom condo with us. We’re not wealthy, but the love and support we gave Rudy was immense.
The next was in November. I went to Port St. Lucie, a nearly four-hour drive. Internally, my motherly heart told me I was unwanted there even though they invited me. It felt like I was a stranger stepping on the bleachers.
They were all kind to me and took tons of pictures of us. However, the grandparents did not want me to take my son out, which was clear.
Backup Plan Put Into Action
I wrote Rudy an expressive letter the night before, pouring my heart into it about how I felt about everything while bawling my eyes out. The tears are still on the page.
I told him I would always love him and was sorry I could not provide him with the desired lifestyle. Having him at 18, a year after graduating high school, was big! It changed my life, and I was thrilled to be a mother.
However, I never planned to be a single mother struggling with the weight of the world.
I gave it to him to read along in an envelope with photos of his brother, him, and me.
The polaroids were of book club nights we had throughout the years, along with a gaming pillow I had gotten for him in December when he was alone.
The community project helped us to hold on to good memories and push away the bad ones.
You can see how thin I was in these photos. My weight dropped to 100 pounds.
I tried so hard to be a part of my son’s new life while supporting the abrupt change; however, my calls were often cut short, and his schedule was disorganized.
He either bragged about what he had on his Facetime or critiqued our looks, offering us haircuts and eyebrow shaping. Very materialistic now and not the humble boy I raised.
I was so disappointed.
His family told me I could call him anytime, but he was always busy when I did. ALWAYS busy.
He blamed me for not trying hard enough. I eventually stopped trying after the train wreck call in December.
A few embraces were given, and Rudy had to depart from me instantly after the game due to his grandfather’s ” plans,” knowing I was coming down to see him.
Couldn’t I have gotten an hour to take my son to lunch? I felt like a surrogate mother, and it hurt immensely.
The long paragraph texts his father and grandfather received will live with them forever.
I was extremely distraught and hurt. I feel I lost a part of me last year.
Emotional Toll and Weight Loss
The emotional toll on Anthony has been devastating, but the Facetime from his grandfather’s house was the one that shattered us completely.
I will not disclose the conversation, but I felt like I had been nothing in his life for 13 years.
It was like seeing a different person with my face. The horror of the things he said would live with me for life.
The worst thing was that Anthony was right beside me the whole time!!
I had to encourage Anthony, reassuring him he was not a burden in my life, although some days were more challenging.
I decided to build an online business by teaching and writing to make ends meet, and thankfully, transitioning to full-time writing has been amazing.
It was clear Rudy was angry and resentful, and it was now pouring out of him. I forgave him in December when my sister picked him up for a week for New Year’s, but it still cuts deep.
Anthony was already grappling with the heartache of his brother’s move, and this unforeseen twist of events only deepened his grief and sense of loss.
The overwhelming stress and sadness led to a two-week hospitalization for him, a heartbreaking sight for any mother to witness.
As for me, the situation took a toll on my health as well.
The sudden weight loss, stemming from my worries and anxieties, alarmed the doctors and added another layer of concern to our already challenging circumstances.
Navigating Weight Challenges Together with a Supportive Community
My lifelong struggle with weight, due to a sensitivity to formula as a child, makes maintaining a healthy weight an ongoing battle, too.
When I was born, I would projectile vomit from my nose and mouth and was found suffocating in my vomit several times in my crib.
My mother told me when I was born, the doctor said I would always be thin due to the projectile vomiting. I would lead a lifelong struggle with weight gain my entire life.
At age 33, standing 5’4 and 105 pounds, I believe it. Even after having two kids.
The recent fluctuation in my weight and its impact on my health has been a stark reminder of this vulnerability.
Anthony, Rudy, and Ginipher are watching a fun Disney movie.
We are both navigating uncharted territory. Anthony’s depression affects his appetite, while I’ve had to resort to shakes and fruits to manage my own health, a far cry from what either of us would choose.
I can’t help but feel a deep ache for what my son is going through, a pain no mother should have to endure.
My relationship with my oldest son has always been incredibly close despite the occasional bumps in the road.
As a mother, my priority was always his happiness, and I poured my heart and soul into providing for him.
The abrupt and painful separation from him feels like a wound that wouldn’t heal, leaving us with sleepless nights and a heavy weight of sorrow.
This experience has been a harsh reminder that life is unpredictable and that even those we love and trust the most can hurt us deeply.
Being a part of the cystic fibrosis community is amazing because they understand our struggles.
It’s a difficult lesson in resilience and the importance of open communication, especially when it comes to the well-being of our children.
I am grateful for the CF Foundation and the project we were able to participate in.
The community footprints project opened a door for self-expression in a way we have never seen.
Marisa is passionate about dance choreography and is the sweetest person. Anthony adored the classes!
For our final meeting, Anthony said the most thoughtful thing!
He said he wanted to do what Marisa does when he grows up and make a positive difference in the world like her. How amazing is that?!
More Scars: The Hidden Scars of Cystic Fibrosis
Anthony’s father, me, and baby boy are preparing for g-tube surgery
In addition, Anthony’s father sadly cannot be here and has been gone for six years now.
He speaks to him by phone when he’s with his grandma and writes him letters.
It makes us sad, but we can’t turn back time.
Anthony saw him last year with his grandma and aunt Tiffany in Virginia. They drove up there on a cross-country trip so that Anthony could see his father, which was helpful for him.
Aunt Tiffany with Anthony and Mama Dee, Anthony’s rockstar grandma
Anthony and Ginipher
His older sister, Ginipher, also moved away, leaving Anthony with another deep internal scar.
Both his siblings rarely reached out to him, and when we tried, nothing gave. It appears the new fashion is to forget the ones who helped raise you. We’ve only seen them a handful of times.
I was essential to Anthony’s sister’s life from age 8-11. Silence hurts, but we accept it and move forward.
Since Anthony’s father and I were never married, I have been a single mother raising Anthony alone. Living with my mother has been a blessing because we help each other so much, especially with Anthony’s care.
Grandmothers and More Family to the Rescue! Awesome Community of Support!
Mama Dee with her beautiful grandchildren, Anthony and Ginipher
My mother pictured with all her beautiful grandchildren: Nathaniel, Rudy, Nicholas, Nathalie, and Anthony; the youngest is baby, Ax
Both his grandmas are fantastic and always help me. I would not be able to do it without them.
We built a community of powerful mamas who help care for Anthony so he can have the best life possible. My mom and Anthony’s grandma, Mama Dee, on his father’s side, have blessed us.
Anthony’s grandma has lupus and bronchitis. She has weekly doctor visits, tune-ups, and battles, trying to stay alive every day.
Mama Dee, whose name is Denise, has tons of doctor’s appointments and empathizes with Anthony on a deep level.
He is extremely close to his grandmothers. Along with my awesome sister, Anthony also has help from Grandpa Gabriel, Uncle Gabriel, and Aunty Kiki, who always help us out. It takes a village!
Thank you guys for everything!! I mean it!!
So many changes started affecting Anthony, and the last scar, his brother’s, was the deepest one.
Dance Choreography and Healing Internal Scars: The Community Footprints Project
Anthony and Me (Marlenny Linda Writes)
The abrupt change in Anthony’s life left him feeling isolated and lost, but a beacon of hope emerged through Marisa Ballaro’s Community Footprints project.
Marisa, a compassionate and skilled dance instructor who advocates for cystic fibrosis warriors, became a guiding light for our family.
Through weekly Zoom sessions, Marisa expertly led us through a creative process where we transformed our emotional scars into a powerful story expressed through dance. It was an unexpected journey of healing and connection.
The Community Footprints project, funded by the Cystic Fibrosis Foundation, went beyond dance choreography.
It fostered a vibrant group where dancers like Anthony could express their emotions and experiences through movement.
My niece Nathalie even joined us; they became the youngest participants to shine in the project.
Powerful Community: Dancing Made Us Feel Alive Again!
Anthony and I at the doctor’s having fun
Week after week, Anthony and I delved into our internal scars with Marisa’s gentle guidance.
Anthony poured his longing for his brother into a story that came alive through dance.
We found a way to express our sadness, anger, and hope for healing with each movement.
The Community Footprints project has been a transformative gift.
It has empowered Anthony to find his voice through dance and connected us with a supportive community that truly understands the CF journey.
Watching Anthony express himself through movement has been inspiring. He has grown from a cystic fibrosis warrior to a confident dancer, artist, and storyteller.
This project has opened new possibilities for him and our family, and we are eternally grateful for its profound impact on our lives.
Thank You, Marisa, and The Cystic Fibrosis Community Footprints for All Your Continuous Support!
Thank you, Marisa, Ballaro Dance, and the Cystic Fibrosis Foundation, for creating this amazing project.
You have given us so much more than dance steps; you have given us hope, healing, and a community that feels like home.
The video Marisa created for our final Zoom left us in awe. Seeing how powerful the dance community is inspires me to continue creating magical music videos expressing myself.
Anthony, his father, and me on the Fourth of July Downtown
Seeing the CF community via Zoom and watching our magical stories together was beautiful. I also enjoyed watching the Ballaro Dance student’s performance via video on Zoom.
It was beautiful!
I can’t wait to go to New York one day, meet Marisa, and dance in her studio with her and Anthony. Dancers are passionate and full of stories and life!
Dance choreography lifts our spirits and makes us feel great! Thanks to Marisa’s instructions, I started working out and doing more Yoga!
Although I am still thin, I am very fit now!
If you want to learn more about Ballaro Dance, click here to learn more about Marisa and her amazing dance studio.
Let’s continue to dance and express ourselves through beautiful stories while healing internal scars.
Heartwarming Friendships for Life!
My sister Magnolia and Anthony. Rudy, Anthony, and Ginipher
I am so happy I received Marisa’s email about joining the community footprints project.
I never knew how impactful it would be to me. Marisa plans to come to Orlando to meet Anthony and me, hopefully in the fall. We’re excited and can’t wait to meet.
We also did a final Zoom gathering to celebrate the community footprints project and met other dancers!
We have found a heartwarming friendship for life with Marisa and the Cystic Fibrosis Foundation.
Thanks to Marisa, I have been able to channel my emotions and dance moves in my music videos, and I have generated fantastic feedback.
I use pulling, pushing, and hugging expressions to tell stories through my songs. Check out my YouTube channel for inspiring hits I created using beats from various producers I work with.
Dance choreography will continue to be a part of our lives forever along with the cystic fibrosis community. We are due to reunite via zoom at the end of this month. How exciting!
You can read more articles about the cystic fibrosis community here! Also, check out our Great Strides walk article with the Cystic Fibrosis Foundation.
Thank you for reading! Rose Up for cystic fibrosis! Let’s fundraise and find a cure for CF! Take care!
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Marlenny Linda is more than just a writer; she's a passionate bilingual advocate for families with children with medical conditions. With a background in teaching English (TESOL/TEFL) and a Bachelor of Science in Liberal Arts, she crafts engaging, SEO-optimized content that informs, inspires, and connects with these families.
Her specialty is long-form content, where she dives deep into the topics that matter most, from navigating educational resources to fostering a fulfilling life for your child. Marlenny's innovative approach keeps audiences engaged and coming back for more.
