The PWS Mom’s Retreat in Park City, Utah was a wonderful opportunity for 100 moms of loved ones with PWS to come together for laughter, tears, comfort, support, and connection. Nestled amongst the beautiful Wasatch mountains, some moms relaxed by the terrace fire pits, some explored the quaint coffee shops and artisanal stores of the old mining town, and others hiked off into the hills for some exercise and stunning views. All came together for mindfulness, sharing, journaling, art, delicious food, wine tasting, and authentic connections.
We know how challenging it can be for moms to leave their family at home and take time for themselves. To shed the layers upon layers of responsibility that have built up since their initiation into the PWS world. We know how daunting it can seem to take a chance and step into a space of vulnerability, raw and honest sharing, and a room full of likely exhausted and overwhelmed women in need of connections and support. But 100 women did just that. We at PWSA | USA are honored by the trust these women put in us to support them in their time away from family and responsibilities deferred.
We asked these women to share with us a snapshot of a before and after. What feelings they carried with them to retreat, and what they were taking away. Their responses are a testament to the healing that many women experienced, a healing we hope will carry them through their PWS journey.
“I came here feeling____________, I left her feeling_____________.”
“I came here feeling guilt that I took a spot away from another mother who may need this more than I did. I’m leaving here feeling calm, connected and more in balance.” –Tammie, mom to Victor (33), Arizona
“I arrived at the PWSA Moms’ Retreat feeling unheard, unseen, and wildly misunderstood—isolated in a crowded room, moving through life like a robot with a never-ending to-do list.
I left feeling human again.
I was reminded that I matter, my feelings matter, and I truly belong. I belong to a community of remarkably strong, talented, resilient, and fierce women who happen to be mothers to someone living with Prader-Willi Syndrome.
Gathering in a room of women who truly understand without a single word of explanation is transformative. Every day, we navigate hurtful and misguided questions, brushing off the sting and granting endless grace for what is often times purely ignorance. Every day, we fight battles we never imagined we’d be faced with. To finally come into a room where that weight is lifted, where understanding is instant and effortless is such a relief. Being here has helped me identify myself under the heavy armor I’ve worn daily for far too long.
We are so much more than the caregivers covered in armor this journey called us to be. Our identity outside of being a PWS mom matters. We matter. We belong.
There aren’t enough words to describe the gratitude I have for all of these amazing women and the dedication, hard work, and commitment that it took to organize this beautiful event!” – Jamie, mom to Lydia (4), Missouri
“I came here feeling excited to see my tribe and connect with new moms! I am leaving Utah with my cup overflowing and my heart happy!! Thank you PWSA | USA Mom’s Retreat for a wonderful time.” -Kat, mom to Ronan (12), Colorado
“I came here feeling tired & a little burnt out; I’m leaving Utah feeling rejuvenated, grateful for my tribe, a sense of belonging & connection, and immense gratitude to PWSA | USA for an amazing weekend that they put so much time, energy, and love into!” -Kenna, mom to Lucca (11), Kansas
“I came feeling alone and isolated. I left feeling connected and hopeful. It’s easy for me to get wrapped up in the day to day and forget I have a whole community of women who get me. I made some amazing new friends, reconnected with old ones and remembered I’m never really alone, all I have to do is pick up the phone.” -Jen, mom to Leah (15), Pennsylvania
“I came here feeling exhausted, I’m leaving here feeling energized.” -Crystal, mom to Trevin (18), Colorado.
“I came here feeling hopeful, I’m leaving with a deep feeling of gratitude. Thank you so very much PWSA!” -Janice, mom to Angie (36)
“I came to retreat feeling isolated, tired, depleted, filled with stress. I am leaving reminded that I’m so much more than a burned-out caregiver and single mom. I’m a woman…. with my own interests and abilities. I’m a part of an amazingly supportive community and I’m never really alone. Encouragement, friendship, kindness, and support are only one phone call away.” – Melanie, mom to Josephine (8)
“I came feeling tired. I left feeling energized.” -Lisa, mom to Makenna, (15)
“I came here feeling exhausted, between working as a school administrator, finishing my doctorate, trying to be a good medical mommy to my son, and also be a wife to an amazing man, I am tired. My work life balance has been nonexistent for a few years now.
I haven’t taken care of me and instead have helped others solve their problems and put out fires in my current career. I have also felt isolated these past few years from others due to my very busy daily schedule.
Being able to be here with other PWS mamas is so very helpful and hopeful. We get to share our stories, the good moments, as well as the ugly times. We need and deserve to be pampered and also be able to step away from all of gh needle pokes, all of the medical appointments, all of the dietary needs for a weekend. We matter!
I’m leaving here feeling more connected and inspired to make sure to look for the little glimpses of joy in my life. I also know that there is help from PWSAUSA and other PWS mamas if and when needed.” –Rachel, mom to Michael Isaac (8), Oregon
“I came feeling nervous, stressed and alone. Scared for the future. I’m leaving here feeling more connected, at peace and positive about the future knowing there will be happiness.” Kristina, mom to Kennedy (1), Washington
Perry A. Zirkel has written more than 1,500 publications on various aspects of school law, with an emphasis on legal issues in special education. He writes a regular column for NAESP’s Principal magazine and NASP’s Communiqué newsletter, and he did so previously for Phi Delta Kappan and Teaching Exceptional Children.
Jennifer Bolander has been serving as a Special Education Specialist for PWSA (USA) since October of 2015. She is a graduate of John Carroll University and lives in Ohio with her husband Brad and daughters Kate (17), and Sophia (13) who was born with PWS.
Dr. Amy McTighe is the PWS Program Manager and Inpatient Teacher at the Center for Prader-Willi Syndrome at the Children’s Institute of Pittsburgh. She graduated from Duquesne University receiving her Bachelor’s and Master’s degree in Education with a focus on elementary education, special education, and language arts.
Evan has worked with the Prader-Willi Syndrome Association (USA) since 2007 primarily as a Crisis Intervention and Family Support Counselor. Evans works with parents and schools to foster strong collaborative relationships and appropriate educational environments for students with PWS.
Staci Zimmerman works for Prader-Willi Syndrome Association of Colorado as an Individualized Education Program (IEP) consultant. Staci collaborates with the PWS multi-disciplinary clinic at the Children’s Hospital in Denver supporting families and school districts around the United States with their child’s Individual Educational Plan.
Founded in 2001, SDLC is a non-profit legal services organization dedicated to protecting and advancing the legal rights of people with disabilities throughout the South. It partners with the Southern Poverty Law Center, Protection and Advocacy (P&A) programs, Legal Services Corporations (LSC) and disability organizations on major, systemic disability rights issues involving the Individuals with Disabilities Education Act (IDEA), Americans with Disabilities Act (ADA), and the federal Medicaid Act. Recently in November 2014, Jim retired.