contributed by Anne Fricke (mom to Freya, 14, living with PWS)
When I received Freya’s diagnosis of Prader-Willi syndrome via a phone call from her pediatrician on a Friday night, my husband was not home. I wouldn’t be seeing him until the next morning. After the instant flood of tears passed, I debated calling him. But I had just received this news over the phone, and that was not something I wanted to inflict on him. So, with my oldest daughter and mother-in-law by my side, I held the grief of that diagnosis.
The next morning, I felt the rush of needing to get out to the hills to where my husband was, to share the news of our new life trajectory. I remember calling to ask him if he needed anything from town, the feeling of betrayal that I was gatekeeping such critical, life-altering news. But I held it. And I drove. Two hours on a windy, forested back road with a knot in my stomach at the thought of how to prepare him and myself for this news. Eventually, we pulled up to the house. He came out to greet us and help us unload. That was as far as I could make it. There was no, “sit down I have something to tell you,” or, “let’s go for a walk.” I don’t even remember what I said to him or if I cried again.
What I remember is his presence, his strength, his unperturbedness at the news. The diagnosis didn’t shake him or give him pause. He didn’t need to take a moment to wrap his head around it or walk it off. He leaned in. To his family, to his newly diagnosed daughter, to us. He met the moment with a stoic strength that lifted a weight off my heart. Finally, I could breathe again.
When faced with the news of a PWS diagnosis, people respond differently, and all are valid. It is not easy news to get. Perhaps my husband didn’t cry or break in the moment of receiving that news, but there have certainly been other times along the way. It is not an easy task to be a man in our society, when emotional displays are seen as a weakness. But we know the strength of our dads. We see the dedication and devotion you feel for your families and how you show up in your communities. We know that your lives are affected by PWS and the love you have for your child.
While many dads seem to be happier in the shadows, working diligently for their families in the fameless (and therefore, at times, praise-less) background, some dads have stepped into more public roles. In a recent PWS United podcast interview, Clint Hurdle, PWSA | USA board member and dad to Maddie (23, living with PWS), stated, “Maddie provides us a lot of opportunities for growth. One of the biggest things we were able to buy into early was that we wanted to help Maddie have a meaningful existence in life, and what that means to Maddie is important as well. It’s not what it means to us. It’s not our dreams. It’s what Maddie’s capable of, what she holds passion to, what she finds value in and try to wrap that up in a package that makes sense to the family.”
Clint, alongside his wife Karla, hosts an incredible annual fundraiser for PWSA – The Clint Hurdle Hot Stove Dinner. When asked what legacy he hopes to leave from all his efforts, Clint said, “It’s all about the awareness for me. At the end of the day, there’s going to be a day I’m not around, and it won’t matter what I think. I just need to be present and do what I can do while I’m here and while I’m available. I’m not concerned one bit about the legacy. I’m just going to put forth the effort and do it from a place of kindness, from unconditional love for everyone involved, try and be a helper, try and be kind, and know that all of this is in my life for reasons that I wasn’t aware of earlier on, but it’s helped probably sand some rough edges off of me, where I look at people a lot differently who have disabilities and challenges.”
John Lens, fellow PWSA board member, fundraiser, and dad to Hunter (27, living with PWS) also spoke about the impact and legacy he hopes to leave from his efforts with PWSA. “99% of the time when someone asks me about my son or what type of disability my son has, they’ve never heard of PWS on any level. They don’t know the severity of the disability or how challenging it can be. So, for me, when we host our Hunter Lens Golf Tournament, I say every year that this is about the awareness of the day and that we’re using the funds raised to help others that have a very difficult life with a loved one with PWS. I want to make sure that if they need an extra hand or need to call someone for support, they have somewhere to call to get them through that day. I’ll never stop trying to do what I do here, but it really is all about the awareness.”
Just as awareness is critical for the safety and enrichment of our loved ones with PWS, we also want to bring more awareness to our dads and the critical work they do in our community and their families. We are grateful to all the dads, father-figures, single moms, uncles and friends who show up for their loved ones with PWS, who work tirelessly to ensure they are supported, protected, and moving forward in life as they need and desire. Whether your presence is stoic strength in the quiet corners of home, in the drive for awareness on a public stage, or anything in between, you are needed and you are appreciated.
Happy Father’s Day!
Click the button below to listen to PWS United Episode 97: Father’s Day Special: Two PWS Dads, Two Events, One Powerful Mission
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.