contributed by Jodi Joskowitz, “Mimmy” to Bennett (2, living with PWS)
For many years, I answered to a specific name and lived a specific life. I worked as a saleswoman on Wall Street, where I was known simply as “JJ.” But in September of 2023, I was branded with a new name. I became Mimmy.
The blueprint we had imagined for my daughter Dylan’s pregnancy shattered during her third trimester. Diagnosed with polyhydramnios—an excess of amniotic fluid—she suddenly became a regular at the high-risk OBGYN office. Because all her initial genetic testing had come back normal, the doctors focused on a potential physical defect. After an agonizing amount of deliberation, it was decided she would deliver in the Special Delivery Unit at the Children’s Hospital of Philadelphia (CHOP).
The scheduled induction moved slowly. When contractions began to affect the baby’s heart rate, everything shifted into high gear, and an emergency C-section was performed. After the briefest peek, my grandson, Bennett Sonny, was whisked away into an adjoining room where a massive medical team stood by ready to X-ray, draw labs, and operate if necessary.
Structurally, Bennett was completely fine. In fact, he was incredibly cute, sporting a full head of spiky blond hair. But he wasn’t crying. And he wasn’t feeding. It was only after additional, deeper genetic testing of Bennett and his parents that we were handed the diagnosis: Prader-Willi Syndrome.
Those three weeks at CHOP were a blur of overwhelming grief. It is truly the greatest place in the world that you never, ever want to visit. I knew I had to be the rock for Dylan and her husband, Marc, but inside, I was crushed. The fear I carried for my daughter became entirely crippling. I lost ten pounds; I couldn’t sleep. I lived in pure survival mode because I had to be strong for my girl. Bennett was receiving world-class medical care, but my heart broke for my daughter. Many of her friends were having babies, but absolutely no one in her circle had experienced anything like this. How was she going to handle it? I had always pictured her following closely in my footsteps, but suddenly, we were navigating unchartered waters.
When Bennett finally left CHOP at three weeks old, he came home with an NG feeding tube, oxygen tanks, and a pulse ox monitor taped to his tiny toe. It was so far from the homecoming I had pictured for my grandson, and miles away from the life I had expected for my daughter.
In those early days, babysitting for our grandchild looked entirely different for us than it did for our friends. While they were burping babies, my husband and I were filling feeding bags and managing medical monitors. Every single beep kept us from sleeping but we leaned into caring for our grandson.
I am sharing my story because when we first received this diagnosis, it felt like I was standing entirely alone on an island. The fear and sadness were consuming. But over the last two and a half years, that isolation has been replaced by something much larger. I am completely devoted to the unexpected, beautiful journey of loving my grandson. Bennett’s milestones may come later than his peers but the joy of watching them is worthy of fireworks. He works so hard yet never stops smiling. The simplest way to describe being Bennett’s grandmother today is that he makes my heart beat. When he walks into my house waving and saying, “Hi Mim,” I am complete.
I won’t sugarcoat it: it is still scary. His future cannot be predicted by a medical chart, and the corporate world I came from never prepared me for an uncertainty this vast. I will not have all of the same experiences as my friends, but I refuse to let myself get lost in the differences. I choose to live in each moment, wholly enjoying the profound love and joy Bennett has to share. The corporate titles of my past feel distant now, replaced by a far more rewarding role… Bennett’s Mimmy.
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.