By Kristi Rickenbach, mother to Justice age 15 with PWS, board member, PWSA (USA)
“Optimism is the faith that leads to achievement. Nothing can be done without hope and confidence.” ~ Helen Keller
There are things that happen in our lives that we have no control over- things we wish we could change. These “things” come in many forms and can devastate a person or an entire family. We may not be able to control all aspects of our lives but what we can control is our reaction to them.
When we received our daughter’s diagnosis one month after her birth, our world turned upside down. Our perfect little family was suddenly thrown into a new world where doctor appointments and therapies ruled. This world was more unknown than known. We grieved for the baby we had dreamed of. We grieved for the future we felt she may never have. We grieved for our four other children; their lives were forever changed too. We grieved and then one day, we didn’t.
“Life is 10% what happens to you and 90% how you react to it.” ~ Charles R. Swindoll
We could have fallen into a deep dark place, but we knew that would not have changed anything. Instead, we decided to bring hope to this diagnosis. We have taken what we knowlearned and have shared that hope wherever possible. Recently, Justice and I were asked to speak to the entire genetics department at our local children’s hospital. Our message was simple- bring hope.
We felt this room full of geneticists and genetic counselors did NOT fully understand the impact their words can have on families to whom they give life-changing diagnoses. Handing those parents a list of “This is what your child will never do…” or the dreaded list of “All children with this diagnosis will suffer from…” is traumatic. There are things that newly diagnosed families need to know about every diagnosis, but not everything, certainly not all at once. Instead, new parents need to hear “Congratulations, you have a beautiful baby!”
Simply, parents need to understand their child’s syndrome will come with some challenges and that there IS hope. Studies and trials are being done and there are many doctors and researchers fighting to improve the lives for all children diagnosed with Prader-Willi.
Our family’s message? “Our” children are not textbooks. OUR children are unique individuals who happen to have a diagnosis of a rare genetic disorder.
Our daughter Justice Faith explained it so eloquently to the room full of people, “We all have something; mine just happens to have a name.” She explained that “PWS is only a small part of who I am and it does not define nor limit me.” The room was very quiet after she spoke, I don’t think they expected such a well, thought-out response from Justice. The listeners own personal textbook biases had made it difficult for them to believe that she was able to carry on a conversation and stay on topic. Following her remarks, most questions were directed to her.
This was one of many opportunities Justice has had to speak publicly of her diagnosis, bringing her message of hope to many people. Her dream of being a motivational speaker has begun. She wants to encourage and bring hope to many, especially those working for, or living, with health issues. Sharing our story and offering hope has personally brought me healing I didn’t even realize I needed. It has also given Justice a platform to share her feelings about living with PWS.
Most importantly bringing awareness offers opportunities to make a difference for future families waiting nervously in the NICU. We are so proud of our daughter, who is lighting the way by educating the public, as well as the medical professionals.
“Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.” ~ Maya Angelou
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.
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.
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.
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.
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.