This summer I gave a virtual lecture for University of Pittsburgh students in the School of Health and Rehabilitation Sciences PA program - section on genetics. This presentation addresses my personal experiences, pre and post natal, as well as the use of lethal language as it relates to inaccurate information and directive care. Call it… Continue reading Lecture for University of Pittsburgh students on parent experience related to prenatal diagnosis
Coming together
Is it possible in the age of divisiveness? Let’s look at our own spheres of influence… our circles and personal experiences - we have a community we find comfort in… neighbors we have come to know and trust… friends, colleagues, coaches, business owners, partners, educators… people we know and get along with… some of us… Continue reading Coming together
Osteogenesis Imperfecta: New Diagnosis Toolkit
I'm proud to have partnered with the OI Foundation in presenting this document for families and medical providers. new-diagnosis-toolkitDownload "Congratulations on your new baby and welcome to the OI family! The Osteogenesis Imperfecta Foundation is pleased to offer Newly Diagnosed:A Tool Kit for Parents to help you navigate the many questions you may haveduring this… Continue reading Osteogenesis Imperfecta: New Diagnosis Toolkit
Prenatal diagnosis + global pandemic
How is our experience eerily familiar.... The diagnosis 2020 has been both challenging and carrying an energy of something larger than we ever thought possible. When we realized our world was about to change as we knew it... there were a range of emotions... shock... denial... sadness, anger, fear.... lots and lots of fear. And… Continue reading Prenatal diagnosis + global pandemic
Transitions, grief and the wisdom of anxiety
"Most people struggle to some degree through the major milestones in life -- kindergarten, adolescence, graduating from high school and going away to college, graduating from college, starting a career, getting married, having a baby, buying a house. Those who are more sensitive, because they're acutely aware of the fleeting and ephemeral nature of life… Continue reading Transitions, grief and the wisdom of anxiety
Keynote Speaker : University of Pittsburgh Health and Rehabilitation Sciences Recognition Day Ceremony
December 14, 2019, I had the honor and privilege of presenting as the Keynote Speaker for the University of Pittsburgh's Health and Rehabilitation Sciences Fall Recognition Day Ceremony, representing both the OI community and Clarion University. The majority of graduates were from the Physicans Assistant program, and others were from Speech Pathology, OT, PT, Audiology,… Continue reading Keynote Speaker : University of Pittsburgh Health and Rehabilitation Sciences Recognition Day Ceremony
A New Conversation: Prenatal diagnosis, Genetics, Rare + the 20-week Anatomy Scan
"This was the gut-dropping, body-numbing moment…. this was the moment that we can refer to as the moment…. where there is a before this moment… and an after this moment…. this is the moment that divides… that creates the before photos… where I look at myself and think, “Oh, that’s the woman who she was before everything… Continue reading A New Conversation: Prenatal diagnosis, Genetics, Rare + the 20-week Anatomy Scan
Why it is inappropriate, unethical and negligent to diagnose a baby in utero with a lethal form of Osteogenesis Imperfecta (OI)
With the expansion of prenatal genetic testing, must come the expansion of dialogue as it relates to the ethical ramifications of prenatal diagnosis. I am not a medical professional, nor a genetic specialist. I am the parent of a child with Osteogenesis Imperfecta (OI), a rare genetic condition. I am a woman and patient… Continue reading Why it is inappropriate, unethical and negligent to diagnose a baby in utero with a lethal form of Osteogenesis Imperfecta (OI)
Running out of the darkness: How a song about Jesus reminded me of who I am
Even knowing Jesus as a child, and growing a relationship with God as an adult... when tragedy and uncertainty strike, surrender boot camp begins. Tuning into this type of surrender changed me. .... letting go, and leaning in. ... this has transformed the way I feel into all experiences, relationships, interactions, how I raise my… Continue reading Running out of the darkness: How a song about Jesus reminded me of who I am
9 Things I’d Love to Share with Occupational Therapy Students
I recently spoke on a parents panel at a local university, speaking to students in an OT program about working with an OT and having a child with special needs. I'd like to share the following, as it pertains to pediatric occupational therapy. The Early Intervention (EI) program and our team of therapists have changed our… Continue reading 9 Things I’d Love to Share with Occupational Therapy Students
Diagnosis during pregnancy 