No hospital is error-free. The most important partner in your child’s health and safety is you. You can help keep your child safer by sharing information and asking questions.
Therapy is a necessary part of our lives as parents of children with special needs, and sometimes it can feel like a chore. When therapy goes badly, it can be disruptive, at best. We have experienced therapists who seemed unsure of themselves and didn’t understand the importance of partnership. We had a therapist tell us … Continue reading A Shared Vision: Partnering with Therapists
Five years ago, I didn’t give much thought to the way my local hospital managed the quality of care they provided. Then our son was born with multiple medical issues. Witnessing the complex medical care he received made me reflect more on the importance of diversity and inclusion among those making decisions about our health … Continue reading Participation and trust in health care
The following was published as part of my “Teachable Moments” blog series for ProMedica HealthConnect. We humans are naturally social creatures. We gather, embrace and share. Unfortunately, we often share our germs. Germs are everywhere, and as a result, the parents of medically fragile children often limit their children’s interactions and essentially self-quarantine.
Congenital fiber-type disproportion myopathy is rare. In fact, it is so rare that there are no estimates on just how rare it is. A neuromuscular condition, it affects the muscle fibers and causes weakness that can affect eating, breathing, mobility and posture. Besides my sister and my son, I have never met another person with … Continue reading A Life with Few Answers
The following was published as part of my “Teachable Moments” blog series for ProMedica HealthConnect. As the parent of a medically complex child, taking care of myself has included the need to power up in regular intervals. Richie’s first year of life was marked with hospitalizations, tests, and the slow achievement of milestones. For me, … Continue reading Why Can’t Parenting Come With An Ever-Lasting Battery?