As a caregiver, I feel most empowered when I am informed enough to do more. Learning and sharing have become essential to my role as a caregiver. Finding out what works best is most effective when I can crowdsource helpful tips, reviews and advice from others who have walked this path.
At two months old, my son Richie received his trach, and he was ventilator dependent until he was 18 months old. Gradually, he was able to tolerate a speaking valve and capping, all working toward decannulation. It seemed to us that things would be easier once he no longer had a trach, but it isn’t quite that simple.
Both parenting and advocacy focus on creating the best possible future: for our children to thrive and to be accepted and understood. It can be a heavy load, and it’s easy to mix up which role we need and when.
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