I would like to take this opportunity to introduce myself since this is my first blog post. My name is Dr. Vivien Keil, I am a Clinical Psychologist that specializes in working with children and families based in Southern California. Each and every day, I get invited into the lives of others when they are feeling stressed and vulnerable. It is during these moments that individuals and families are also open to support and guidance from an outsider such as myself. What a gift to have such a rewarding profession!
My hope is that my contributions will do just that for readers of the R.A.R.E. blog – provide support to families who may be feeling vulnerable, confused, frustrated, or angry, just to name a few of the multitude of emotions that may be swarming through your body. Perhaps my contributions will serve to inspire helpful dialogue between individuals and families in the rare disease community.
Both personally and professionally, I encourage families to be hierarchical in their structure. My definition of hierarchical is that parents and other adult caretakers (whether it be a grandparent, uncle, aunt, etc.), should be the leaders of the pack, at the top of the hierarchy, and the children follow their lead. Assuming the leadership role in a family is a tremendous responsibility – it means that you will be a caregiver, tutor, coach, guardian angel, advocate, cook, personal chauffeur…the list goes on and on! Given these responsibilities, the importance of parents and caregivers caring for themselves cannot be overemphasized.
Many people have heard of the old adage, “Healer, heal thyself.” How many of us follow this sound advice? The concept seems so simple, but yet it is so frequently ignored. Think about this within the context of medicine. How much good would your doctors be if they completely ignored their own health? Eventually the patient’s quality of care and health will suffer along with the doctor’s. This isn’t any different for a parent of a healthy child, let alone the parent of a child with a rare disease. We have to take care of ourselves and be healthy (physically, mentally and emotionally) if we expect to care for our children.
Dr. Vivien Keil
Please note that my blog entries do not constitute professional advice, nor imply a professional relationship with readers.