My wife and I learned early to be careful when discussing the struggles we share in caregiving. Sometimes we get tired and want to complain, but we must remember that our children hear and see us. If we say something in total frustration, our children might blame themselves for our mood. They may feel responsible for their parents’ unhappiness.
Our nonverbal actions speak louder than words. How can we teach endurance when all the world sees is defeat? Our eyes, posture, and other signals give us away. Our kids must know that we are their greatest champions, always reminding them that their circumstances do not define them.
Now, I will be the first to acknowledge that there are times in treatment when we are anything but encouraging. We struggle to make sense of the chaos that surrounds us, and in our haste to discover solid footing, the bottom falls out and we float adrift in the storm. It seems we cannot survive in a storm that overwhelms us. Diseases and disorders are all that we know and experience. We find ourselves unable to provide for our own needs, much less another person who depends on us for everything.
Somewhere, in the middle of a blasted storm, we remember the words of encouragement that keep us vertical and add new insight to our family and the ways that we overcome obstacles. Something happens, and we realize that giving in to defeat is not an option. Our families need us to be part of a health team. Our voices carry the information about what it is like to live on the ground, 24/7.
We must continue to advocate for our loved ones and provide assurances during the worst possible moments that life will get better and that we will move forward down a pathway designed for us. Every step means we are much closer to a place where we can rest and discover who we are. We place the oxygen mask first over our faces so that we can put it over our loved ones. As caregivers, we often forget that to advocate well for our children, we must move forward by listening inward to our needs. No one knows you better than you.
Let us take this week to seek out ways to be silent and discover what we truly need. Perhaps modeling how we continue our journey helps others to find their approaches to self-care. We move past teaching to empowering others with hope. Our example can change attitudes and provide healthy ways to manage the sea of unrest we find so often as caregivers.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.