Congenital fiber-type disproportion myopathy: what a mouthful! Our three-year-old son Richie received this diagnosis, and it changed our world.
His medical needs have been substantial since the beginning. His weak muscles and difficulty breathing made him seem so fragile. He was intubated hours after his birth and had tracheostomy and G-tube surgery shortly thereafter. The vision I had of motherhood changed quickly, and my husband and I had to adapt to a new reality that included private-duty nursing, therapies, Early Intervention and multiple specialists.
What is an Informed Caregiver?
Administering medications, monitoring Richie’s respiratory status, managing his tube feedings, repositioning him and using his orthopedic devices, and working toward his goals in speech, occupational and physical therapy are among the many things we must do in the course of a day. The most rewarding aspects of being a caregiver, however, are the results of going beyond the requirements and finding new ways to make Richie’s life better.
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.
In addition to talking to other parents online and in person, I visit reputable websites to learn more about Richie’s condition and research treatments that may help him. Together with my husband, I consult with various specialists as challenges arise and make sure to remain informed about all aspects of his care and about ways to contribute to his health. Most importantly, we pay close attention to Richie and respond to his changing needs.
Going Beyond the Diagnosis
While Richie’s diagnosis is a big part of our world, it is a small fraction of who he is. Our job as parents is to see, and help others to see, the big picture. Our vision for his future is that he becomes an independent, thoughtful and compassionate contributor to the world. We ensure that everyone who participates in his care is on board with this vision. By remaining well informed, we are able to provide better care, eliminate stress in our lives and prepare for the future.
Caregiving is much more than a series of tasks to check off a to-do list; it is a mission of excellence centered on caring and giving, going beyond what is required to achieve the best possible outcomes. We, as parent caregivers, are always looking forward and always striving for the best possible future, and this mission changes our lives for the better.
Complex Child e-magazine featured this article in its March 2015 issue on caregiving.
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