When a child is ill, so are the parents.
Sick with worry.
Fatigued from balancing work, family, time, and the needs of daily life.
Sad because this is not what they dreamed for their child.
Stressed trying to find answers, experienced doctors, manage meds and find a treatment plan that helps.
Complex pain and rare conditions add a whole new level of challenges and emotions.
Let’s face it. The medical community is a lot more versed in what to do for a child that has cancer. There is oodles of support available to help both patients and families cope. There are clinics to cut down on appointment days, and coordination of care services to help streamline communication among specialists. This is quite a stark difference from the reality of a child with Ehlers Danlos Syndrome or Mitochondria disease who is failing to thrive, has a host of unexplained symptoms, seems to be allergic to the world and yet struggles to find a doctor that recognizes, and more importantly knows how to effectively treat his/her illness. Families must travel to find experienced care, and this patient journey can be expensive and certainly more isolating.
But we are not alone.
There are so many people navigating this maze of rare disease. Sharing stories, resources and hope is such a powerful way to help and inspire those in the fight. I have always been so proud of Sweet Lemon Pies founder, Molly Jones, for using her voice to try to make things better for kids and families living this life by celebrating their courage, strength, and perseverance. So I am extremely honored that she asked me to contribute and share insights from a parental perspective.
My hope is that my upcoming articles will help to facilitate conversation between kids and their parents.
After all, we are in this together.