It is not easy to care for children affected by Lyme disease. I know this personally. There are lessons available in every experience, and what I learned from my son's illness had a significant—and eventually positive—impact on my life.
I learned to reevaluate my priorities, to live differently, eat differently, challenge assumptions about health and parenting, become more compassionate, and redefine success in a culture that does not always support people who are facing difficulties.
This site offers a framework for caring for and healing a child with Lyme disease. It offers 8 Steps, including Self-Care and Building a Support Network, along with useful tools and resources. These steps are based on personal experience, and address lifestyle and environmental components of care that are necessary to create a supportive environment for healing, while also managing multiple areas of daily family life.
I want families affected by Lyme disease to thrive — not just survive.
Standard medical interventions do not address the psychological, social and financial impacts of pediatric tick-borne illness— important aspects of care that are often neglected in medical appointments or treatment protocols. The good news: many of the things that can help a child heal do not require a prescription or health insurance – they require love, patience, education, compassion, and hope.
Caring for and healing a child with Lyme disease, disability, or illness requires choices that confront cultural norms. For me, it required learning new skills, and reconsidering my ideals about health, parenting, family and success. It was often a difficult journey, so I choose to make it useful by sharing what I learned along the way, hopefully making the path a little easier for others.
Read essays about our experience with Lyme and Tick Born DiseaseRead more
My six-year-old son was ill for several years before severe vision loss, frequent infections, and joint pain led to a clinical diagnosis for neuroborreliosis (neurological Lyme disease) and co-infections. Before this diagnosis, his symptoms were mostly behavioral – leading to discussions about ADHD, autism spectrum disorder, childhood manic-depression, sensory integration problems, ODD, other possible diagnosis (and – inevitably - our parenting skills). Because he was academically bright, we did not qualify for services through our public school. Because his symptoms were variable, we could not ‘pin down’ a physical or mental health problem that could be effectively treated. I was being told everything from “there is no problem” to “your son obviously needs to be medicated for ADHD” to “clearly if you disciplined him more…” yet in my gut I knew something was not right. I saw his rages and tantrums as an internal battle, not an attempt at manipulation. His hyperactivity and inability to sleep were beyond his control. (He would even say to me, “Mom, my body is doing it!”) His depression seemed too profound for his age and experience. His kind, thoughtful and creative spirit was lost in a body that was in continual distress. And while people would respond to his behaviors, offering ‘consequences’ or judgment, few would actually inquire about what was causing these behaviors. Hardly anyone acknowledged the pain, suffering and confusion being experienced inside that small body. Few offered help.
When we needed compassion, guidance, and patience, it was often difficult to find. The effects of these circumstances on our family included depression, anxiety, loneliness and addiction (not to mention the financial stresses of paying high medical bills, while living on one income so I could be home to take care of our son).
With the right diagnosis – Lyme disease and co-infections - something amazing happened: he got better. This was the beginning (though we didn’t know it at the time) of years of relapse, medication adjustments and new treatments, but throughout this time he has continually improved. And our lives got better too. This was partly because of the skills we learned to take care of him, the changes we made to our lifestyle that allowed for more simplicity and flexibility, and the fact that we were no longer always living in crisis.
I have decided to use my personal experience with pediatric Lyme disease to guide others affected by a child’s illness or disability. I want physicians, neighbors, teachers and community to understand how deeply these circumstances affect families. I want to show how lifestyles, and priorities can be adjusted to help people heal and thrive during difficult times. Most of all, I want our communities and institutions to learn how to be more accepting, compassionate, and helpful to these struggling families and children.
“Problems that remain insoluble should be suspected as questions asked in the wrong way” —Watts