Hi! I'm Erin: mom to 11-year-old Jonas.
Jonas was born with a congenital heart condition called Hypoplastic Left Heart Syndrome, also known as a single ventricle defect. In easier to understand terms, he does not have a functioning left ventricle.
Throughout his life, he has had 3 open heart surgeries and multiple lengthy hospital stays. In his infancy, we were told children with his condition often do not live to see age 5. We were given a very grim prognosis. He was very ill the first year of his life, undergoing two open heart surgeries by the time he reached four months old.
He visits his cardiologist twice per year. He struggles with anxiety and PTSD, especially in a medical setting. Sometimes his energy will tank in the afternoon and he'll fall asleep for a couple hours.
In some ways he is limited: riding a roller coaster that goes upside down is not advised due to his physiology. Tackle football and physically demanding careers are also not good choices for him.
Despite these challenges, Jonas is a bright and talented young man. He is an avid skateboarder who will drop in from any ramp at the skate park. He is a multi-instrumentalist, especially passionate about playing drums. He is a member of a Boy Scout troop, and he is determined to reach the highly coveted and respected Eagle rank.
Being the mother of a child with a complex medical condition is an emotional roller coaster ride. Although my organization of choice did not form until after Jonas was born, I have received so much support and friendship from Sisters By Heart. I have become a more knowledgeable and empowered advocate for my son as a direct result of my relationship with and education from Sisters By Heart. They are such a valuable resource for heart families through every step of their journey!
Collaborating with Emotional Support Threads was a no-brainer: prioritizing self care and your mental health is the most important thing you can do as the parent of a heart child.