Imagine being 16 weeks pregnant at your ultrasound appointment and seeing a panicked technician rushing out of the exam room in the middle of the scan. I found myself sitting on the exam table wondering what was happening. The doctor comes in and takes the ultrasound wand and starts looking at the baby on the monitor. At that moment I told myself before the doctor could, something is wrong with the baby. I really did not need the details, I know something was wrong. I could not stop the details from flowing. They flowed from doctors, surgeons, specialists, and nurses from that point forward. The doctor said, "your baby has HLHS, Hypoplastic Left Heart Syndrome". At this point, my brain and body went into "research mode". Researching hospitals that could help us, cardiac surgeons, transplant options and so much more.



This is where Sisters by Heart comes in. A resource that can take an unimaginable situation with enormous stress and delivers tools and resources to families specifically for families dealing with HLHS diagnosis and other singular ventricle defects.


Now I was not able to use their services in 2010 when we were going through our journey with Baby Miles... but years after I discovered them and have been able to connect many mothers and families to Sisters by Heart. With having and losing a child to HLHS, I am connected to many people suffering and in need of help and one of my go-to resources is Sisters by Heart to this very day.



Our son, Miles was born 10-4-2010 and left us on 2-16-2011. He lived for 4 months and did more in his little 4 months than many of us in a lifetime. I am so grateful that Sisters by Heart was born and created for families that truly need so much assistance, navigation, and education on what comes next. Without an organization like them, families are lost in a massive land of "figure it out on your own" and it can be debilitating. So THANK YOU Emotional Support Threads for choosing an organization that is truly doing magnificent humanity work.

47 views0 comments

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.



44 views0 comments

I’ve been involved with Best Buddies and the Gold Coast Down Syndrome Organization for years and I’ve really never met happier people in my life. And their families are just full of love and encouragement.  So, when I was asked to host the Exceptional Theater Company’s annual Gala it was a no-brainier. I had no idea it was like hosting the Oscars. There was so much joy expressed in song and dance and it was such a pleasure to witness first hand the healing power of music and creativity and the freedom that came with it.  I’m so excited to be asked back to host the gala once again November 14th. And I love EVERYTHING this organization is about. After all, music saved MY life….


I hope you'll consider supporting what I believe to be a very worthy cause and purchase the shirt I helped design along with Emotional Support Threads with 100% of the proceeds benefitting Exceptional Theater Company through the end of November 2020.


Love,

Julie


45 views0 comments
1
2
 
 
 

All rights reserved. © Emotional Support Threads 2020-2021