Defining Moments

As we enter into this month, coming up on 15 years since the events of September 11th, we will all reflect on a defining moment for the entire world.  

They say a defining moment is “a point at which the essential nature or character of a person, group, etc. is revealed or identified.”  

Many times defining moments are experienced with great loss.  With the paralyzing grief and unrelenting emotion that is rooted in this depth of loss, sometimes comes an intense, unwavering drive and motivation to do more, be more, and give back.  

This is a fascinating trait about the human spirit.

For our family, a defining moment was losing our 7-year-old nephew Ethan to congenital heart disease in 2012.  In the years since Ethan’s passing, I’ve watched my sister-in-law and brother-in-law, Jessica and Erik Lindberg, grieve the loss of their oldest son while also choosing to live a life with Ethan’s 3 younger brothers filled with love, purpose, and growth.

Without question, this was a defining moment for the Lindberg family.

Ethan M. Lindberg Foundation is Established

1`In June 2015, Jessica and Erik established and launched the Ethan M. Lindberg Foundation (EMLF), whose mission is to advocate for unique and collaborative approaches to medical and patient care that make a difference for children and families facing congenital heart disease (CHD).  

Since its inception, EMLF has raised over $500,000, and has three areas of focus: 

1. Providing practical family support through personalized family grants and long-term housing solutions for families with lengthy hospital stays.  
2. Supporting innovation that empowers families, improving family/physician communication, and focusing on quality of life goals for children with CHD.
3. Funding Music Therapy Programs that focus on children with CHD.

Ethan was a huge fan of music, and he also experienced the healing power of music throughout his lifetime. Through EMLF donations, Boston Children’s Hospital has increased Music Therapy by 10 hours per week for children in the inpatient heart program.   

Ethan and Jack Johnson

Jack Johnson visits Ethan Lindberg, 6, via skype at Boston Children’s Hospital

The very popular singer Jack Johnson was one of Ethan’s very favorites. Ethan loved his music! In 2011, Jack and Ethan met over Facetime.

After EMLF was formed, Jack Johnson went outside of his charitable giving mission, made an exception, and donated to the Foundation.  

Jack’s music had a huge impact on Ethan, and it seems that meeting Ethan also impacted Jack Johnson – perhaps a defining moment for him?

Ari’s Tournament

On September 10th, my family and I, plus a few close friends, are heading to Massachusetts to participate in a fundraising event for EMLF: Ari’s Tournament- Golf Outing and Dinner. Ari is a 4-year-old boy with congenital heart disease who has spent over 220 days of his early life in-patient at Boston Children’s Hospital.  He is currently on the heart transplant list. All proceeds of this event will benefit the Ethan M. Lindberg Foundation.

We’re excited to learn more about Ari’s journey, raise awareness for congenital heart disease, and support the great work of EMLF.  I’m raising money to support this great event. If you want to help other children with CHD by supporting the EMLF,  a link to my personal fundraising page is below.

Want to help us help more families?

I’m very proud of Jessica and Erik, and humbled by what they’ve chosen to do with their defining moment.  Not just Ethan’s passing, but certainly also his life, was the point at which their essential nature and character was revealed and identified.

We support their efforts as they balance living with profound loss and giving to families that come after Ethan.  These are the amazing gifts that come from defining moments.  Ethan’s spirit continues to inspire us and we look forward to a very special day this September.

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