After an “eventful” first few months of 2020, it feels great to return to this blog. Thank you for indulging me as I share about something other than music education that remains close to my heart (pardon the pun).
This year, we have 1 extra day to “celebrate” Heart Month. I remain in awe at the progress that has been made since 1986. Back then, families of Hypoplastic Left Heart Syndrome babies faced such grim realities. I know this because Brendan shared a step-down room with a newborn HLHS girl. We watched her family struggle to find normalcy while grasping at the few days she had left on this earth. Fast forward 34 years and we’re hearing about an ever-increasing number of HLHS babies growing into adulthood and living wonderful lives. These little ones are just the tip of the iceberg when it comes to CHD survival.
My husband and I know we represent every family’s worst nightmare. You might even be one of those people who feel uncomfortable just hearing Brendan’s name or seeing his photo because “there but for the grace of God” go you and yours. Trust me. We get it. We used to be right there with you. We still deeply grieve Brendan’s loss but we don’t back away from saying his name and sharing the 9 ½ months of memories that we hold. Bren will always be our middle son, and a beloved brother, grandson, and nephew. He will always be the uncle we wish Emilia and Ella had the chance to know and love. Like every other CHD family, our purpose for observing Heart Month is to raise awareness of CHDs while honoring the memories of those who were lost to them.
If you know of a family facing a CHD future, please don’t hesitate to message me. I’m more than happy to share any info/resources, and to always be a listening ear.
with much love and peace…
Jeff, Bren, and Daniel’s Mom
#1in100 #NeverEnoughPhotos #Tenderheart
NotesByNan 