#17 2021 Heart Warrior Half Marathon, part 2 of 2

We managed to get Juliana and Noah off to bed early on New Years Day.  I was excited to see an email inbox full of Heart Warrior Half Marathon participant finisher photos and comments but too overwhelmed to check them.  A rare occasion, we instead decided to watch a movie and I almost made it through the whole thing before falling asleep, which would have been even more rare.  I had seen Something the Lord Made before.  A true, inspirational story that details the work of researchers at Johns Hopkins on congenital heart disease (CHD).  During this era (mid 1900's), the heart was an organ that was notorious for causing complications if disturbed.  The latin phrase, noli me tangere was commonly used among cardiothoracic surgeons-- meaning, do not touch the heart during surgery.  The surgeons that broke conventional thinking, developed techniques that gave children a chance at life.  Today, the same surgical principles and shunts have been improved and exist in thousands of cardiac patients, including Noah's heart and his heart warrior friends.  

Pins from patients all over the world
It's fascinating how the world is connected.  During our time at the University of Michigan Children's Hospital, we were under the care of a cardiothoracic team that has taken care of children all over the map.  One family we met there has a son, Theisen, that is currently recovering from the Norwood procedure (same procedure our Noah had in June).  Building on discoveries learned at Johns Hopkins in the mid 1900s, Dr. William Norwood at Children's Hospital of Philadelphia (CHOP) pioneered the treatment of Hypoplastic Left Heart Syndrome (HLHS) and became the first to perform a major reconstructive surgery in an HLHS patient---the Norwood procedure (1980s).  Prior to this, infants with HLHS would not live more than a few days. Dr. Norwood passed away recently (December 13th), but because of him and other professionals in the cardiothroacic realm, babies like Noah and Theisen live on!  Theisen's father ran the Heart Warrior Half Marathon with a very impressive finishing time of 1 hour and 24 minutes for 13.1 miles!  

On New Year's Day, we had many amazing stories of motivation from people completing a half marathon for the first time, battling freezing rain, doing a relay on the treadmill with family, and simply kickstarting the year off right with some healthy steps.  Some have even made it a weekly routine, coming back for a run/walk as a commitment on their calendar.  Each of us have been connected by a Heart Warrior--they are in your family, circle of friends, or within your community.

Team Laney in New Jersey

Laney Stoeckel
Team Laney, a group of 24 people across 3 states (NJ, PA, CT) participated in the celebration of life of Laney Stoeckel.  Here is Laney's story as told by her mother: 

"At our 20 week ultrasound, my husband and I found out that our daughter (and 6th child) would be born with HLHS.  We were told that it would be a long road with a lot of ups and downs and that couldn't have been more true.  Laney Grace Stoeckel was born in the Special Delivery Unit at CHOP on May 12th 2020.  In the short 4 1/2 months of her life she had undergone 2 surgeries, 3 cardiac caths and a "creative procedure" (one that was done only 1 other time at CHOP).  On Saturday October 10th, 2020 we got a call that no parent should ever receive.  Despite everyone's best efforts, Laney had passed on.  We are so thankful for all the nurses, doctors and staff and for everything that they did for our family.  They are truly superheroes.  Unfortunately, with COVID, Laney's, 4 brothers and her 1 sister never got to meet her in person.  We would like to show our children that Laney's life, although short on earth, has changed lives."

As it's commonly said, they are called Heart Warriors because they will show you true courage and strength, and in turn, they will help you find your own.  In life, and especially for many individuals with a CHD, it's uncertain where or when the fight will end.  We named our son Noah, as he would have to be brave when faced with challenging waters and we, as parents felt pulled to be more obedient to God's calling.  "Faith over fear" has been a mantra we have adopted.

For families affected by CHD and those facing other unique circumstances and struggles -- we are all connected. However, our human resilience helps us forge on!  While it can be tempting to derail one's faith when faced with adversity, our faith gives us a renewed spirit, peace and purpose as we raise our Noah up knowing he is a child of God.  We are constantly reminding ourselves that God is good, ALL THE TIME. Not just when things are easy, but especially when they are hard. As time passes, we get to witness the beauty of future generations and know that God has a purpose for all of us. 

Christian, Aron + baby K
 Lastly, I wanted to highlight a couple we have connected with who participated in the Heart Warrior Half Marathon from Arizona. Although their baby is not born yet, their medical team suspects that their baby may too, be born with HLHS. Despite all of the uncertainty, and all too familiar emotions of fear, they have inspired us with their positivity and spirit of gratitude as they prepare to welcome their son.  We are excited to see what plans the Lord has made for their family, and how God continues to bless each and everyone of you! 


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