Three Little Birds

Story of 3 little birds and one who soared above us all.

Lydia’s Legacy

Lydia’s LegacY

from our dear friends’ the Schreckenghausts

more updates about Camden can be found at:

“You’ve likely read recently on Facebook or on this blog about Camden’s friend Lydia who passed away on March 1. (You can read her entire story at It was obvious by the outpouring of love for the Johnston family over the last week that Lydia has impacted many people and her short time on earth has left a lasting impact. We wanted to share how Lydia’s bravery and the love of her parents have deeply impacted our family.

Rebekah and Amanda were introduced by a mutual friend and quickly connected. People seem to form lasting bonds around their children and that happens even more quickly and the bonds are even deeper for people who share the privilege of parenting kids with special medical needs. Rebekah and Amanda traded stories and began a dialogue that ultimately led us to Boston.

Lydia’s journey got off to a rocky start with a difficult surgery that had unwanted results just days into her life. That’s where Amanda and Clay took over. Lydia was soon on her way to Boston for a stay that changed our lives.

Lydia went to Boston to undergo the Foker procedure to correct her long-gap esophageal atresia, a challenge that she and Camden shared. But due to many unforseeable set backs and Lydia’s additional challenges related to her heart, she returned home without an intact esophagus. But it was Amanda and Clay’s insistence that the Foker procedure “works” that led us to Boston.

I vividly recall a conversation with Amanda at the snack shop at Children’s Mercy that was a turning point for us. Amanda shared these feelings: “Camden will be better off with his native esophagus and the Foker procedure DOES work.” In the midst of all of Lydia’s difficulties and set backs in Boston, it was Amanda’s passion that led us to dig deeper and, ulitmately, make the decision to take Camden to Boston for the Foker procedure.

Just days before we departed for Boston, Amanda, Clay, Rebekah and I all sat down for the first time over a meal at a small Mexican restaurant. Knowing people that we could talk to face-to-face that were walking the same path made the transition to Boston easier. Over the next few months we spent time together in Boston, with Rebekah and I dropping in to say “Hi” to Lydia whenever possible and Amanda and Clay dropping by to visit Camden and even taking Jackson to the playground just to give us a break. Amanda and Rebekah went to get their hair cut, get pedicures, ate meals together, went to movies and, of course, indulged in ice cream.

Camden’s life isn’t “normal” by any stretch of the imagination, but we are in a much better place today simply because of the life that Lydia lived. Lydia paved the way for Camden and (hopefully) hundreds of others kids who will find great treatment for a difficult issue. Lydia’s legacy will live on in the life of Camden and the rest of our family.

We are also excited to see Lydia’s Loveys become a staple at Children’s Hospital Boston for kids born with challenges. Loveys will be donated to the NICU at CHB to be given to kiddos there, and Lydia’s Legacy will continue to make a difference in the lives of families.

It’s hard to imagine a life of only 2 years that can make such a profound impact, but for our family that’s certainly the case.”


Please keep Camden and his family in your prayers as well that they all may be back in KC together soon with Camden having a healthy esophagus.


1 Comment

  1. How wonderful that Lydia’s surgeries were not in vain. That story gives wonderful meaning to it all.The Lord does use the trials of his children for good..

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