Sunday, May 23, 2010

My Heroes

Meet Gus, Suzy and the Hermes family. They are my heroes.

Jenny and I have known Gus and Suzy for a number of years now. We served together with them while on staff with the ministry Athletes in Action. Gus and Suzy were at the University of California at Irvine while we were at U.C. Berkeley. Jenny and I have always enjoyed our friendship with Gus and Suzy but it was after we each had our third child that our relationship became especially meaningful.

You probably know Jenny and my story. When our third child, Garrett, was born he had Down syndrome. It was a complete shock and surprise to us. It was also a huge life adjustment as neither of us were prepared to have a child with a developmental disability. Around that same time Gus and Suzy had their child as well. She was a beautiful baby girl called Noelle. Gus and Suzy knew there was something wrong with Noelle when she was born because much of her skin was either missing or falling off. Noelle has a rare genetic skin disorder called Epidermolysis Bullosa, or EB for short. With EB a crucial protein is missing in the skin so that the the two layers of skin (the dermis and epidermis) do not "stick" together. In fact, Noelle probably would have not survived birth if it were not for Susie having a C-section. Gus and Suzy were in complete shock and surprise with Noelle's birth and were at a lost at what life would be like raising her.

Taking care of Noelle requires constant care and attention. A simple fall or scrap of the knee can cause devastating effects because large portions of Noelle's skin can fall off. Gus and Suzy have to carefully "dress" Noelle's wounds constantly--many times a week. Gus and Suzy also have to live with the reality that most people with EB do not live past their 30's. Gus and Suzy have demonstrated tremendous love, courage and perseverance in raising Noelle.

One would think that life could not get more challenging than this, but it did. The unexpected happened...again.

Earlier this year, Gus and Suzy noticed that their older daughter, Brenna, who is 14 years old, started to complain of sore legs. Brenna's discomfort grew so great that Gus and Suzy decided to order a number of medical tests to see what was the problem. The news they received was shocking. They discovered that Brenna had a rare diesese where her body produces too much collagen. The effects of this overproduction of collagen is that Brenna's organs can harden. Unfortunately it's an uncurable diesase that will probably cost Brenna her life.

The Hermes now have two children with disorders that will probably take their lives early. The courage, faith and love that Gus and Suzy have demonstrated throughout their journey have been nothing short of heroic. They have continued to trust and praise God throughout the pain, hardship, and disbelief. They have shown me what it means to trust God, even when we don't understand him.

Having worked in sports ministry for 14 years, I have worked with a many athletes who were "heroes" to the people who watched them. I can tell you that none of those athletes even compare to the courage, strength and resilience that I have seen in Gus and Suzy. They are my heroes.

3 comments:

  1. great big blessings to suzy and gus!

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  2. Gus and Suzy are my heroes as well. So are their precious girls ~ all 3 of them. Gus and Suzy know in the depths of their hearts what it means that "God is with us"....

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  3. Thanks so much for your Hero insights. God places special people in our lives for a reason! He superintends circumstances for His Glory.

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