The Storyframes Collective
Matthew and Sarah Harms are the parents of four girls; the oldest aged six, Elizabeth, has Turner Syndrome, a chromosomal abnormality, and the youngest, Ava, passed away on her first birthday on May 24, 2012. Despite their grief and bewilderment, they trusted in God's goodness and faithfulness to comfort and provide for them.
The Harms were devastated when they learned that their first daughter had Turner Syndrome, a genetic condition in which a female does not have the usual pair of two X chromosomes; one of her sex chromosomes is missing or has other abnormalities. Girls with Turner Syndrome generally have non-working ovaries, absence of a menstrual cycle, and are sterile. Concurrent health concerns may also be present, including congenital heart disease, hypothyroidism, diabetes, vision or hearing problems, and autoimmune diseases.
Despite overwhelming grief, Matthew Harms shared in the video, "at that point we loved God and trusted God and knew that he was good but there were days that I started questioning that and there was definitely a point where we had to reassure ourselves every day that God was good… and we started to see how God was taking care of us."
"Having Elizabeth and the challenges, if nothing else, reminded me of my dependence on God and kept me dependent on Him in a way I think would have never come to," Matthew adds.
Their fourth daughter Ava was born in 2011 at 27 weeks, and after they brought her home, she started having seizures and convulsions. After many tests they discovered that Ava had Alexander's Disease, a very rare, slowly progressing and fatal neurodegenerative disease that results from a genetic mutation. Most children who have this mutation die before they reach the age of 15 months old.
"When I realized that what Ava had was terminal, it just didn't compute," Sarah said. "I wanted her. I wanted her to grow up, I wanted her to know her sisters, I wanted to know her. The difficult part was that we lost her months before she died."
Ava passed away on the night of her first birthday.
By the time of her death, Matthew hoped Ava would be like Jarius's daughter (Matt. 9) and "that Jesus would show up at the last minute and say 'daughter arise!' I even didn't want them to come and pick up her body because I was hoping that would happen."
How does someone comprehend the death of a child? How does one make sense of something that is unexplainable? "I don't understand how a baby dying can be good but I know that if it were better or if it would bring God more glory that she would be here," Sarah said.
"Our life, our marriage, our pregnancies, our daughters' lives, have all been marked by an outpouring of God's faithfulness, but God has always been there, he's always been good," said Matthew.
Despite their sadness, they found joy and hope in knowing that God loved them and would never leave them. "God has given us this life where we've been able to see no matter how big the crisis, no matter what off the wall need we have, God is going to provide for us," Sarah said.
The video is part of a Storyframes Collective, which is a collaborative effort between The Gospel Coalition and the Austin Stone Church "for the purpose of celebrating the extraordinary work of God in the lives of ordinary people."