
A Crisis of Faith
As the big day of our daughter Faith’s arrival approached, my wife Michelle and I were cleared to talk with the doctor and find out Faith’s medical status.
When we arrived, we assumed that the doctors would go over all of the possible scenarios regarding the health concerns associated with Down syndrome. While they did do that, the doctors also informed us that there was a good chance that Faith might have Dandy Walker syndrome.
The doctors shared that if this diagnosis were correct, Faith could have a brain malformation where there is a missing part of the brain between the two hemispheres. If true, it meant Faith would likely not walk, talk, or even be able to feed herself. It also meant she may have a shortened life span.
Michelle and I were devastated. The thought that there was a possibility that we could lose our child before we even met her weighed heavily on us.
Prayer and Consolation
As we travelled home, Michelle sobbed uncontrollably. We had had no idea that this was a possibility. When we finally arrived back at the house, I sat down in front of my computer, feverishly researching everything I could find about this syndrome. Michelle, on the other hand, went into the baby’s room, prostrated herself with face to the floor, and began to cry out to God. A little while later, she called one of her friends to come over and console her and pray with her.
While Michelle was waiting for her friend to arrive, I decided to call my mom and tell her the news. When she answered the phone, I told her the diagnosis. Her answer hit home. She told me that when I was younger, during one of my stays at Riley Hospital, she remembered a woman who gave birth to a severely deformed young girl. My mom recalls that the girl’s mother said, “I can’t raise someone like that,” so she left and never came back.
As soon as my mom told me the story, I knew that I couldn’t be that type of parent. God had made it clear to me that Faith was our daughter, and no disease was going to change that fact. Even if it meant raising a daughter with this degree of disability, we would do it.
Once Michelle’s friend arrived, they immediately went back to Faith’s crib and started to pray. Up to this point, Michelle hadn’t been able to form words for prayer. Instead, her time was spent in tears and groaning before the Lord. She remembers that her friend prayed that Faith was created in the image of God and that He had her in the palm of His hand. Nothing could touch her without His say-so.
Finally, Michelle was able to utter words in prayer and shared that she felt almost a literal burden lift from her shoulders. She knew in that moment that either Faith would be completely fine, or God would provide a means of handling any problems that Faith might have. We are so thankful that we made the commitment to our daughter and refused to back out.
Faith is Born
On 17 July 2009, just a few days after the fateful doctor’s visit, we received the call that Faith was born. The birth father told my wife that the hospital would transfer Faith after they got her and the birth mother stabilised. We were overjoyed.
Despite our excitement, we still weren’t sure what lay ahead regarding Faith’s health. We knew, however, that God was in control. On the way to the hospital, which was about 90 minutes away, Michelle and I discussed the many possible health scenarios. However, despite the possibilities, she was our daughter now and we could hardly contain our excitement on that trip to meet her.
Finally, she arrived at the hospital by ambulance after traveling from her birth family’s city to Indianapolis. Elated that she had arrived into the world, we still were very concerned about her medical condition. Did she have the Dandy Walker syndrome? Would she ever walk or talk? Would we have to bathe her and feed her for the rest of her life because she would not be able to do it for herself? These questions raced through our minds along with the excitement of meeting her.
Once Faith arrived, they brought her to the Neonatal Intensive Care (NIC) Unit, where the newborns, mostly preemies, were. The room included several baby beds, sectioned off by small walls that divided up small areas for families to visit their babies.
Then we saw her. It seemed like the world just melted away, and if you look at our very first family picture you will see that we instantly fell in love with our precious daughter. One thing we both noticed was that Faith’s arms and legs were quite active, a good sign, we thought.
A few doctors came by to check on her within the first couple of hours we were there. But the doctor we were waiting to see was the neurologist. When he came by to check on Faith, we immediately wanted his opinion. There was a long line of machines waiting to reveal Faith’s insides.
He looked at the technician working the machine at the front of the line and instructed her to show him Faith’s brain. He said to her, “We need to diagnose Faith immediately so we can put her parents’ minds to rest.” The technician said he would need an order to do that. He immediately walked around the corner, wrote one, and handed it over.
He then performed the test in front of us and said, with a twinkle in his eye, “Your daughter is fine. I see a fully developed cerebellum and no water on the brain.” Overcome with a sense of relief, I looked at Michelle as she received the news and noticed the tears of joy flowing down her face. We both had an incredible sense of God’s faithfulness and could now fully enjoy the arrival of our beautiful baby girl.
When I think back on that day, I see how profoundly it influenced how our lives turned out. We entered the hospital with anxiety and doubt, but we left feeling excited about what life would look like ahead. As promised, God had been faithful to us and provided us with the fortitude to confront any challenge.
When we first saw Faith, we were reminded that each kid is a gift, and we would always be devoted to her. We never could have predicted Michelle’s death six years later, yet God also saw us through that grief.
Faith turned sixteen last month. She is becoming a godly young lady, and I get a clearer picture of the godly woman she will become. Her life serves as evidence of God’s faithfulness and goodness.
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An inspiring story, Dr Orr. The courage displayed by yourself and your wife on that day is an example. You did not shirk from the challenge.
Indeed you were not ‘that kind of parent’.
Thanks, Gregory. We didn’t feel courageous that day—just two scared parents clinging to God’s grace. We’d already settled in our hearts that Faith was ours, whatever the diagnosis. I’m grateful our story encouraged you.