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Extract from Tim Orr, We Named Her Faith: How We Became a Gospel-centered Family, Xulon Press, 2018.

Background: Tim and Michelle Orr were married for sixteen years, before they adopted their daughter, Faith.

A Crisis of Faith

As the big day of Faith’s arrival approached, 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.

As we traveled 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 on 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 shares 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 July 17, 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 stabilized. 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 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 look at 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.

That is how our hospital journey began. We knew beforehand that Faith would be born with duodenal atresia, an ailment that babies with Down syndrome are oftentimes born with. It is an intestinal obstruction that is easily cured with surgery but fatal if left unattended. The two-month hospital stay that Faith endured was not a shock, but it tried us in many ways. The journey to healing would take the full two months to complete.

I realized I was now playing the role that my mom played when I was a child. Growing up I had around twenty surgeries, according to mom’s count, at Riley Hospital for the first several years of my life repairing my cleft lip, cleft palate, and deformed hand. During these stays, my mom lived at the hospital, sleeping on couches and eating out of the canteen as I was recovering from surgery. Sometimes the recovery period would take one or two weeks, depending how the surgery went. Nonetheless, she was there. Michelle and I were now the ones sleeping on the couches and eating the tasty microwavable sandwiches, complete with processed meat and cheese, as my mom had done years before.

Faith stayed in the NIC unit the whole time. Most of the babies were premature, weighing just a few pounds. Faith, on the other hand, weighed over eight pounds. I often joked that if the hospital put together a basketball team, Faith would play the center position.

The whole time we were there, we saw so many babies come and go. Some of the babies were there for a day or two while others had been there for weeks or even months. Whenever a baby went home, we had joy for that family, but also a sense of sadness wondering when it would be our turn.

During our stay, we also witnessed heartbreak. In the two months we were there, at least three babies died while on the unit. Each time a baby passed away, we noticed that a song was sung, and the infant was ceremoniously wrapped and taken out the front door later on. Sitting there in the NIC-U, sometimes late at night when this occurred, was very emotional. One evening, a baby passed away just a few beds down from where Faith was sleeping. I could hear the parents lamenting as they lost their little one. While I was listening to what was going on, I looked down at Faith, realizing the precious gift I had been given, thinking how hard it would be to endure losing a child. Our hearts went out to those families. Now that we had a baby of our own, tragedies like these took on a whole new meaning.

– Tim Orr