by Heather Avis
“Don’t look at me like that,” he sassed right back. “I know what’s at stake here. Pros and cons is a perfectly good way to help us make this decision.”
“Okay. Pro: they’re babies.”
Josh wrote it on the pro side of the napkin as our waiter set a whole roasted fish, eyes and all, in front of me.
“Con: they have Down syndrome.”
I cut off a piece of my fish and slathered it in hummus. Our meal continued this way. As we added to the list, the cons side grew and grew, far outnumbering the pros.
Now that we’re on the other side of our decision, I look back on this time and cringe. I almost weep tears of sorrow and terror at the thought that we might have said no to our Macy girl. I get angry, understanding that we had let our culture taint us into thinking that Down syndrome should go on the cons list when it should have been one of our pros. Friends, Down syndrome is only ever a pro.
Down syndrome (also called Trisomy 21) occurs when a person is born with a third copy of the twenty-first chromosome. That’s it. Doesn’t seem like a big deal, right? This extra chromosome is responsible for some of the characteristics that are common among people with Down syndrome, including low muscle tone, small stature, an upward slant to the eyes, and a flat nasal bridge. In addition, people with Trisomy 21 have an increased risk for certain medical conditions, including thyroid conditions, congenital heart defects, respiratory and hearing problems, and Alzheimer’s disease. These characteristics appear to varying degrees, sometimes not at all. It’s extremely important to note that every person with Down syndrome is a unique individual. Most babies and young children require early intervention in the form of occupational therapy (to strengthen fine-motor and eating skills), physical therapy (to strengthen gross-motor skills), and speech therapy.
Most of humanity reads such a list and concludes that Down syndrome is a bad thing, as I was tempted to do when considering whether to adopt our first child. It’s not “normal,” it’s not familiar; it’s uncomfortable. This conclusion is most often made by those who have limited or no connection to an actual living, breathing person with Down syndrome. This is a problem. In my experience, those who take the time to develop such relationships quickly realize that Down syndrome is nothing to be afraid of. Many individuals who have Down syndrome are attending and graduating from college, living independently, and pursuing full-time careers. People with Trisomy 21 and those of us who love them are speaking up more and more about their beauty, abilities, and personhood.
Today I’m aware of all the times I have said no to opportunities God has placed before me because I think I’m not rich enough, equipped enough, talented enough, strong enough, or crazy enough to say yes. All the times I have mistaken good things for bad. All the times I have allowed the opinions of an ignorant majority to guide my thinking instead of looking to Jesus and his heart in the matter. I wonder how many times we, his children, choose a comfortable no over a terrifying yes—the kind of yes that will lead us to the only place we should ever long to be: in the arms of Jesus.
So there Josh and I were, sitting on the beaches of Greece and trying to come up with one good reason to say no to adopting a little baby with Down syndrome.
After our meal, we went down to the water and skipped smooth stones across the calm sea. The gentle waves lapped at our feet.
“I know the cons list is long,” I said, “but is there one really good reason on that list? I mean really good?”
“Honestly, there isn’t. Every con seems to be based on fear or ignorance.”
“Right! And they’re only cons if Jesus isn’t in our picture. When I think from a worldly standpoint about adopting a child with Down syndrome, no is a perfectly reasonable answer. But when Jesus enters, that just doesn’t seem like an option. Still, a yes answer seems crazy!”
“And really,” Josh said, “when all is said and done, a baby is just a baby who needs a mom and dad. We can be that.”
That’s what it really came down to for us: in our hearts, we knew a baby with Down syndrome is a baby fearfully and wonderfully made. A baby in need of a family. A baby who wants to eat and sleep and snuggle. And while the world was telling us all the reasons we shouldn’t adopt such a baby, God was working in our hearts, whispering softly and gently, reminding us that he is greater than any one of those items on the cons list. He was showing us we needed to trust him and also trust the instinct he had placed in our hearts. He was showing us not only a baby in need of a family, but the fact that we were a family in need of a baby.
“Argh!” I shouted. “This is crazy! People are going to think we’re nuts if we step toward this.”
“So let ’em think it. It’s not far from the truth.” Josh put his arm around me and pulled me close.
Our time in Greece came to an end, and we wheeled our heavy suitcases onto the train in Athens, heading to the airport for our long flight back to our little home in California. Standing there in the crowd of people, the reality of life and the decision sitting in our laps became very, very heavy.
I looked at Josh and said, “So, what now? What are we going to do when we get home?” I knew the answer before asking the question. Our new life was already in motion.
“We make a call. We take a step.” Josh’s response sounded practical and stale.
Honestly, both of us wished it could be something else. We wished the e-mail had never been sent, the conversations never taken place. We found ourselves holding an uncomfortable responsibility. The only thing we knew for sure, for sure, for sure, was that God is good. But in this particular situation, I began to wonder if that would be enough.
The train came to a stop. We stepped off and entered the airport. Our adventures in Europe were coming to a close, but we knew a larger adventure, grander than any European escapade, was waiting for us on the other side of the globe.
We were excited. And terrified.
3
A Scary Yes
The morning after we got home, I jumped out of bed, eager to get our social worker on the phone. I took a deep breath and with clammy hands dialed the number.
“Hi, Lindsey, we just got home from our trip, and I wanted to talk to you about the babies with Down syndrome you mentioned in your e-mail.” Josh and I sat on our couch together, the phone on speaker, a healthy kind of crazy gleam in our eyes.
“There were two. One of the babies was just matched with a family. It’s too bad I didn’t know you were interested; you would have been a great match for this little girl.”
“How about the other baby?” Josh and I held our breath.
“Well, we just found out she has some serious health issues. She’s actually scheduled for a heart procedure in a few days. We don’t know what her prognosis is, so at this time we’re not looking for a placement.”
I felt like I had been sucker punched. “What exactly does that mean? Is she not adoptable?”
“Not right now. We’d like to see how she responds to this surgery. We want to know the extent of her medical needs before we put her in adoptive placement. Are you open to a child with Down syndrome?”
“Yes, I think we are.”
“Okay, good to know. I’ll change the information on your profile.” If she was anything, she was matter-of-fact. “And hang in there, these things take time. You’ll get your baby.”
“I know. Thank you for the information.”
I hung up the phone feeling greatly disappointed.
“What the heck?” Josh said.
“That was an awful lot of prayer and questioning and willingness to take a risk to end up here with no baby! I’m confused.”
Josh tried to make sense of the situation. “Maybe God just wanted us to be open to any kind of baby?”
“I guess. And I’m so excited to see who that baby is. But what if we don’t get a baby with Down syndrome?”
We sat there on the couch staring at each other, shocked by the words I had just spoken. Only days ago, we were shaking our heads at G
od for even suggesting we consider a child with Down syndrome. It was obvious to both of us that something much bigger than us was happening here. God was at work in a mystical and powerful way. But what in the world was he doing? What was he asking us to do?
Two months passed, and we stopped talking about a baby with Down syndrome, though we never forgot. We moved on in our minds and in our actions. Life went on, as it had since we began the adoption process. Josh and I had full-time jobs and oversaw ministries at church. We spent time with friends and family. I still sensed life was lacking, but I couldn’t deny life was good.
Lindsey called me on an unusually warm October afternoon. I had just come home from work, turned on the air-conditioning, and found Oprah on the television when the phone rang.
“Hi, Lindsey. It’s been a while since we’ve heard from you. How is everything?” I was shaking a little, as I did every time she called, knowing she had the potential to make me a mom.
“Remember the baby we talked about a couple of months ago, the little girl with Down syndrome? We have a better grasp on her health issues now and wanted to see if you and your husband were interested in learning more.”
I muted Oprah, started pacing around my house, and felt a giant smile spread across my face. “Yes. Definitely yes.”
“Can you come into the office sometime in the next few days? A nurse will be here to share with you everything we know about the baby’s health conditions.”
“Oh, whoa. Okay. Sure.” Somehow, since answering the phone, I had forgotten how to form a complete sentence.
“How about you talk to Josh and get back to me as soon as you can.” Lindsey had no problem taking the reins on this phone conversation. I’m sure I was not the first speechless adoptive mother Lindsey had worked with.
I immediately called Josh, and we decided the least we could do was meet with the necessary people in the agency and hear more about this baby girl.
Before the appointment, Josh and I sat in our car in the underground parking lot of our adoption agency’s office building. Neither of us wanted to make the first move, so we sat.
I broke the silence with my pragmatic pep talk. “It’s just an informational meeting. Just informational.”
“You’re right. This meeting is not a yes or a no.” My optimistic husband was leaning hard into my pragmatic thinking.
“Okay then, let’s go.”
As we made our way up to the third floor, the nerves began to set in. Lindsey met us in the lobby, and we followed her to a small room. Already seated in metal folding chairs were the head of the adoption agency, a social worker for the birth family, a separate social worker for the baby, and the agency’s nurse. We sat in the chairs set up for us.
“Josh and Heather, thank you so much for coming,” said Deborah, a striking woman with mocha brown skin and gentle eyes. Deborah ran the agency with the perfect mixture of class and grit. “As you know, this baby had heart surgery a couple of months ago and she did very well. We now have a better grasp on her medical needs.” Josh and I nodded, hanging onto her every word. Deborah continued talking. “In this meeting we’d like to present you with all the information we have about her and answer any questions you may have. Does that all sound good?”
We nodded our heads and watched her open a medical file two inches thick—for a three-month-old baby. We listened as each person present told us all they could about what they knew so far. I know for a fact that my chair was placed firmly on solid ground, but as each person spoke, I felt as though I was on an amusement park roller coaster. Each piece of information about this baby brought us either great joy or a lose-your-breath kind of fear. And when we thought we understood everything, again another bit of information they shared would jerk us to the left and then throw us to the right. There was so much to know about this tiny child.
But it was what we didn’t know that truly terrified us. Not all of our questions had definitive answers.
We left with a stack of papers containing the important bits and told them we would do our best to make a decision in the next couple of days.
From there we drove to a burger place called Fuddruckers, because in a moment like this, I needed the comfort that only dishes full of gooey cheese sauce could offer.
With burgers, fries, and cheese sauce in hand, Josh and I sat down and looked at one another.
“I just have to start by saying, why?” I picked up my fist and shook it in the air. “Why is this getting more and more complicated with each new step? Why can’t we have an easy yes? Ugh! I’m so frustrated.”
“And this!” Josh put down his burger and picked up the heavy medical file. “I just want to say yes to adopting this baby girl, but this!” He shook the file the way I’d shaken my fist.
“I know. Who raises their hand and says, ‘I want a medically fragile child. I want a child who needs heart surgery. I want a child on oxygen. A child who may not get better’?”
Josh joined in my rant. “Or how about, ‘I want a child with Down syndrome’? Who signs up for a child with Down syndrome?”
We both sat in silence. I dipped a fry in the cheese sauce and took a bite. “All of that’s true, but so is what we decided in Greece. At the center of all this is a baby. A sweet, tiny baby girl who needs a mom and dad. A baby.” My posture softened.
“I know. And Heather, I really believe we can do this.” My optimistic husband was back. “Let’s pray about it and talk to people we trust. We’ll figure it out.” He reached across the table and gave my hand a reassuring squeeze. “But first, this burger.”
It was difficult to believe that God’s best for me in this season of my life was something so downright foolish in the eyes of the world. That his best may be the very thing I wanted with all my heart to avoid. That his best is often what the world tries to convince us is our worst.
The days following our meeting with the adoption agency were heavy and gray with rain. The weight of the decision at hand was like an elephant asleep on my chest, making it difficult to breathe deeply or think about anything else. Every day, our social worker and I exchanged questions and answers through e-mail. At one point during our back and forth, she assured me that if we decided not to adopt this baby, they would find her a good home. “It isn’t your job to rescue her,” she said. She reminded us that if we did not adopt this baby, we would soon get a different child. One with forty-six chromosomes and a whole heart. And while I think she said these words to offer us some kind of relief, they had the opposite effect on me.
For me, saying yes to a sick, suffering baby who would never have a family if not for us would be much easier than saying yes while knowing we weren’t the only option for this child’s happiness and well-being. I was constantly tempted by the thought of a healthy and whole child waiting for us just around the corner—maybe next month, or even the following week. At times, it seemed as though a yes to this baby was also a no to what we thought we wanted. A no to a deep, deep desire for a healthy son or daughter. But at this point in our journey, God was trying to open our eyes to the fact that a yes to him is the only yes we should ever be saying.
After a few days of exchanges with Lindsey, and us spending every hour of free time researching the medical conditions in this baby girl’s file, she presented us with a helpful idea. She suggested we meet with the baby’s cardiologist to get a better feel for what this little girl would be facing health-wise in the short and long term. The baby had an appointment with her cardiologist scheduled for October 8, and we could meet with him after he had seen her. Josh and I agreed.
In the weeks leading up to this meeting, God had seemed silent. I had never known a time in my life when I needed his crystal-clear direction and voice more, but all I heard from him was a big fat silence.
The day before this meeting, I would have welcomed a few innocent butterflies in my stomach. Instead, I felt as though an army of African fire ants were digging tunnels throughout my body. I was so nervous. The most frustrating thing was I wa
sn’t sure what I was nervous about. I just knew I wanted—no, needed—some clarity on how to move forward with the adoption of this little girl.
That evening, Josh and I packed a picnic dinner and headed to our favorite park.
It was as warm as any night in the summer would be, but the earlier descent of the sun reminded us we were in the middle of fall. We pulled into the park and made our way across the grass to a huge jacaranda tree in the middle of the lawn. I pulled a light striped sheet out of our picnic basket and laid it out while Josh opened up two camping chairs. We sat down, unfolded the paper wrapped around our sandwiches, and pulled out a container of fruit.
“Well, what do you think?” Josh asked.
“I think this not-knowing-what-to-do thing sucks. I think I need a little clarity.” I held up the container of fruit, offering some to him. “What do you think?”
“I agree. Hopefully tomorrow, after meeting with the doctors, we will have just that.” Josh popped a grape into his mouth.
“What if that’s not the case? What if we leave the doctor’s office knowing nothing new? I don’t know how much longer I can sit on this middle ground. I’m frustrated that God’s not making things clear.”
“How about this?” Josh lifted his eyes to the heavens and said, “God, if you want us to adopt this child, then tomorrow there will be some kind of good news from the cardiologist. If the answer to adopting this child is no, then tomorrow there will be only bad news.”
I gave him a sly grin when he lowered his eyes. “You think you can make God talk?”
“If you want to see it that way. We can’t hear his voice in this situation, so why not set it up so we can?” Josh took a confident bite out of his sandwich.
“Okay. Then amen and amen.” I lovingly rolled my eyes, hopeful that God had taken our prayer into consideration.
As I look back on that conversation we had with God, I can see just how little Josh and I knew him then. Just how little I understood what is important in life. Just how easily I could have missed out on the best of the best of the best because I believed that God’s best for my life could only be found down a smooth road.