Life in the Shadow of Death

When Macyn came home at three months old, you can bet I had a stack of books with expert advice on babies, as well as on babies with Down syndrome. I perused the web to help fill in the gaps the books failed to address. In addition, I had my own ideas on what would be best for our baby. I pieced together the highest quality information I could find to form my own “manual,” if you will.

Prior to becoming a mom, I had tons of experience with children of all ages. I began babysitting at a young age and was a nanny throughout college. I was a pro diaper changer and could calm even the fussiest of babies. I felt confident in my ability to be a top-notch mom even without the stack of books by my bed, but I appreciated the expert advice.

Enter Macyn. She did not come with a book.

Placement day was a dream. Josh and I arrived home with Macyn in the early evening, the warm sun still shining in the October sky. We pulled into our driveway, and I smiled at the banner hanging from our garage: “Welcome Home, Macyn,” painted in bright colors. I scooped our daughter out of her car seat while Josh used both hands to carry in the large, heavy oxygen concentrator.

We opened the front door to our home and were surprised by the evidence of our dearest friends, who had been sneaking in and out while we were away. Our dining room table was stacked with gifts wrapped in every shade of pink and purple, and the banister leading upstairs had a dozen or more sparkly balloons tied to it.

“Whoa! Look, baby girl!” I turned Macyn to see all the love that had been poured out for her. Josh carried the concentrator to her room and headed back to the car to get the cooler full of medications that needed constant refrigeration and the portable oxygen tanks.

“Who are all the gifts from?” Josh called over his shoulder as he transferred the meds from the cooler to the fridge.

“Our sweet friends.” I picked up the large note atop the pile of gifts. “They said, ‘Because your sweet Macyn shouldn’t be around a lot of people, we present to you a people-less baby shower!’”

A knock sounded at the door.

“Where’s our new granddaughter?” my mom and dad said in unison as they let themselves in. They gently charged toward us.

“Wait!” I turned so they couldn’t touch the baby in my arms. “You have to wash your hands.” Macyn’s sick heart lowered her immunity, putting her at greater risk for illness. If she was to get a cold, it could instantly go to her lungs and cause pneumonia and lead to death — her doctor’s words, not mine. So hand washing became a religious activity in our home.

After another knock at the door, my younger sister, Hana, came in with a bouquet of colorful balloons. “Hey, Heathy, where is my little niece?”

“Wait!” My mom yelled at her before she could even take a step. “You have to wash your hands.”

We spent the next couple of hours opening gifts and passing around our perfect little daughter until it was her bedtime.

Josh headed toward the kitchen. “I’ll get her medications and bottle ready.”

I took Macyn from her grandpa’s arms. “Say good night to your grandpa.”

My dad brushed her hair from her forehead and gave her a kiss. “Good night, Macyn Hope. I’m so happy you’re here.” Then he gave me a goofy grin, his eyes brimming with tears.

I walked my daughter over to say good night to my mom and sister, who were sitting on our sectional couch, but they both stood.

“We’re coming up with you,” Hana announced, and they followed us up the stairs, Macyn’s little head peeking over my shoulder.

I walked into Macyn’s room, her walls painted in bold colors and bordered with the silhouette of little birds on a wire. I laid her down on her back on the padded changing table. She was already beginning to fall asleep. I gently removed her green onesie.

“Hana, will you grab the flowered sleeper from the top drawer?” She opened the dresser drawer and handed me the sleeper. I got Macyn into her jammies and began hooking her up to her oxygen. The oxygen she required was pumped into her tiny lungs through a tiny cannula in her tiny nose. This cannula was attached to some plastic tubing, which attached to a concentrator, which was plugged into the wall and hummed loudly when it was on. It was literally a lifeline. I carefully handed Macyn to my mom, who sat on the vintage olive-green chair in the corner of the room. My mom sang sweet lullabies from my childhood, and Macyn nodded off.

Josh came up, followed by my dad, with Macyn’s medication and bottle. “She’s already asleep?”

“It was a super long day for her,” I said as we all gathered around our new girl and just stared.

“May I?” Josh looked to my mom and held out his arms for his daughter.

“Of course.” My mom gently handed Macyn to Josh, careful not to wake her or get tangled up in the tubing. Josh sat in the green chair, switching places with my mom.

Mom put her arm around my waist. “We’re going to go and let you three have this moment.”

My dad came and kissed me on the head. “I’m so happy for you, Elizabeth.” Then he gave Josh a pat on the shoulder. “Congratulations, Daddy.”

“She’s perfect, you guys.” Hana gave me a big squeeze. “Simply perfect.”

“Thank you for coming and for the food and the gifts and… everything. Thank you for everything.” I began to cry as we shared hugs, and then my family left.

I sat on the floor near the chair where Josh was slowly squeezing the bitter medication from the syringe into the back of Macyn’s mouth. Our sleeping angel puckered up her face and began to cry.

“It’s okay, sweetie; just a little more and you can have your bottle.” Josh squeezed the last drop and quickly replaced the syringe with a warm bottle. “There you go, sweet girl,” he whispered, and the sound of his voice and the warmth of the milk calmed her down.

When she finished her bottle, Josh placed her over my shoulder, and I bounced and gently patted her back. It couldn’t have been more than five steps from the chair to her crib, but as I walked, I became tangled up in the tubing attached to her face.

“Whoa. Careful.” Josh steadied me as I fumbled.

“That’s going to take some getting used to.” I made it safely to the crib and held my sleeping baby out so I could see her face. Behind me, Josh leaned over my shoulder. “She’s finally here! I can’t believe it. Thank you, Jesus!” Josh brushed the hair from Macyn’s forehead and gave her a kiss. “Good night, my daughter.”

I laid her on her back. “I love you, Macyn Hope.”

Josh took the empty bottle downstairs to the kitchen, and I fell to my knees beside my daughter’s crib. “Thank You, Jesus, for this baby. Thank You that I get to be her mom. Please, please, please, dear Jesus, protect her from the cord in her crib. Give her a strong heart and healthy and whole lungs. In Jesus’ name. Amen.”

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Our nightly routines with Macyn continued in the way they had begun. Each night, I did my best to keep her safe. I kept her crib free of loose blankets, pillows, or stuffed animals that could cause her to suffocate while she slept and was still too small to control all of her movements. Though her crib was devoid of “dangerous” organic cotton blankets and killer Winnie-the-Pooh plush toys, she had to go to bed every night with that dang plastic tube attached to her beautiful face. How was that not a hazard?

For the first few months, I felt pretty confident that her inability to move would protect her from being strangled by the threatening yet lifesaving tubing. But it wasn’t long before she began to roll over and move around more. I found myself a little sick and slightly terrified whenever I placed my sleeping angel in her crib. I skimmed my books and the Internet for “how to keep kids alive when they have to sleep with plastic tubing in their beds.” As expected, my searches always turned up empty.

I had to give up so much control on my journey to becoming Macyn’s mom. I had been forced, in all the best ways, to trust God with so much of my life. But this sleeping-with-oxygen thing took the surrender cake.

Every parent I know does everything in their power to keep their kids safe and alive. It’s basically a parent’s number-one job. Josh and I had to get creative to make sure the tubing never snaked its way around Macyn’s neck. We used special tape to ensure the cannula would not slip from her nose. The tape would sometimes leave little sores on the tip of her nose or the side of her face, but we had to count the cost of keeping our daughter alive. We cut little holes in the feet of her pajamas and would feed the tubing down her back and through the hole to keep it as far from her neck as possible.

Every night before going to bed, I would check on Macyn dozens of times. I would check to make sure the tubing was where it should be. I would adjust her cannula, which so often slipped from her tiny nostrils. I would brush her crazy brown hair from her forehead, I would lean in and kiss her sweet button nose, and I would kneel at the side of her crib, my forehead to the floor, and plead with God. “Lord, heal my baby. Give her a strong beating heart; give her lungs that can function on their own; and keep the tubing in her crib from wrapping around her neck. In Jesus’ name. Amen!”

Sometimes an acquaintance, someone who knew our situation but didn’t really know, would comment about how stressful it must be to have my daughter sleep with tubing in her crib. “I wouldn’t get any sleep if I were you. I’d be too worried the tubing would wrap around her neck.” Then they would scoop up their perfectly healthy baby, and I would want to punch them in the face.

I never did.

Though these moms and friends made such comments in love, their ignorance sometimes led me to question my ability to keep my own child safe. Did the fact that I could sleep mean I was a bad mom? Over time, I became thankful for these kinds of conversations because they would always take me back to Jesus. In everything the Lord had been teaching me so far, I knew that trusting Him was at the tippy-top of the list. I did everything within my control to make sure my daughter was as safe as she could be while she slept, but the real protection had to come from God.

And friends, this is the case for all parents.

We have to hold on tightly to the truth that God loves our kiddos more than we ever will. We have to remember He is in control of their lives.

These were the facts that helped me fall asleep at night, tubing and all.

Macyn’s medication was a special liquid compound that could only be produced at special pharmacies, and it needed to be refrigerated at all times. Its bitterness could be neither sweetened nor flavored. This medication had to be given to Macyn four times a day: at six in the morning, noon, six in the evening, and finally at midnight. It was a most annoying way to keep track of the hours on the clock. Like the oxygen tubing, this medication became a necessary thorn in our side.

As the days, weeks, and months went on, I found my relationship with the oxygen and medication complicated at best. On the one hand, I hated them. I hated that they required me to alter my way of living. I hated what they represented: a sickness so great that we were at their mercy. And on the other hand, I loved them. I loved the comforting hum of her oxygen concentrator. I loved that the medication she needed was available to us. At midnight when my alarm would go off, I’d go to the refrigerator with heavy eyes, measure her medication, wake up my sleeping baby, and help her swallow the bitter liquid. While tired and annoyed, I would whisper a prayer of thanks.

I find it interesting and a tad bit obnoxious that life’s necessary bitter things can offer so much needed goodness. I don’t know about you, but I find myself waking up most mornings hoping for an easy day. A day free of the kind of tubing that may cause me to trip, a day free of any bitterness trying to find its way to my mouth. At the time, God was teaching me that sometimes those are the very things needed to keep us going, to keep us breathing, to keep us alive.

Excerpted with permission from The Lucky Few by Heather Avis, copyright Heather Avis.

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Your Turn

What bitter things do you face in life? In what ways do you see the goodness of God offered to you just the same? We’d love to hear from you in the comments!