by Heather Avis
7
Witness to a Miracle
In life we often think we know what we want. We do what it takes to get it: flirting with the guy or gal we hope will become our husband or wife; studying and working hard to get into the school or job of our dreams; saving up a little every month to take that big vacation. What we want becomes our goal, and we do everything within our power to make it so.
Then we reach our goals—and oftentimes we discover the guy or gal comes with serious baggage, the school is more difficult than we expected, the new job we worked so hard to attain simply sucks, and hurricane season reduces our vacation to a long hotel-room stay. No matter how hard we work to secure our desires, the unexpected is always waiting for us. The question is not how can we avoid it, but what are we going to do with it?
I once had the goal of becoming a mother. It was all I could think about. I did everything within my power to make it so. And while it came about with twists and turns I desperately tried to avoid, the day came when I met my goal. I held my daughter in my arms.
I was a mother.
But the baby I held in my arms was not the one I had dreamed of. Though her open-heart surgery was successful, her lungs were still terribly sick. When the doctors delivered this news, I looked at my daughter and envisioned a lifetime of oxygen and medication. This was not how I imagined motherhood would look.
I pulled into the Target parking lot and parked in a space closest to a cart-return stall. I grabbed a cart, got out my antibacterial wipes, and wiped down every surface Macyn and I would touch. Then I opened the back door of our SUV.
“Hey, sweet girl!” I smiled at Macyn as she looked at herself in the mirror attached to the backseat. “You ready?” She smiled back at me. I pulled the cart up close to the car and gently slipped Macyn’s feet through the holes in the cart seat, careful not to rip the cannula off her face. Then I picked up the green bag that housed her oxygen tank and placed it next to her in the cart.
“There we go.” I brushed the hair out of her eyes as she banged her hands on the handle in front of her.
“Mommy,” a nearby child said, “what’s wrong with that baby’s face?”
I looked up to see where the voice was coming from, assuming the child was talking about Macyn, happy to engage in a conversation with the child and his parent.
The mother shushed her son and continued to place bags in the trunk of her car.
I smiled at the boy as we passed by on our way to the entrance of the store.
“But, Mommy, what’s on her face?” The child was pointing right at Macyn.
“It’s not nice to point,” the mother said under her breath as she quickly lifted her child from the cart and placed him into the car.
“It’s okay,” I began to say, but the mother wouldn’t even make eye contact. I looked at Macyn, and we continued inside.
“What’s on your face?” I asked her. “The most perfect eyes, nose, and lips I’ve ever seen!” Macyn giggled and clapped her hands.
We wandered through the baby aisles, picking up diapers, formula, and an irresistible dress on the clearance rack. I noticed every single stare and would simply smile at the people brave enough to make eye contact with me. I wanted to get on the loudspeaker and say, “Attention, Target shoppers, my baby is on oxygen. You may never have seen a baby on oxygen outside of a hospital until today. No need to stare or point or feel bad for us. And please, if you have any questions, just ask me.”
As we waited in the checkout line, a mom with a toddler pulled up behind us.
“Mommy.” The toddler pointed at Macyn. “What’s in that baby’s nose?”
“I don’t know, honey.” The mom smiled at me. “Why don’t we ask her mommy?”
I smiled back, thankful to answer their questions.
Never did I imagine myself pushing a baby in a cart at Target with an oxygen tank nestled in a special bag that hung on my shoulder like a vexing purse of sorts. Nor did I think I would be the mom who would sanitize the baby swing at the park before gently placing my daughter’s legs through the holes. I never imagined I would have to push her swing super gently because we were tethered to each other by three feet of tubing.
As time went on, the blisters created by this new pair of shoes slowly began to callous, and what was once an undesired nuisance became my new and almost comfortable normal.
So often in life—and especially in parenthood—we face a massive amount of fear and anxiety about the monsters in the closet. You know what I’m talking about: What if our child doesn’t fit into a typical mold? What if we don’t fit into a typical mold? What are the test results going to say? What might be revealed at the doctor’s appointment or the meeting with the specialist? What horrible things might the future hold?
We may find ourselves tucking in our precious children at night or brushing our teeth in front of a mirror, constantly glancing at that metaphorical closet, terrified about what lurks behind the doors. We drop to our knees and pray hard, begging Jesus to spare us from the worst kind of news, the kind that scares us most.
Then, usually after some time has passed, we realize that life has gone on. We’ve made adjustments, some painful, that have landed us in a new normal. We’re making it. Our kid is making it. We’re breathing in and out. We’re placing one foot in front of the other. We don’t think about the monsters as often as we used to. Maybe we’ve forgotten them completely.
Then one night, as we’re tucking our precious child into bed or standing in front of the mirror brushing our teeth, we look over our shoulder at the closet, door slightly cracked, and we slowly walk toward it. As we grab hold of the doorknob, hearing the hinges creak, we wonder what’s different, why we now have the courage or curiosity to open it. And with one big brave breath, we quickly swing it open.
The monster we’ve been fearing this whole time is a red, fuzzy Tickle Me Elmo doll.
We begin to laugh and maybe even cry, because we realize that the monster never had any real power. Our greatest fear, although difficult and life altering, has made us stronger, braver. The monster in the closet hasn’t changed. No. We have changed.
In spite of our fears for Macyn, Josh and I managed to do life as normally as we could. I confess to occasionally fuming over the nuisance of Macyn’s oxygen. More than once, we tripped over the tubing or yanked the cannula out of Macyn’s nose when it caught on the arm of a chair. The tape that tore away from her temples would leave a small scratch in its place.
Once, we packed the car and headed to my folks’ house for the weekend, only to find upon arrival that we had forgotten to bring Macyn’s medication. Skipping a dose could be detrimental to her health, so Josh had to hop back in the car and drive the two-hour round trip to supply Macyn with her life-sustaining elixir.
Our love for travel was stifled because our daughter’s lungs could not handle the pressures of an airplane cabin, and our bank account could not afford the necessary equipment to fly with a child on oxygen. Rather than let that get us down, we found alternatives. We took weekend trips to the mountains or the beach. We embarked on eight-hour car rides up the coast to visit family and friends. We even rode a train cross-country to spend a week at my grandmother’s farmhouse in Iowa.
While my motherhood role was not unfolding like I had initially hoped it would, I was encountering bits of grace and chunks of joy I would have missed otherwise. Being able to rest fully in God’s reassurance that he’s got Macyn and he’s got me was a new experience. Motherhood is often about scooping up your child and gladly taking the bad with the good because he or she is worth it. Motherhood is about the mingling and intertwining of hearts, which makes it easier to accept the difficult realities, because you will do anything for this child of yours.
This was our new normal. Days turned into weeks, weeks into months, and months into years. What once felt like a strange and unwanted reality became a comfortable and, dare I say, enjoyable life unfolding with each new step we took.
Every six
months, we would make our way back to the children’s hospital to have Macyn’s heart and lungs checked. We would walk through the familiar lobby and enter the elevator, reminded of the holy time we spent there. While bouncing Macyn on my lap in the hospital waiting room, I would recall what a privilege it is to sit here knowing that God’s goodness does not hinge on the upcoming procedure or results thereof. I was learning to rest in God’s goodness . . . no matter what.
Macyn’s routine echocardiograms captured two and three-dimensional images of her heart and detected normal and abnormal blood flow. This procedure showed us how Macyn’s heart was functioning and also measured the pressure and blood flow to her lungs, which revealed whether her pulmonary hypertension had changed.
Directly following the forty-five-minute procedure, we would make our way first to the cardiologist, Dr. Kuhn, and then to the pulmonologist. After fitting a couple of these appointments into Macyn’s first year with us, Dr. Kuhn told us that as much as he likes our family, he would be seeing less of us. Macyn’s repaired heart was beating beautifully, and we could cut our visits back to once a year.
Thank you, Jesus! Oh that you would be glorified with every single beat.
Her lungs, on the other hand, were not getting stronger. With each visit to pulmonology, we would enter the doctor’s office with our fingers crossed and hold our breath until the doctor joined us in the tiny white room.
Our pulmonologist was Dr. Fanous. She was as sassy as she was brilliant. The first time we met, my husband asked her about her thick, beautiful accent, and she told us she was from Egypt.
My husband replied, “My college mentor has the last name Fanous, and he’s also Egyptian. I know it’s a long shot, but do you know a John Fanous? He lives in the San Francisco area and works with InterVarsity at SFSU.”
“He’s my nephew,” she replied with a sly grin. We viewed this connection as another example of God’s favor over our daughter. I had prayed for favorable relationships with the medical professionals in Macyn’s life. My hope was that God would grant us a way to be more than just another face in the doctors’ offices. In this season of cannulas and concentrators, the ties between us and the Fanouses was like a wink from God giving us that extra peace we needed.
Our first appointment with Dr. Fanous was in December 2008, shortly after Macyn’s surgery. With six months between every visit, we would always find ourselves in her office at the beginning of the Christmas season and at the start of summer. Unfortunately, the appointments became a familiar scene. We would show up at Dr. Fanous’s office with the results of Macyn’s echocardiogram; Dr. Fanous would read the results; she would say to us, “Your daughter’s pulmonary hypertension is still there. We will see her in six months.”
Our hearts would sink slightly as we gathered up our daughter and her oxygen tank.
But on December 15, 2010, things took a life-altering turn.
“What do you want me to do with these mint bars?” Josh yelled from the kitchen.
“Just cover the platter with foil.” I turned the corner into the kitchen with Macyn on my hip.
“What else can we do beforehand?” We were headed to our six-month appointment with Dr. Fanous, and afterward we would host a Christmas party for Josh’s staff. We had little time between the appointment and the party, so we were hustling around trying to get everything done.
“Honestly, not much.” I looked at the list on the counter. “All the appetizers are in the freezer, ready for a 400-degree oven. Cookies and sweets are on platters.” I glanced at the decorated table and bar area. “We just need to grab some ice for the bar on our way home. Besides that, we’re set.”
Josh looked at the clock on the wall. “We gotta go.” I handed him Macyn and grabbed the diaper bag, and we headed for the car.
I knew about Macyn’s appointment when I agreed to host this Christmas event. I didn’t think much of it. All that was needed was a little planning.
Macyn had her echocardiogram done the day before our appointment with her pulmonologist, so we headed straight to Dr. Fanous’s office. We pulled into the parking lot of the specialty clinic; unbuckled our sweet girl; adjusted her cannula, which she had pulled out of her nose; grabbed her oxygen tank; and made our way to the second floor. We checked her in, shared pleasantries with the staff behind the counter, and sat down to wait for the nurse to call our name.
We made eye contact with the other parents in the waiting area, parents living in a reality they probably never would have chosen for themselves or their child. With one smile, we could quickly figure out who had opened the closet door and discovered the Elmo doll, and who still worried about the monsters it contained. Some engaged in conversation. Others averted their eyes, maybe because they simply wanted to get through their child’s appointment without having to talk to anyone but a doctor.
We read a few books and ate a few snacks, and then a nurse came.
“Macyn?”
We gathered our things and walked her way.
“Hi, guys. How are you doing today?”
“We’re great,” I said. Macyn clapped and babbled in agreement.
We followed the nurse through the door and down the hall, Macyn on my hip and her oxygen tank securely in a bag hanging over my shoulder. The nurse proceeded to weigh and measure her, check her temperature, take her blood pressure, and wheel over the pulse-ox machine and wrap a tiny sensor on her big toe to measure her oxygen levels. We watched the number rise to 97, 98, 99, and finally 100, which is to be expected for a baby on oxygen. The reading on this tiny device held the key to Macyn’s freedom. She would need to stay above 97 on her own in order to proceed with an oxygen-free life.
After the nurse gathered the necessary information, we followed her to one of the many tiny exam rooms and waited for Dr. Fanous. Macyn reached for the paper-covered table and started giggling as she crinkled, shredded, and tried to eat the thin and apparently delicious stuff.
“It’s going to be tight,” Josh said as he looked at the clock. “What needs to happen when we get home?”
“Well, we need to stop for ice and cook all the apps. Really, not that much—”
We were in the middle of a sentence when Dr. Fanous opened the door and announced in her beautiful, thick Egyptian accent, “Her pulmonary hypertension is gone. Take off her oxygen!”
Josh and I just sat there, silent, stunned.
“I said it is gone. Take off her oxygen,” demanded our sassy and wonderful doctor.
“Wait, what?” Josh and I looked at each other and began to cheer and sob. We wrapped our arms around each other, Macyn between us, and jumped up and down in joy.
“I don’t understand,” Josh said as I gently pulled the tape off Macyn’s soft and slightly scabbed cheeks and took the obnoxious cannula out of her nose as I’d been commanded to do.
“Well,” Dr. Fanous started to explain, “her levels in her last echo came back normal. What we need to do now is take her off oxygen, and in thirty minutes we will measure her pulse-ox levels to see how she does. If she can stay above 97, we will send you home oxygen-free.”
“Really?” I asked in a tearful whisper.
“Really!” Dr. Fanous smiled at me. “Her pulmonary hypertension is gone.”
I picked up my oxygen-free girl, held her cheek against mine, and spun her around and around, something I could never have done when she was attached to her tank. We laughed. I had dreamed of this moment for more than two years but never really knew if it would come.
Having a baby with an incurable and possibly life-shortening disease is never on a mother’s list of desires for her child. But in that moment when I spun around the doctor’s office with my oxygen-free daughter, I couldn’t believe my luck. It had been a difficult road, yes. But with each twist, turn, and pothole, I gained a patient strength. I learned that God’s goodness and faithfulness do not hinge on my daughter’s health, yet this same goodness was extended to us when God gave us Macyn, and then gave us this moment.
With each past disappointing echocardiogram, with each stumble over the stupid oxygen tubing, with each night spent praying the line wouldn’t find its way around my daughter’s neck and choke her, all I could do was lean more and more into the strength of my Jesus. As I held my daughter that day in the doctor’s office, tossing her up in the air and spinning her around, waiting for the thirty minutes to pass, I felt so lucky that I got to be the one to witness this kind of miracle. I felt myself lean into Jesus again, but this time not for strength. I leaned in because I didn’t know any other way to show him the gratitude I felt.
Thirty minutes ticked by, and the nurse showed up again with the pulse-ox machine and strapped the sensor around Macyn’s big toe. We held our breath as the numbers flashed and began to rise slowly until they consistently teetered between 97 and 98.
“She’s good to go, guys,” Dr. Fanous announced.
I was still stunned by this unexpected miracle. “So we just go?”
“Yes. Continue with the medication and keep her on oxygen at night for now. Her body doesn’t know life without them, so we will need to wean her off.”
Josh and I nodded while Macyn played with the tiny light on the pulse-ox machine.
“Come back in three months, and we can reevaluate and adjust as needed. Okay?” She looked at us, and we continued to nod. “Now go, get out of here. I only see sick babies; your baby is not sick.” She gave us her sly grin.
“Dr. Fanous, can I hug you?” My arms were around her neck before she could answer. “Thank you so much. Thank you!” I whispered as she hugged me back.
A small crowd of nurses and staff gathered around our little circle of joyous commotion in the hall. “It’s gone! Our daughter is healed!” I announced to anyone who would listen and passed out hugs to everyone within reach.
As soon as we walked outside, I was on my phone. “Mom, guess what!” I cried all over again as I proceeded to tell her every detail of the holy moment we had just experienced.