8

LEARNING CURVES

WHEN YOUR FAMILY SELLS duck calls for a living, as ours did when Mia was an infant, sales meetings are extremely important—especially meetings with big clients. Jase’s annual meeting with the buyer from Wal-Mart was scheduled for the day after Mia’s surgery. He would present the new duck calls and hunting DVD, and ideally the Wal-Mart buyer would place a huge order for the upcoming year. The meeting had been scheduled weeks in advance, and we knew we could not miss it. I had prepared the samples and the sales presentation before we left for Dallas, so everything was ready.

Our plan before Mia’s surgery had been for Jase to drive to the meeting after Mia was out of recovery and settled in her hospital room. The plan seemed perfectly reasonable to us when we came up with it. But then we saw Mia after her operation.

“I cannot leave,” Jase said.

Even though my heart could not stand the idea of his leaving, I knew in my head that Jase had no choice.

“You have to go,” I said firmly.

“I cannot leave,” he repeated.

We talked about the situation and thought through our options. We knew Phil was busy with other commitments, and Willie and Korie did not work for Duck Commander at the time. There was absolutely no one else who could make the presentation. Jase had to go. Our entire livelihood, plus Miss Kay’s and Phil’s, basically depended on that one meeting. Miss Kay, always selfless and generous, immediately insisted that she go with Jase. Knowing my parents were at the hospital with me, and wanting desperately for someone to be at Jase’s side to comfort and reassure him, I persuaded Jase to take his mom up on her offer. With a heavy heart, he left the hospital with Miss Kay and headed to Arkansas.

Bad Night, Good Recovery

My mom stayed with Mia and me in the hospital room that night. It was one of the most miserable nights I have ever lived through. Not only did I miss Jase, but we found out that Mia does not tolerate anesthesia well. She vomited most of the night and into the following day. Our expected one-night hospital stay became a two-night stay.

After being in the hospital for two days, the doctors released Mia to go home. The hospital sent us home with three things that proved helpful in her continued recovery. First, they gave us a wound-cleaning solution, which I applied with a cotton swab two or three times a day to the area where they had operated. I was diligent to keep that area clean, knowing cleanliness would facilitate the healing process.

In addition, the hospital gave us immobilizers called No-Nos, which were intended to prevent Mia from bending her arms and touching her mouth. These soft wraps are stiff on the underside, fasten easily with Velcro, and come in all sorts of cute colors and designs. Mia needed to wear these twenty-four hours a day for three weeks.

The hospital also gave us a special bottle—a soft bottle with tubing coming out of it—that the nurse taught me how to use. The tubing rests on the bottom lip, and the formula is slowly squeezed through the tube into the baby’s mouth. Nothing about the bottle was difficult; it was just different and required some practice using it. Mia adjusted quickly, and so did I, which meant feeding her after surgery was never a big problem.

A week later, we returned to Dallas so Mia could have her stitches removed, again under anesthesia. Once the stitches came out, we began a whole new process, which involved a special kind of flesh-colored tape that needed to be applied to Mia’s upper lip after her surgery to repair the cleft. This tape stretched the skin above the lip to prevent excessive scar tissue from forming. The medical staff told me to cut about a two-inch piece of tape, place it in the center above Mia’s upper lip, and then press firmly on it from the middle to the edges. The goal was to flatten the area where scarring could occur as much as possible.

I’ll admit that I wasn’t keen about doing this; I can’t imagine any mother wanting to tape her baby’s lip. But I also had seen firsthand the appearance of other children’s lips when the tape was used and when it was not. Without the tape, a child’s upper lip tends to heal with more scar tissue than necessary, causing it to look thick and heavy. In contrast, when the tape is used, the lip typically heals and appears quite normal. I made up my mind that we would use the tape.

I understand the concern of having to keep tape on your baby’s lip twenty-four hours a day, seven days a week—it draws attention to your baby and prompts questions from onlookers, but I urge parents to do it. It’s a difficult but necessary part of the journey toward the ultimate goal of repairing the cosmetic effects of a cleft. I know that being diligent about the tape is not easy. I did it, though, and Mia has never had any scar tissue in the area where her cleft lip was repaired.

After making it through Mia’s first surgery, we were so happy to get home from the hospital in time for Christmas. For years, my family had gathered at my aunt Bonny’s house in Austin, Texas, around New Year’s. Our family knew we could not travel so soon after Mia’s surgery, so everyone converged at our house for a joyous holiday celebration.

Mia was recovering well—smiling, eating, gaining weight, and playing. Her eyes were bright, and her cheeks were rosy. Almost all day every day she had family members loving on her. We did not have to put the No-No’s on her, except at night, because she had not yet found her mouth! She was thriving, and I was thrilled. That Christmas was such a special, happy time for us. I knew that once the holidays were over, we would have to turn our focus to Mia’s next surgery, four months away. But for the time being, I felt abundantly blessed to see her doing well after her first operation and to be surrounded by so many people who loved her and loved us.

Surgery at Seven Months

Mia recovered fully from her first surgery without complications, and once the recovery was behind her, we began preparing for the next procedure to correct her palate. Thankfully, our days of dealing with the palatal appliance would soon be over.

By the time Mia was ready for her next surgery, she had become as adept at flipping her palatal appliance out of her mouth as a teenager who flips a retainer. In fact, one Sunday we got home from church and discovered it wasn’t in Mia’s mouth, only to have Alan and Lisa’s daughter Anna call to say that she found Mia’s palatal appliance in the church parking lot! That was an expensive piece of equipment, so we were glad the person who found it knew what it was and whom it belonged to.

As unhappy as I was about the palatal appliance when we first got it, it had proven to be helpful, as the orthodontist promised. But I was ready for Mia’s palate to be closed, knowing the operation would be a huge step toward improving her quality of life. The day before her scheduled surgery was like a replay of the day before her first procedure. We packed the car and headed for Dallas.

By the time children are six or seven months old, they can be a little bit clingy, not wanting to let go of their mothers. The anesthesiologist gave Mia some “goofy juice,” a calming sedative in a flavored drink, to relax her before taking her into the surgical suite, and it definitely worked. She was completely relaxed by the time they took her back. The medical team did pump her stomach before administering anesthesia, and they gave her antinausea medicine—lessons learned from her previous experience when she got so sick.

I, on the other hand, fell into Jase’s arms in a replay of what had happened when the doctor took her back for her first surgery. All I could think was, I can’t believe we’re doing this again so soon. I had really tried to psych myself up for that moment, telling myself repeatedly, “I got this. I’ve done this before. I’m going to be okay.” Nevertheless, letting your baby go into an operating room and be put under anesthetic and have an operation is no small thing. It is an emotional event, and while I find that some surgeries are more emotional than others, I have learned to give in to the emotions.

With this particular surgery, part of the trauma for me was knowing how the procedure would be accomplished. The palate is made of cartilage—not bone. The front part of it is hard, and the back part is soft. Some surgeons choose to repair each part separately, but thankfully, the surgeons at ICI had learned to do it all at the same time, thus preventing further and unnecessary stress to the baby. To repair the hole in Mia’s palate, where the roof of her mouth should have been, the surgeon would cut along the upper gum line on each side, pull the palate together and sew it closed in the middle. Instead of a large hole in the center of the top of her mouth, Mia would now have holes on each side, along the gum line. Because of the amazing way God made the human body, the body recognizes the suffering and begins to heal itself.

Thankfully, Mia was able to avoid what some children go through—the insertion of a nasal stent. I was aware of babies who had needed the stent because their nasal passages had collapsed. When there is no roof of the mouth, there is nothing for the nose to rest on. I could only imagine how uncomfortable a nasal stent would be and was relieved that Mia did not need it. All in all, the procedure went smoothly. The hospital had told us to plan for a two-night inpatient stay, but Mia recovered so well that we were able to leave after one night.

The day after her operation, the hospital sent us home with Tylenol and codeine. Over the next several days and weeks, I had to learn to read my daughter in new ways—her facial expressions, her gestures, the sounds of her cries. She could not tell me what she needed or how she felt so I had to figure it out, which enabled me to understand who she is in much deeper ways.

Three or four days after surgery, I could tell Mia was really improving and feeling better. She looked good, but more than that, I could see her becoming a happy baby. She had not been unhappy before, but her level of joy and alertness seemed to rise day by day and that was extremely encouraging to me. Within a week of her surgery, I dressed her up and took her outside for a few photographs. That entire season of our lives was good—beautiful spring weather, everyone in our family doing well, and a baby on the road to greater health. Within several weeks after surgery, Mia had graduated from the tube-feeding bottle to a regular bottle and then to baby food! She was able to eat like most other babies her age, and she was happy, happy, happy—as long as she was with me.

I was not accustomed to having a mama’s girl or actually any kind of mama’s baby. Both of my boys had been quick to let other people hold them or to play on their own without needing me with them. Not Mia. She was a mama’s girl to the umpteenth degree. Anytime I tried to let someone else take her for a few minutes, she screamed like crazy until I took her back into my arms. If I was in her sight, it didn’t matter who was around, including Jase—she wanted me. This was not easy because I had a full-time job at the time. Eventually I put a crib and some toys in my office at Duck Commander, but being so needed all the time wore me down. I suppose in Mia’s mind she considered me an extension of herself because I was with her around the clock and tended to all of her physical and medical needs. I would say to other moms in a similar position that it’s okay to admit how exhausting that kind of situation can be.

Her Needs Change

When Mia was close to a year old and fully recovered from her palatal surgery, I knew her dependency on me had to be dealt with. It was not good for her or for me. I needed some normalcy in my life, and she needed some too. The only problem was that I had a frame of reference for normalcy, and Mia did not. Her entire short life had been traumatic. Her demeanor was different than her brothers’ had been. She was fussier and more easily agitated, and she did not sleep as soundly as the boys.

Mia also suffered from an unusual sensitivity to loud noises. When I asked the doctor about that, he said, “Remember, she was born with a crater in her head. It may be that sounds are magnified or that they reverberate in a way that bothers her.” With our family’s lifestyle, that became a challenge—not a big one, but still a frustration. When we went to Reed’s and Cole’s baseball games and the crowd started cheering, Mia would scream and then cry for about half an hour while I held my hands over her ears. Funny, her own loud screaming did not affect her; she was only bothered by the exuberant sounds of other people. Not surprisingly, the noise from fireworks bothered her, but oddly, and thankfully, she was perfectly happy when the sound of a duck call interrupted the quiet of an otherwise peaceful moment for her. I guess that’s her Robertson genes!

Once Mia recovered from her palatal surgery, she did not need such dedicated care anymore. There were no stitches to clean, and there was no appliance to work with. Her next surgery was years away, and we could actually begin treating her as a typical growing baby. I understood that, but at less than a year old, Mia could not understand that. She and I both knew that I had been consumed with her for months, and she kept wanting to live with the same level of attention she had always been shown due to her needs. But those special needs no longer existed. She had the needs any baby her age would have—no more and no less—so I began to see her as a normal baby who needed to act in normal ways.

The problem with acting normal was that she had no idea what that meant. So I enrolled her in a local church’s “Mother’s Day Out” program two days a week. She spent five hours there on each of those days, giving us both a bit of much-needed independence. This was a good break for me, and it was important in Mia’s social development. After a few consistent days, she was absolutely fine with everyone there.

At that time in the Robertson family, Mia had several cousins her age. Willie and Korie’s daughter Bella is a year older than Mia. Jep and Jessica’s daughter Lily is nine months older, and their daughter Merritt is ten months younger. Those three cousins were built-in friends for Mia. Once she was able to play and interact like any other child, she got to know them and they got to know her. Those four little girls spent a lot of time together and formed a close bond that they still share.

A Speech Evaluation at Fifteen Months

As part of Mia’s treatment plan, one of her checkups at ICI included an evaluation with Dr. Sperry, the speech therapist, when she was fifteen months old. I was shocked and disappointed when Dr. Sperry told me that Mia’s speech was comparable to that of a child six to nine months old.

Before that day, my only experience with a speech therapy evaluation was when Melissa lived with us. Reed was two years and five months old at the time, and I was pregnant with Cole. For one of her speech therapy assignments, Melissa was supposed to conduct and record a thirty-minute conversation with a child who was two and a half to four years old and analyze it afterward. Reed was close enough to the required age, so one day she took him on a walk near our house and recorded their conversation. When she analyzed his speech, all she could say was, “I didn’t do this right. This result is not possible.”

Melissa took the results of her analysis to her professor, who echoed her opinion. “No, you did not do this correctly,” she said. “Let me try it.”

The professor’s analysis showed the same results as Melissa’s. At two years and five months of age, Reed’s speech was on par with a child of four years and four months, almost twice his age! We all considered him very articulate, but we had no idea his speech was so advanced. I knew I was headed for trouble!

When Cole was around two years old, his speech was also advanced for his age; he was speaking in clear and complete sentences, while most of his little friends were still mostly pointing and gesturing. With two boys who excelled verbally, I was understandably upset to learn that Mia’s speech was delayed. The therapist reassured me, saying, “It’s okay. She needs some therapy, and she should be fine.”

We learned about a program through Easter Seals in which a therapist visits children in their homes. Mia’s therapist worked with her once a week, and she progressed very quickly. Within a few months, her speech was completely up-to-date and she was learning to form all her words and letters correctly.

Just a Regular Family—and Thankful for It!

The long reprieve before Mia’s next surgery when she was five years old was a welcome relief. I felt that we became a “normal” family, like the other young families we knew. Jase and I enjoyed all the fun and responsibilities of having three children. The boys did well at school; we were active in church, as always; and we went to ballgames and school performances and community activities. Mia was developing well, and I loved dressing her up and taking her places.

The only reminders of Mia’s condition and the surgeries that would await her in the future were her regularly scheduled check-ups at ICI, which required a trip to Dallas once every few months, two sweet little white scars above her upper lip—and her medical bills. Even though ICI was out-of-network for our insurance company, they offered to write off a portion of Mia’s expenses. This was something completely unexpected, and we were overwhelmingly grateful. Still, after two surgeries, our out-of-pocket bill was more than $12,000. That amount was shocking—and enormous—to us. We had no idea how we would pay such a bill, but we were committed to meeting our obligation.

When we first received the medical bills, I knew we could never pay the debt before Mia’s next surgery when she would be about five years old. But we didn’t waste any time and quickly set up a payment plan, diligently paying $100 per month. When Jase and I received Christmas bonuses or bonuses connected to one of our clients, or earned extra money working trade shows selling Duck Commander products, we put that money toward the medical bills. We were disciplined and dedicated to paying off that bill, and while it took years to pay it, we met our goal of paying off the first two surgeries right before her third one.

Starting School

Starting school is a big deal for any child, and Mia was no exception. The boys each attended St. Paul’s Day School when they were four years old. Reed and I spent an entire day together visiting all of the church preschools in our area, and we both fell in love with St. Paul’s. It was a very organized and scheduled environment, and the teachers there were almost dripping with sweetness. Within sixty seconds of walking in the door, I had made up my mind that this was where I wanted my children to start school. They went for a few hours three days a week, and it turned out to be the perfect place for Reed and Cole to begin their formal education.

When Mia was old enough, I was determined for her to have the same great environment that Reed and Cole experienced. Her first day at St. Paul’s was a very big milestone for me. I have always taken a picture of each of my kids in their prospective classrooms or in the hallway on the first day of school every year (well, until they got into middle school and became absolutely horrified). This day was no exception. Mia looked absolutely adorable in a cute little skirt and shirt, and her smile that day told me that she was as excited for this day as I was.

Mia then joined her brothers at OCS the following year. She absolutely loved school, and had definitely overcome her clinginess to me by that time. She had become a little social butterfly. Mia thoroughly enjoyed being with her friends, and she felt like a big girl, going to school like her brothers and older cousins. A highlight of her first year at OCS was when Mamaw Kay brought all the necessary ingredients for her famous homemade biscuits, and Mia and her class helped her make an entire batch. They all ended up covered in flour, especially Miss Kay!

Mia’s biggest struggle when she started school involved how she formed the letters f and v when speaking. After Mia’s initial work as a baby with her speech therapist, I paid close attention to the way she formed her words, determined to help her so her speech would not be a problem. As she grew older I started to notice that instead of making the f and v sounds by putting her top teeth to her lower lip, she made them by moving her lower teeth to her upper lip. The sounds seemed perfect, but I knew she was forming them improperly, so I worked to teach her to make them correctly.

When we saw Dr. Sperry later that year, she told me to stop correcting Mia because she was physically unable to make the sound as other people do. Because of the way her jaw was growing, she had an underbite, and making the sounds this way was normal for her. She had learned to compensate for her physical condition, something I did not realize right away.

I explained Mia’s difficulty to her teacher and asked her not to correct her. The teacher gladly agreed. Mia still forms these sounds the same way she did when she started pre-K. Every year I ask her teachers not to correct her, and I appreciate that they are understanding and allow her to speak naturally.

A New Doctor, Another Surgery

During Mia’s pre-K year at OCS, she was scheduled for her “touch-up,” taking advantage of the tissue that had grown around her lip area since her previous procedure and smoothing out the area cosmetically.

By that time, Dr. Salyer had retired, so we chose Dr. David Genecov, the son of Mia’s orthodontist and a highly regarded surgeon for cleft lip and palate at ICI. Right away, we thought he was phenomenal in terms of both his surgical expertise and his bedside manner.

Mia did not remember her two previous surgeries at all. She did not know exactly what to expect, but she was aware of what was happening, and we talked about it openly. After we arrived at the hospital, they gave her goofy juice, which made her really goofy. She was funny, talking about animals coming to life and saying to Jase, “Daddy, you should meet them!”

Thanks to the goofy juice, Mia did not have a care in the world. When the time came for her to be taken back to the operating room, she simply said, “Bye, Mom!”

I was thankful for the chance to laugh with her, but I was also mindful of the heaviness of another surgery. Letting the medical staff take her back for the third surgery was as difficult emotionally for us as it had been for her first and second operations, but Jase and I hid it well from Mia until she was out of sight. Then, once again, we caved emotionally, especially knowing this would change her outer appearance once again. This time, however, we felt better prepared.

The surgery turned out to be more extensive than planned. We did not realize the possibility that Mia’s nasal passages could still collapse after the palate had been repaired. But, to our surprise, they had. What we dodged during her second surgery came back to haunt us during her third. When it was over, Dr. Genecov had indeed touched up her lip area, but he also had inserted a hard stent into her nose. She ended up with more railroad track stitches, plus the stent sewn into her nasal passage.

This third surgery was more difficult on me than I expected it to be, mostly because I was not prepared for how she would handle the recovery.

I Should Have Prepared Her

Soon after we returned from Dallas, I stopped by Willie and Korie’s house with Mia to pick up something. When I pulled in the driveway, Willie stuck his head through an open window to say hello to Mia. He is the one who came up with her nickname, Mia Moo, and often calls her by that name or “Moo Moo.”

“Moo Moo, did you have your surgery?” Willie asked playfully.

My heart nearly broke when I turned and saw her try to hide her face from him. She has always loved Willie, so I knew she was ashamed of the way she looked. I tried to mask my tears as I pulled out of their driveway and into ours. That’s one of the big differences between an infant who has surgery and a five-year-old or older child. The infant feels no shame. Once children are old enough to become self-conscious, they do struggle with the visible effects of an operation, and that becomes a whole new dynamic for both the patient and the family to deal with. This was something I was not prepared for.

After the incident with Willie, I realized we had entered a new phase of handling Mia’s recoveries. After her previous operations, people had felt free to drop by with a meal or a gift for Mia or simply for a visit. That social interaction had been good for me. This time I said to Jase, “We don’t need a lot of visitors right now. I have to figure out how to talk to her about this.” Knowing that members of our church family were eagerly awaiting our arrival home so they could see Mia, bring her small gifts, and give us all encouragement, I called Alan and asked him to announce at the next church service that we were receiving no visitors for the next few days.

That same day, a couple of hours after our encounter with Willie, a wonderful godly woman named Joneal came to our door to drop off a present for Mia. I consider Joneal one of my mentors, so when I met her at the door and answered her greeting with silence and tear-filled eyes, she could see how hard the situation was. “You can do this, Missy,” she said. “I know you. You’re a strong woman. You can do this.”

I simply nodded my head yes and closed the door.

Unlike the first surgery, I was prepared for what I would see after Mia’s procedure. The problem was that Mia had no idea what she would see. The fact that she was not prepared for the way she would look hit me as hard as the first time I saw her after her surgery at three months. I remembered how shocked and upset I was at that time, so I could only imagine how she felt. I realized I should have done more to prepare her.

Now, whenever I have a chance to talk to parents whose children are scheduled for a surgery that will alter the way they look—even temporarily—I urge them to do their best to prepare their children ahead of time. That, for me, is one of the blessings of everything we have been through with Mia: I have the chance to help others avoid some of the mistakes I made, and that gives me a sense of purpose in the journey God has allowed Mia and our family to travel.