9

A RECOVERY, A REPRIEVE, AND A MAJOR CHALLENGE

WHEN I WITNESSED Mia’s reaction to her swollen face with the protruding nose stent and stitches, I recognized that she needed to understand that this stage of her healing process was only temporary. Every chance I had, I encouraged her with comments such as, “When your nose heals, we won’t have to deal with that stent anymore,” or “As soon as those stitches come out, you can go swimming again.”

Mia wasn’t old enough to have an in-depth conversation about how her current condition would ultimately improve her quality of life, so I had to put it into terms a five-year-old could grasp. While the first couple of days at home were difficult, she adapted rather quickly and, surprisingly, wanted to play and find other activities to fill up the day. While I certainly had to take care of her after the previous operations, I didn’t need to find ways to keep her occupied. This time was different. I definitely needed to keep her busy.

Although Mia wasn’t happy about missing even one day of pre-K, I knew it was the best idea. I let her do whatever she wanted to do to pass the time—within reason. She received many gifts after her surgery, including a bracelet-making kit. The day we returned home from the hospital, she wanted the two of us to create bracelets for every female member of our family. Although I was exhausted from the trip, I couldn’t refuse her request. So we sat at the dining room table for two solid hours of bracelet making. She put her best effort into each bracelet and meticulously wrote names on all of them with glitter paint. When we finished, she was so proud!

In addition to finding ways to help Mia spend her time at home, I had to deal with her newfound independence. Now she was able to express her opinion about things, and she was determined to do certain things herself.

When Mia was three-and-a-half years old, we realized we had completely outgrown our home, and we purchased a larger, older house across the street from where Willie and Korie were building a new home. Jase and I agreed to take a leap of faith financially, knowing we would be in a more secure environment because we were close to family, especially when he was traveling for Duck Commander. The house had a pool, which the boys, now nine and twelve, enjoyed immensely. Reed and Cole were strong swimmers, but Mia hadn’t learned how to swim so we were concerned for her safety.

After listening to various people’s advice about installing special gates and alarm systems, I finally decided the best defense was a good offense. So I taught Mia how to swim, beginning in the bathtub, showing her how to blow bubbles under the water each night. We “graduated” to the pool soon after and continued to work together.

Over the course of several weeks, she became a good swimmer for her age and gained confidence in the water. Even though she was young, the pool never intimidated her. She was determined to learn to swim, and she did. In fact, Mia was jumping off the diving board and swimming to the ladder before her fourth birthday, only three months after we moved into the house with the pool. I guess it’s safe to say that she gets a bit of her independence and determination from me.

There is a difference between independence and rebellion in a child, and Mia is not rebellious at all. She’s quick to say, “I got this,” and to take care of a situation to the best of her ability. I don’t think her determination and independent spirit come from just one influence, but from many, including the many physical challenges she has faced. I also believe that her role as the third child in a busy family—whose dynamics were already in full swing by the time she came along—has much to do with how she handles herself. I’m convinced that she simply saw that the family train was already in full motion and decided that she had better find a way to hang on! All of these factors contribute to her character of independence, self-assuredness, determination, and boldness.

Mia’s confidence blossomed in new ways as she recovered from her surgery. After we returned from the postoperative trip to Dallas to have her stitches and stent removed, she received a take-home stent that had to be cleaned every day—not a pleasant or easy process.

Mia wanted to clean her stent and care for her surgical wounds herself, with no help from me. In fact, she actually fought me on it, begging me to let her do it. I knew this was a good step for her, but it tried my patience because I could have completed the cleaning process much faster than she did.

The process involved removing the stent from her nose, washing it, and cleaning the blood and mucus from her nose with a cotton swab. Each day I sat and watched as she pulled off the tape that secured the stent, with her little hands shaking. She would start to do it, then talk herself out of it, then commit to doing it again, and then move forward. After she removed the stent, she hesitantly rolled the cotton swab in her nose to clean it. As a task-oriented person, I often thought, Let’s just get this done, but Jase encouraged me to go easy on Mia and be patient with her, which I did as best I could. In the end, that was the right thing to do because it gave her a sense of control over her recovery.

“I Want to Go Back to School”

For a few days, Mia was happy enough at home, especially when she was making crafts or playing with her toys, but before long she started asking when she could go back to school. Her class had been so sweet to her while she was recovering, drawing pictures for her and trying to write her name on them. They did their best to support and encourage her in their five-year-old ways, and she missed them.

The problem with her going back to school so soon was that she had to wear her nasal stent every day for another month to keep her nasal passages from collapsing. I wasn’t ready to expose her to what I thought would be finger-pointing and laughing and other children making fun of her. In addition, she wouldn’t be allowed to do any physical activity because an injury at that point in her recovery could be a serious setback. All I wanted was to protect her.

After several days of Mia’s pleas and my saying “You can’t go yet,” I talked to her teacher and finally decided it was okay for her to return. That morning, she did not give a second thought to the very noticeable stent taped across her nose. It never bothered her—she was thrilled to be back in school.

In that situation I relearned an important lesson I first learned soon after she was born. Once again, I was trying to protect myself as much as I was trying to protect her. I wanted her to be spared the questions and potential ridicule of other children, while she wanted to get back into her routine and be with her friends. Only after I let her make the decision to return to school did I realize that that was exactly the right thing for her to do.

Once Mia recovered completely, she resumed her normal level of social activities. Not only did she continue to enjoy school and have fun with her friends, she was also happily involved in our church activities. I describe her as “an active child who wants to be active.” She loves life and wanted to be part of everything.

With two older brothers who were both athletic, Mia was familiar with sports. Since we spent many summer days and nights at the baseball fields, when Mia became old enough to join a softball league, she told us she really wanted to play. Jase began practicing with her in the yard, and after a few days, I asked him how she was doing.

“She’ll get killed out there,” he replied, thinking about tiny Mia playing with bigger, more aggressive kids. However, Jase did notice that she was a fast runner, so we introduced her to soccer, where she succeeded quickly and was on two consecutive championship teams. We were thankful that she had the opportunity to play those two years before her next big surgical procedure—a bone graft.

This Is Not Easy

When Mia was seven, Dr. Jeff decided to take the first steps for fitting her with braces and preparing her for the “biggie”—bone graft surgery. Mia’s first orthodontist, Dr. Jeff’s father, had retired by this time. She was now under the care of Dr. Jeff, our surgeon’s brother. At our first appointment, he placed an expander in Mia’s mouth. I was familiar with this common orthodontic apparatus. In fact, Cole had needed one, so I knew the routine of turning the key each night to increase the amount of space between the teeth.

A few months later, we returned to Dallas to see Dr. Jeff again. We learned that a fifteen-millimeter difference existed between the projection of Mia’s upper jaw and her lower jaw, a major deficiency. Scar tissue had developed behind her upper jaw after the palatal surgery when she was seven months old and, as a result, had prevented her upper jaw from growing at the same rate as her lower jaw. In an effort to pull the upper jaw forward as much as possible before the bone graft surgery, Mia had to wear special headgear. This was not the usual type of orthodontic headgear many children wear at night; I can only describe it as “Hannibal Lechter-ish,” a painful, harsh-looking piece of equipment that was difficult to imagine any human being having to wear.

The day Mia got her headgear, Dr. Jeff attached hooks to her teeth and showed us how to attach rubber bands in a way that would achieve the desired result. This, of course, made Mia’s teeth very sore, and I could hardly stand the thought of her having to endure the pain of wearing it. She would have to wear the headgear twelve to fourteen hours a day for anywhere from a year to eighteen months. As long as her jaw was moving, she needed to wear it. When the movement hit a plateau, Dr. Jeff explained, we would know it was time for the bone graft surgery.

“Of course, Mia can take a break from the headgear once in a while,” he said. “Say for one night if she has a friend over or for a special event.” I knew this was going to be a problem because Mia often spent nights with her cousins, much more than “once in a while.”

My mom was with Mia and me that day, and we left the office for our regular four-and-a-half-hour drive home with Mia feeling uncomfortable because her mouth hurt and with me on the edge of tears, knowing what was in store for her for the next twelve months, if not longer.

As a precautionary safety measure, Mia would not be able to participate in any physical activity while she wore the headgear. No soccer, no riding her bicycle, no running and playing with her cousins, and no jumping on the trampoline with Bella, which was one of her favorite things to do. My heart was broken, knowing that the happy, carefree, fun lifestyle she enjoyed so much was going to change dramatically. I was relieved when Dr. Jeff told her she didn’t have to wear the headgear to school, but she would have to put it on immediately when she got home from school, take it off only to eat dinner, wear it through the night and up to the minute she left for school in the morning.

Early on in Mia’s journey, I decided to enjoy the periods of time between surgeries without allowing myself to think about the next operation or to look too far ahead. I am thankful to say that I did that well, staying focused on all the good things about our family’s life from day to day until those moments when I found myself sitting in a doctor’s office hearing him say, “Here’s what’s next.”

The headgear was a whole new set of circumstances. It was not a surgery, but it was not a worry-free time either. Every day we had a visual reminder of the procedure that lay ahead—and it was a big one. I knew I needed to accept this new dynamic of Mia’s life, but I struggled greatly. Looking back, I know that Jase, Reed, and Cole were startled when they first saw Mia wearing it as well, but they kept their reactions hidden from her.

Not only was the headgear unattractive and intimidating looking, it was difficult to deal with. The rubber bands had to be attached in specific ways in order to pull her jaw forward correctly.

For more than a week after she got the headgear, I followed the routine vigorously with Mia when she came home from school. Every time I had to put it on her, she fought me. I hated having to do it because it caused her so much pain and always resulted in tears for both of us. I never let her see me get emotional, and I tried my best to keep my composure, but many times I had to turn away so I could wipe my own tears. She begged me to leave the headgear off for longer periods of time, but I knew I couldn’t. Dr. Jeff had explained the importance of wearing it, and as a mom, I try to accept the facts as the doctors give them to me. I am committed to obeying doctors’ orders.

I knew in my head that this grueling ordeal was the best thing for Mia, but my heart was a mess. I cried constantly. This was just not like me. Get a hold of yourself, I demanded in my head, followed the next moment by more tears and wondering, What is wrong with me? Jase and I prayed for strength and endurance, but I was having difficulty finding peace with the situation.

I have a strong circle of friends—my sisters in Christ—whom I can call on whenever I need them. Normally, I’m not one to ask for help, but at this time in my life I felt a desperation that demanded assistance. I sent a group message asking them to pray for me and lift me up to the Father. They immediately responded to me with words of encouragement and confidence that Mia and I could get through this. I knew they meant it, that they were going to follow through with their promise to pray for me. These women reached out, took my hand, and are still holding on to it today. They love me with all of their hearts, and I know how blessed I am to have them in my life.

Back to Dallas

A week after Mia received her headgear, we had to go back to Dallas for an annual checkup with Dr. Genecov. When he asked me how things were going with the headgear, I began to tear up, and I’m sure he could tell by my voice that I was having a difficult time.

Trying to be helpful, he said, “Well, our goal is to get her jaw to move a little more than one millimeter.”

One millimeter? I was shocked and angry. “We are trying to get her jaw to move one millimeter—when it is fifteen millimeters deficient? This headgear has disrupted her entire life. And we are going through all this for one millimeter? What difference does one millimeter make?”

Possibly taken aback by my strong reaction, Dr. Genecov quietly replied, “Every millimeter counts.”

I’m certain he could tell by my expression that his answer was not good enough for me.

He continued, “Any time we have to do the distraction surgery to correct more than ten to twelve millimeters, the chances of success are much lower. That is why every single millimeter counts.” (During a distraction surgery, the patient’s top jaw is broken and moved for better alignment with the lower jaw.)

While his explanation gave me a clearer picture of this situation, I still was not happy about this ultimate goal, and I thought the headgear was a lot to put Mia through for one millimeter. I immediately thought, This is not acceptable to me. I am not ready to settle for one measly little millimeter! My week of grieving was over. I was ready to get to work.

A Bold Request

Since the age of twenty, I have sung on the praise team at our church. Every Sunday morning before the worship service, the team prays together. If anyone has a particular need, the person can mention it, and the team will pray right then and there. The Sunday after Mia and I returned home from Dr. Genecov’s office, I told the team about our situation. Then I made a bold request, “These expected results are not good enough for me. I need this headgear to break all records! I am asking y’all to pray this specific request—that Mia will not have to undergo the distraction surgery.”

My fellow praise team members agreed to pray with me and faithfully prayed during the following weeks and months.

One point I emphasize when talking with moms of other children with special needs is that having a support system is not just important—it’s crucial. The emotional aspects of having a child who must undergo surgery or treatments can be quite draining, and tending to a child’s unusual physical needs can be exhausting. Feeling overwhelmed at times is to be expected—and it’s okay.

The support system does not have to be large; it needs to be strong and dependable. I thank God for mine!

A Good Friend

One of Mia’s favorite things to do is to spend the night with her cousins at Mamaw Kay’s house. Not long after we returned from Dallas, I was picking up Mia and Bella from Jessica’s house, where the two of them had spent the night. I had let Mia have the night off from wearing her headgear. As the girls were chatting in the backseat, I heard Bella tell Mia, “Mamaw Kay wants us to spend the night with her tonight, and she wants Lily and Merritt to come too.”

Miss Kay goes all out when her granddaughters spend the night. For the girl cousins, Miss Kay’s is the place to be. They absolutely love it because she really makes an effort so that their time together is special. She had turned the old Duck Commander offices into a “library” for them, housing hundreds of books, old cash registers, adding machines, and all kinds of abandoned equipment she used during the first years of running a business—the kind children love to play with. She also turned the old duck-call and reed-making shop into the “Lickety-Split,” a large playhouse in which each of her younger grandchildren have their own desk or play area filled with toys and projects. The name for this special place came about one day when someone served Mia a plate of pretend food “prepared” in the playhouse. “Wow! That was lickety-split!” she said. Everyone agreed it was the perfect name. How many kids have two separate playhouses to encourage such creativity? Well, at Mamaw Kay’s they do!

Mia was so excited at the thought of spending the night with all her cousins again. But when she asked me if she could go, I had to tell her no because she couldn’t skip wearing her headgear two nights in a row. “You can spend the night with Bella, or Bella can spend the night with us, but I cannot let you go to Mamaw Kay’s,” I told her.

At that point, I was the only person who could help her get the headgear on and off. I could do that easily at Bella’s house because she lives right across the street from us, but Phil and Kay lived quite a distance away. “I can’t send you to their house with that headgear unless you are ready to put it on and take it off by yourself.”

Mia was crushed, and my heart broke for her. But I knew I could not allow her to be too far away from me quite yet.

Realizing Mia’s disappointment, Bella piped up. “It’s okay, Mia,” she said, “I’ll stay at your house tonight. I don’t have to go to Mamaw Kay’s.” I knew instantly what a huge sacrifice that was for Bella, and I appreciated her thoughtfulness and kindness.

But Bella was not finished. “And I’ll help you learn to take your headgear off and put it on,” she continued.

“No, I can’t do it,” said Mia.

“Come on, Mia” said Bella, coaxing her cousin gently. “We can do it.”

Quiet tears streamed down my face as I listened to this sweet interaction between these ten- and nine-year-old cousins. Bella was willing to give up a night in the Lickety-Split to help Mia learn how to manage this new phase in her life. If only adults could be this sacrificial!

Bella did spend the night with us and helped Mia learn to deal with her headgear. Mia mastered it within a couple of days. All she needed was a little encouragement and support, which Bella provided. This accomplishment gave Mia a new level of independence. She could now spend the night away from home whenever she wanted.

What I wasn’t prepared for was Mia’s next announcement: “I’m going to wear this to school.”

Shocked and concerned about how other children would react when they saw her, I protested, “No, Mia. The doctor said that you don’t have to.”

But Mia had already thought the situation through. “Mom, if I wear it at school,” she explained, “then I don’t have to wear it when I get home from school, and I can play with Bella and ride my bike. I’ll wear it during math and a couple more classes so I have more time to play when I get home. I mean, I’m just sitting at my desk anyway!”

I had to admit, even though I was nervous that people might make fun of her or ask inappropriate questions about her headgear, Mia’s idea made sense. It was very practical, just like Mia. Once she got that plan in her mind, I could not talk her out of it.

Mia loves to be at school. She’s extremely secure and self-confident; she really doesn’t care what other people think about her. So we picked out a nice black-and-white bag and embroidered “Mia’s Headgear” on it, and off she went to school, to manage her headgear all by herself. She figured out exactly when to put it on and when to take it off in order to get in all of her required hours and still be able to take it off for lunch, recess, and physical education class. She had done the math and figured out that she would have three-and-a-half hours to play, headgear-free, every afternoon after school.

It wouldn’t be long before a situation arose that affirmed Mia and her decision.

“This Kid Is Phenomenal!”

One of Mia’s classmates also needed to wear orthodontic headgear to correct an underbite. Although his headgear wasn’t as complicated as Mia’s, he didn’t want to wear it as long as he needed to each day and balked at his mother’s insistence.

A few days after Mia showed up at school in her headgear, the little boy’s mother stopped me at school and told me how she had been struggling with her son about his headgear. “But last week he came home after school so excited and said, ‘Mom, you will not believe what Mia has on!’”

“What?”

“Headgear! If she can do it, so can I!”

When I told Mia the story, her entire face lit up. She was so proud of herself, but more than that, she loves to help others. Knowing she had given someone else courage and strength was a great blessing to her.

During that year, we had an appointment with Dr. Sperry, whom Mia saw only once a year for speech evaluation. Before the visit I told Mia that the doctor would have lots of questions, and that she needed to be the one to answer them, not me.

Dr. Sperry did indeed have a lot of questions for Mia, which she answered in great detail—telling stories and being a bit sassy and funny. Every few minutes, Dr. Sperry would glance at me and grin.

Finally, she said to Mia, “Okay, are you ready to go see Dr. Genecov?”

“That’s it?” Mia replied. She paused, then cut to the chase, “How’d I do?”

The doctor seemed confused by Mia’s questions, so I explained.

“I told Mia she needed to answer your questions and speak freely because you were analyzing her speech.”

Looking at Mia, Dr. Sperry said, “Let me tell you something, little girl. You have no need for speech therapy!”

“Sometimes, my teacher tells me to repeat something I said, but that’s only when my headgear is on,” Mia blurted out.

Dr. Sperry looked at me in disbelief. “She wears her headgear to school?”

I nodded.

“In my entire career here, I have never heard of a patient wearing headgear to school. In fact,” she continued, “most children who come into my office keep their heads down and have a hard time looking me in the eye. The fact that Mia interacts with me in the way that she does and wears her headgear to school says a lot about her character. This kid is phenomenal!”

I knew she was a special kid. But I was learning more and more just how extraordinary she really was.

How Many Millimeters?

When Mia first got the headgear, Dr. Jeff sent us home with a form for us to record the exact hours Mia wore the headgear each day. At our first six-week checkup, I gave the sheet to the dental hygienist in Dr. Jeff’s office before we went in to see him.

“Is this total correct?” she asked.

“Yes,” I said. “Why do you ask?”

“Because no one ever wears it this much.”

“But that’s what you told us to do,” I said.

“Yes, but no one actually does it. Most parents make their child wear it about 250 hours. Good job, Mom!” Mia’s hours totaled 464.

What? Seriously? I was stunned. As much as I hated this headgear and how it was affecting Mia’s normal lifestyle, I never gave a second thought to following the doctor’s orders. I was astonished to learn that most parents don’t, saying it’s inconvenient or they don’t want to fight with their child. I constantly try to see the big picture and understand why certain things must be done now in order to ensure good results in the long run. If an expert tells me something will benefit my child, I will do it. The headgear is an extremely challenging part of cleft lip and palate treatment, and I urge every parent who has to deal with it to do what must be done. It’s not pleasant, but it is necessary, and it can save a child and a family a lot of additional trouble in the long run.

In fact, after that first checkup I decided to push Mia a bit more and told her that if she wore the headgear for 500 hours each six-week period, I would buy her an American Girl doll accessory when we went to Dr. Jeff for her checkup. That’s all it took. She met the goal each and every time, and she has a basketful of American Girl doll clothes to prove it.

When Mia saw Dr. Genecov after a full year of wearing her headgear, he was amazed and so were we. Diligence, faithfulness, and lots of prayer from many people had worked a miracle. Mia’s upper jaw—the one they wanted to move one millimeter—had moved a full ten millimeters! We broke the records.