12

LITTLE GIRL, BIG IMPACT

FOR YEARS, our life has been a series of doctor’s visits, preparing for surgeries, and looking ahead to the next surgery, knowing it is coming but not allowing the thought of it to rob us of any joy in the present moment. A day will come, though, when either Mia or her doctors decide there will be no more surgeries. Someone will say, “That’s it,” and surgeries for her cleft lip and palate will be a thing of the past for us. If doctors declare an end to the surgeries, it will be because they have done everything they can possibly do from a medical perspective.

At ICI, the doctors are very much in tune with how patients feel about themselves, and diligently try to help them feel as good as possible. The plastic surgeons especially want their work to look the best it can. Once all the surgeries based on medical needs are complete, patients can choose to have additional surgeries for cosmetic purposes if they would like. When that time comes for us, we will let Mia decide what she wants to do. That’s a conclusion we came to after sitting in lots of waiting rooms and talking with countless parents of children with cleft lip and palate who are ahead of us on this road.

As much as we must think about Mia’s condition, we do not allow it to consume our lives, and she does not allow it to consume her life. She loves her friends, family, school, and church, along with piano lessons, singing, cheerleading, gymnastics, American Girl dolls, pretty dresses, and many other things that little girls enjoy. She approaches each activity with confidence and determination, embracing every moment with a big, bright smile.

Reaching Out

Jase and I decided early in our journey with Mia that we would do our best to try to help other families going through the same situation. When Mia was first diagnosed, we were grateful for the advice we received from other families dealing with cleft conditions, but we also realized that help and support were not abundant. Whenever we became aware of a child with a cleft, we did our best to be available to the family, whether that meant visiting them in the hospital, sharing the names of our doctors, or letting them know what had been helpful or important to us (such as using the tape after the first surgery). We truly felt one reason God allowed us to walk the path He chose for us was to help others, and we wanted to do that in every way possible.

We first started trying to help people about nine months after Mia was born. Through my work at the clinic, I found out about a family who was expecting a baby boy with a cleft lip and palate. I called them and talked to them before his due date, doing my best to help prepare them. When the baby was born, the realities of his condition were completely overwhelming to the family, even though I had told them everything I knew to lessen the shock. They called me right away. That day, I was unable to go to the hospital because Mia was running a fever, so I asked Jase to go see them.

“I really don’t want to do that,” he said.

“Then I need you to come home and watch Mia so I can go.”

In the end, it was just easier for Jase to go. Later, when he came home, he described the heart-wrenching scene to me. The baby appeared to have a much more severe condition than Mia did when she was born, and the parents and other family members were beside themselves. Jase recalls walking into the waiting room adjacent to the nursery, where family members could see the baby through a window. The room became awkwardly silent as the large crowd stared at Jase, almost all of them with tears in their eyes. The only thing he could say was “It’s going to be okay. I have a daughter with a cleft lip and palate.”

He says he felt that the whole family looked to him for support and answers, almost hoping for the magic bullet that would get them out of their situation. He and I both understood how they felt, and he gave them all the encouragement he could—even showing them pictures of Mia before and after both of her surgeries. He did his best to help them feel better and to prepare them for everything they would face in the days and weeks to come. Though it was an emotional experience for him, the family appreciated his efforts, and we are still in touch with them.

In West Monroe, we know of one child who is about six or seven months ahead of Mia—the Stegall’s son—in treatment for cleft lip and palate and one who is about nine months behind her (the one Jase visited in the hospital when he was born). The family whose child is farther along than Mia in treatment has been so valuable to us, and we have tried to be just as supportive to the family whose child is younger than Mia.

In fact, four families whose children were born with clefts once got together with the rest of the Robertson family for a Christmas party that Jase and I hosted, which was filmed for Benelli Presents Duck Commander. We had come to know all of the families at ICI. Even though we lived within a few miles of each other, our paths crossed only in a doctor’s office or a hospital in Dallas. But that day, we simply got together for a celebration. Our surprise party guests included one of the surgeons and the anesthesiologist from ICI. It was a happy, memorable time for all of us.

A Way to Help Others

Once Duck Dynasty started and Jase and I realized God had given us a significant media platform, we immediately knew that one way we wanted to use it was to raise awareness of cleft lip and palate. By that time, we had seen the impact our faith had on several local families, and we realized that we had been able to help them through some difficult circumstances by sharing the knowledge and experience we had gained and, most of all, by letting them know they were not alone. We felt led to establish a charity—the Mia Moo Fund (www.miamoo.org)—dedicated to helping families going through exactly what we have faced.

The Mia Moo Fund not only provides education about cleft lip and palate, but also provides as much practical assistance as possible to children who are undergoing treatment and to their families, such as offering financial assistance for bills not fully covered by insurance or helping parents with travel expenses.

Through this organization, we can support many families we might never have come in to contact with, had we not experienced cleft lip and palate firsthand. Because of Mia and her journey, we care deeply about these families and are honored that we are able to help them.

Mia Makes a Difference

I love so many things about being Mia’s mom, and one of them is the fact that she cares so much about other people and does all she can to help them. I saw this when she was so excited about her positive influence on her classmate who was willing to wear his headgear to school after she started wearing hers, and I have seen it in countless other ways throughout her life. Numerous people have shared with me that Mia has made a difference in their lives—inspiring them; giving them hope, confidence, and courage because of what they see in her; and strengthening their faith as they observe her childlike faith in action, even when she faces daunting events such as major surgery. I could write pages and pages about Mia’s impact on people’s lives, but in this book I simply want to share two letters from people who mean a lot to Mia.

In February 2014, Mrs. Rita at OCS asked her fifth-grade students to write a letter to someone who really inspired them. Mia’s cousins, Bella and Lily, both had this assignment. The two of them never discussed whom they planned to write about in their letters—until the day they handed in the assignment. Bella and Lily had both written their letters to Mia. Here are their letters:

Dear Mia,

You made me the person I am today. You made me stronger. You are the biggest impact in my life. I’m writing this letter to you because in Bible class at school, we were talking about people who made an impact on our lives, and I thought about you. You’re so special. God’s been with you all your life, and I have too. I have been praying for you every night. I’m so glad we’re so close. You’re my best friend, and I couldn’t live without you. You’re my inspiration. We ride bikes together and have so much fun. You’re so brave, and I can’t wait to see what you do next.

Love,

Bella Rob

Dear Mia,

If I had to pick the bravest person, it would be you. You are an inspiration to a lot of people. You have had a lot of tough surgeries. You are always happy though. You had to go a long time without Chick-fil-A, which is crazy since nobody can do that but you. I love you, Mia Moo Moo!

Love,

Lily

During their chapel time that day, Bella and Lily read their letters aloud to the rest of the fifth and sixth graders. Mia was in the fourth grade and had a different chapel time, so she wasn’t aware that either of them had done this until they told her after school. I happened to be at the school that day, and shortly after the girls read their letters aloud, some of the teachers saw me, and with tears in their eyes, told me what Lily and Bella had done.

Wow! I knew that Jase and I were doing our best to make an impact on people’s lives through our own difficulties, but that day I got to see how much of an impact Mia herself was making on the people closest to her. Of course, I ended up crying right alongside those teachers.

Mia Robertson Goes to Washington

A couple of weeks after Mia’s bone graft surgery in January 2014, she received a letter from Congressman Trent Franks of Arizona on official United States Congressional letterhead. Mia was so excited about the letter, she stood on the fireplace hearth (the living room stage) and proceeded to read it to the entire family. In the letter, Congressman Franks told Mia that he, too, was born with a cleft lip and palate and underwent many surgeries as a child. He told her he understood how she felt and told her not to get discouraged because he recognized how she is helping so many people. He invited her to Washington, DC, to receive an award from Congress for service to her community.

As soon as she finished reading it to us, she exclaimed, “Can we go?”

Knowing how Jase puts little value on earthly awards and how he likes to travel even less, I responded with a phrase that most parents can understand and appreciate: “We’ll see.”

Mia immediately ran upstairs and tacked the letter to her bulletin board, full of hope and optimism. How could Jase say no to this?

Oh, she knew her daddy well. He couldn’t, and he didn’t.

That summer, Mia, Jase, Reed, Cole, and I spent a few days together visiting monuments and historical sites in Washington, before meeting Mr. Franks on July 8 in his office on Capitol Hill. There were a lot of tourists everywhere we went, and as we were trying to take photographs and read about the monuments, we were recognized by the crowd, who wanted to take pictures of us. We appreciate our fans so much and always do our best to accommodate them, so getting around Washington took longer than usual. Mia took everything in stride and had a great time. Her favorite monument was the Lincoln Memorial because she had learned about it in school and thought it was cool to see it in person.

Congressman Franks presented Mia with a Certificate of Special Congressional Recognition for “outstanding and invaluable service to the community” at a press conference held at the foot of the Capitol steps. Both he and Mia made speeches that day to numerous cameras and reporters. Hearing my ten-year-old daughter speak about her condition and how she hopes people will look to God to help them get through their own problems was an unbelievably proud moment for me, Jase, and her brothers.

After the press conference, Mr. Franks took us into the House chamber where Congress was voting on a new bill. He took Mia down to the floor, introduced her to some of his colleagues, and let her push his voting button for him. When some of the other members of Congress saw this, they also asked her to push their voting buttons for them.

Of course, Mia wasn’t going to push any buttons without quizzing these representatives about what exactly she was voting for. She needed to know what was in the bill before she pushed the buttons. If she agreed with the bill and saw that some members were voting “no,” she commented, “That’s just rude.” Mia was thrilled with the experience and told us all how she helped make history. Little does she know just how much history she has made and continues to make.

Lessons Learned

People sometimes ask me what I have learned as a result of having a child with medical needs. Having a child with any type of special needs is not a neutral experience; it affects people—often profoundly—one way or another. If I had to summarize how Mia’s journey with cleft lip and palate has affected me, I would say it has been a learning experience. I hope and pray some of the lessons I have learned will strengthen and encourage parents who are walking a similar path to the one I have walked as Mia’s mom.

I have learned that when people endure suffering, there is a richness that comes to life that they would never experience without it. As I write this book, Reed is nineteen years old and Cole is seventeen, and they have never dealt with the physical challenges and pain Mia has endured. If we did not have Mia in our family, I wonder if we would have lived a good but somewhat shallow life. She has brought so much depth to our lives and to our faith, and she has brought so much meaning to what life is all about.

Mia has taught everyone in our family not to take life so seriously. If anyone has a reason to be sober about certain things, she does. Instead, she is lighthearted, and she trusts God. She does not worry excessively, and she is not a complainer. Of course, she does not always want to do her homework, and she may not like to be encouraged to eat certain foods or to cut short her playtime. But she has never complained about her condition, and that is amazing to me.

I also believe having Mia has made Jase and me better parents to Reed and Cole. Without her, we might have been tempted to take them for granted. Because of the challenges we have faced with Mia, we have always been thankful for the boys’ health and well-being, and we have tried to value every moment we have had with them.

One of the lessons I have learned specifically about Mia’s cleft is that it is not a problem to be fixed; it is a process to be managed. In the beginning, I simply wanted the surgeons to correct the defects in her lip and palate. It’s not that easy. Humans will never be able to recreate what only God can create, no matter how skilled they are. What we can do is manage the challenges we face, get the best care possible, and aim for the best results so a child can have the maximum quality of life as he or she grows older. That’s the way Jase and I approach Mia’s condition, but we had to learn to see it that way. We could both accurately be described as problem solvers. We like to fix things and move on, so being able to manage a situation with multiple steps over a long period of time instead of trying to fix it all at once was a huge learning curve for us.

Not long after Mia was born, Miss Kay told me something I have always remembered. She said, “God gave her specifically to you because He knows you can handle it. He knows you and Jase will be the best parents she could possibly have.”

She went on to ask, “Can you imagine what her life would be like if He had placed her with an immature couple? They just would not be ready for her.”

“But I’m not ready either,” I said.

Miss Kay responded, “God is saying that you are.”

* * *

I was reminded of this conversation during the first few days after Mia’s distraction surgery. Dr. Genecov had sent us home from the hospital with a special tool for me to use to manually move each piece of Mia’s jaw forward one-half of a millimeter each day. He compared it to an orthodontic expander, which I was all too familiar with. However, this was nothing like that expander. With this appliance, I had to tug and pull on Mia’s swollen lips and cheeks in order to reach and remove a protective rubber cap from a metal screw on each side of the inside of her mouth, insert the tool onto the screw and turn it one full turn. It didn’t click, snap into place, or give any other sign that it was inserted correctly. The only way I knew that I was completing the task efficiently was when my daughter cried out in pain.

One of the cast members on Duck Dynasty is John Godwin, known simply as Godwin. Godwin’s wife, Paula, is an RN who is part of my personal support system, so I asked her to be there with me when I first started doing this in case something unexpected happened. Being the wonderful, calm, and skilled soul that she is, not only did she come to our house every day for a week to assist me in this grueling process, she also brought Mia a snow cone to help numb her mouth before each painful episode.

After four days of turning the device, I had a heart-to-heart chat with Paula and Jase in our kitchen, away from Mia’s ears. I told them that my biggest fear was showing up at Dr. Genecov’s office in three days and hearing him tell me, after looking at her X-rays, that her jaw hadn’t moved a bit. I was overwhelmingly unsure whether I had been doing the adjustment correctly.

Is this the expected recovery process? I wondered. Am I putting my daughter through all this pain for absolutely nothing? How in the world am I supposed to know?!

Three days later, Mia and I went back to Dallas for X-rays and the follow-up with the doctor. To my relief, the X-rays showed that her jaw was moving and coming together perfectly. Whew!

However, I needed some answers.

“I have a question,” I said. “Do you send this tool home with every parent, tell them what to do, and just hope for the best? This is a very meticulous task.”

He raised his eyebrows, then looked at me very calmly and said, “No . . . but you’re medical.”

Surprised at his answer, I answered, “No, I’m not.”

“Didn’t you work in an ob-gyn clinic for a few years?”

“In the office!” I quickly clarified.

“But you are a nurse.”

“No, I’m not!”

He squared his shoulders, looked me in the eye, and said, “Yes, you are.”

Oh, I get it now. Responsible Missy rides in again. You know what I wanted to scream to him? “Wait just a doggone second. Why am I so special? I am sick and tired of being so stinkin’ responsible! Why can’t I just be like other people I know and be irresponsible and selfish, just this once? It always seems to work out for them. People I know get away with it every day. Why can’t I be just like everybody else this one time?”

Then it hit me. Because that’s who Mia needs me to be. That’s what Miss Kay was talking about when she said that God chose me to be Mia’s mom. Nobody else.

Throughout this process, those kinds of thoughts would creep into my mind, so I understand other mothers who also feel that the special needs of their children can be overwhelming at times. When Mia was first born, I didn’t want to be as mature as I needed to be, and I didn’t want to be as solid and steadfast as I knew I needed to be. There were moments I felt God had been unfair to ask me to deal with the situation He had given us. But God never says life is fair. His Word says He disciplines those He loves (Hebrews 12:6). Every step of our journey with Mia, we have been aware of how much God loves her and how much He loves us.

God Is There

I believe the most important lesson I have learned is the truth of Deuteronomy 31:8: “Do not be afraid or discouraged, for the LORD will personally go ahead of you. He will be with you; he will neither fail you nor abandon you” (emphasis added).

At the beginning, I remember having many questions about where God was in the midst of our situation. What just happened? I wondered. Did God get distracted when Mia was being formed? Did He turn His head for just a second, and this happened when He wasn’t paying attention?

I felt guilty about asking such questions, but I’ve come to understand that they are normal and understandable when facing a crisis, especially a crisis involving a child. Deep in my heart, I knew God was bigger than all my questions and bigger than the entirety of our situation. By that time, I had known for years that nothing happens that He does not allow. At times I could rest in that knowledge, and at times I thought, Okay, then why has He allowed this to happen to me?

I know some people think questioning God represents a lack of faith; I don’t see it that way. I think questioning God is okay. In fact, it can be a really good thing to do because asking questions often is the only way to find answers. God Himself says in Jeremiah 29:13, “If you look for me wholeheartedly, you will find me.” Had I not allowed myself to wonder where God was at certain points along my journey with Him, I would not have come to the unshakable conviction I now hold—that He will never leave us, no matter what.

Because of Mia’s condition, our family has met people we never would have encountered otherwise. This also means we have had opportunities to share our faith in ways we might not have had. Early in our experience, I learned to say, “Because we are in this situation, God will be displayed to someone who might have never sought Him otherwise.” Boy, has that been true because of Mia!

This is where our faith and trust in God come into play. He knows so much better than we do what is best for us. I knew that in my head at one time, but our experience with Mia has made it a reality in my heart. I’ve also come to know that God loves my children even more than I do. At times, I wonder if that is even possible. I mean, I think I could stop an oncoming train if it were racing toward Reed, Cole, or Mia. I have that much love for them and that much will to see them protected. I have heard stories of parents who have picked up cars or tractors when their children were trapped underneath; that’s how great their love is. As a mom, I understand that. But I also understand that as hard as the concept is to grasp, God loves my children even more than I do. That one thought helps my faith and trust that He is doing what is best, even if I do not fully understand why or how.

Looking back, I now know the answers to questions such as “Where was God when Mia was diagnosed?” I am convinced beyond any shadow of doubt that He was with us. He was right there that day. His eyes were on me; His Spirit was in me, leading me, guiding me, comforting me. Even during the times that I struggled to believe, God was loving Mia and caring for our family in ways I cannot begin to comprehend. Because this is true for us, I can say with absolute conviction and with gratitude that my life is blessed in every way.

More Than I Can Ask or Imagine

When Mia was first diagnosed, one of the major concerns we had was her speech. Being from a musical family, I was highly concerned about my daughter being able to carry on the talents that were passed down to my boys and me from my mom’s side of the family. My mom has a master’s degree in vocal music and taught me everything I know about vocal performance. I, in turn, have passed my knowledge down to Reed and Cole over the years and planned to do this with our baby girl. But when Mia was born, I realized that this dream of mine might be much harder, if not impossible, for her. However, she not only learned to speak clearly; she also learned to sing beautifully. Her first public debut was singing “God Bless America” on a Duck Commander video when she was only three years old.

Paul wrote in Ephesians 3:20-21, “Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen” (NIV). Amen to that!

* * *

A few months before her bone graft surgery, Mia asked if she could go with me to my next speaking engagement and talk about her cleft. We sat down and wrote a speech together—becoming a dynamic dual package for this event and others that followed. After I spoke, I introduced Mia. She gave her speech and sang “This Little Light of Mine”—the Addison Road version, reminding everyone that “There is a little flame inside us all” and how important it was to let it shine, no matter what. Every time she has given this speech, she receives a standing ovation, with lots of whooping and hollering and quite a few tears brushed away from faces in the audience.

Mia gave a speech on March 7, 2015, just three weeks before her distraction surgery. I’ve included it here in the hope that you, the reader, will hear Mia’s voice and share in her courage, which she so willingly displays in order to encourage others to make the decision to be brave and keep going.

This ability for Mia and our family to use our challenges to benefit others is just one more reason I consider myself blessed.

My name is Mia Elaine Robertson, and I was born on September 12, 2003. The doctor wanted to deliver me on 9/11, but my mom asked her to wait until the next day. She said I was going to have a few problems to overcome in life already and she didn’t want my birthday to add to that. You see, I was born with a cleft lip and cleft palate. My mom and dad knew about it ahead of time because they saw it on an ultrasound, so they were able to find me the best doctors in all of America before I was even born. The doctors work in Dallas.

I’ve had five surgeries so far. My last one was on January 3, 2014. It was a biggie. They took bone from my hip and put it in my top jaw. I had to drink all my food for three months. I did okay with this, but I really missed Chick-fil-A! I have another surgery in a few weeks on March 27, 2015.

When I think about my cleft, sometimes I feel like people laugh at me. But I think like my dad did when he got kicked out of the Trump Hotel;[4] I just need to laugh it off. I’m not the type of person who sits around and thinks about it all the time. I’m too busy with other stuff like school, piano, cheerleading, music, and playing with my cousins.

I tell you this about myself because I believe that God has called me for a special purpose, just like He did Moses in Exodus. Moses couldn’t believe that God, the Creator of the entire universe, would pick him to do such a big job for His people. He made excuses to God about his speaking ability in Exodus 4:10-12:

[Moses said,] “Master, please, I don’t talk well. I’ve never been good with words, neither before nor after you spoke to me. I stutter and stammer.”

God said, “And who do you think made the human mouth? And who makes some mute, some deaf, some sighted, some blind? Isn’t it I, GOD? So, get going. I’ll be right there with you—with your mouth! I’ll be right there to teach you what to say.”

THE MESSAGE

Just like He called Moses, God has called me to use my mouth to share the message of Jesus with thousands of people.

I hope I can grow up spreading the love of Jesus to lots of people so they can go to heaven with us. My favorite verse is Psalm 46:10, which says, “Be still, and know that I am God!” I like this verse because whenever I feel sad or have struggles, I know that God is bigger than all of that. And He is bigger than any of your struggles, too. And don’t forget that.

Thank you.

—Mia Robertson (age 11)