7

NEW REALITIES

ONE OF THE BIGGEST emotional adjustments I had to make after our first trip to Dallas was embracing the truth about Mia’s condition. I thought I had done a good job facing the realities of her cleft lip and palate, but once Jase and I listened to multiple doctors discuss numerous surgeries and talk about her still being in treatment five, ten, or twelve years from that day, the seriousness and the long-term ramifications of her situation really began to hit me.

Any time I hear about others who are experiencing circumstances similar to Mia’s, one thing I want to share with those parents and families of children with special needs is that I went through a grieving process. I want others to know that grieving is healthy and normal, not something to be repressed or something to feel guilty about. Let me explain.

Even though no one had died, the grief I felt in the weeks and months after Mia’s diagnosis was real. I was not grieving the loss of a person, but the loss of a perception—my perception of the perfect life. In my mind (and I know I am not alone in this), the “perfect” life was one in which I enjoyed a loving, happy marriage with my husband and with all my family members living relatively normal, healthy lives. My view of perfection did not include years of doctors’ visits and one surgery after another. Until we went to Dallas, something deep inside of me, something I was not completely in touch with, kept holding out hope that for some reason our situation might not be as daunting as it appeared. Beneath the surface of my thoughts and emotions, there was a part of me that believed Mia might be spared some of the difficulties we had heard about. Who could blame me for that?

That long day at ICI forced me to face the new realities of our lives and required me to view the situation as one we would need to manage for years, not one that could be fixed in weeks or months. As the impact of this truth sank in and my denial subsided, I went through subsequent stages of grief until I reached a place of acceptance. This process took a while for me to get through, and I would never want to tell anyone how long it should take because everyone is unique, and every circumstance has its own dynamics.

Anyone who googles “stages of grief” will find lots of information, including Elizabeth Kübler-Ross’s five stages of grief, as well as models that other people have developed—one that encompasses four stages of grief and another that includes seven. The point is not how many stages there are; rather that each person should grieve thoroughly and appropriately in his or her own way, not try to follow a specific program.

Most grief models end with “acceptance,” but my personal journey of processing grief took me beyond acceptance to something even more powerful. I had an epiphany—a principle I knew intellectually suddenly became a deep conviction in my heart. I learned in a whole new way that what we view as perfection is not what God views as perfection. He sees us and our situations much differently than we do. From His perspective, not only was Mia perfect, our family’s life and the plan He had for our future was perfect too.

Mia is extremely practical minded. She calls things as she sees them. The fact that her mouth is not what the world would view as perfect is not news to her, and she speaks openly about it. When Mia was born, her challenges were completely unexpected. I could not have predicted them and would not have wished them for her, but I have learned that the fact that I am not in control is clearly a good thing! I cannot imagine my life without this child, exactly the way she is.

Getting to Know Her

The two-and-a-half months between Mia’s first visit to ICI and her first surgery to repair the cleft in her lip were an amazing gift to me. I quickly realized that having a baby girl was totally different from having boys, and I was thankful for the chance to experience both. I enjoyed seeing glimpses of her personality, playful and strong, and recognizing her likes and dislikes. I loved rocking her, singing to her, and feeding her. Some of my longtime dreams began to come true during that ten-week period—dressing Mia in beautiful clothes with frilly socks, cute shoes, and plenty of pretty hair bows. Those days were special and fun. I knew we had a surgery ahead of us, but I chose not to focus solely on that but to savor each happy day with my baby girl.

Because I was relatively certain that Mia would be my last baby, even 2 a.m. feedings were special to me, something that I did not see as a delight with the boys. I trained each of my children to sleep through the night at a young age—Reed by six weeks, Cole by seven weeks, and Mia at four weeks, thanks to the head start the nurses in the NICU had given her with their rigid schedule. I knew these middle-of-the-night feedings would not last long, and I decided to enjoy them while I had them. Those moments became very special—spending that time with her, just the two of us in the dark and quiet, while I watched and listened to her suck, swallow, and breathe, all while I softly sang songs about how much God loved her.

When Mia came home from the hospital, Reed and Cole were typical boys accustomed to running through the house, having brotherly quarrels, and playing in their rough-and-tumble way. Their behaviors did not change after Mia joined our family; they remained “all boy.” But I noticed that both of them were extremely gentle and tender toward her. When they came home from school every afternoon, they were quick to run to her bassinette and check on her, stroking her tiny hand or speaking softly to her. Those interactions never lasted very long and soon gave way to typical boyish play, but I will always treasure the way Mia’s big brothers felt about her and acted toward her in those early days. I could tell that she really meant a lot to them. They truly loved her, and they still do.

Mia Goes to Church

Jase has always been a little paranoid about germs. I know, that seems odd for someone who hunts and dresses animals for a living. But it’s true. He will not give a second thought to skinning a deer in our driveway or cleaning frogs in our living room, but he is very careful about things like washing his hands after being in public places and shaking hands with people, as well as drinking from public water fountains. I call him a “germaphobe,” and his biggest germ phobias were evident when Mia was an infant. I have to admit that I became germaphobic, too, during those first few months of her life. I did not want anything to delay her lip repair operation.

Jase and I were extremely anxious about taking Mia to church for the first time, not only because of all the germs we knew she would be exposed to from the number of people she would encounter, but also because our church family knew she would look different from other babies. We knew many people were curious about her, and we were nervous about how they would respond to her.

Korie’s sister, Ashley, was one of the first people we saw after we gingerly carried Mia into the church building that day. She relieved my apprehension immediately when she walked up to me, eager to see the baby, and said, “Missy, she is so cute!”

Her comment seems so genuine, I thought. I knew she was sincere, and I was slightly surprised to find that I believed her.

“Thank you,” I said, thinking, Wow. She really meant that.

Some of our fellow church members seemed to know what to say to put me at ease, and Mia’s first Sunday at church turned out to be easier than I expected. Jase and I felt our congregation’s love and support that day, and when it was over we were thankful for compassionate friends who loved us, loved our boys, and now loved Mia unconditionally.

After we took Mia to church, I felt a little better about taking her other places, but I knew that people in the general public were not likely to be nearly as sensitive and kind as the people at our church. When I first started taking Mia out, I often pulled up the canopy on her car seat, so people would not stare at her and ask questions.

When Mia was born, I felt her cleft defined who she was, and I offered an explanation to people before they asked, simply because I didn’t want to wait for the inevitable “What’s wrong with her?” question I was certain would always follow after that first glance. In actuality, this has happened only once in her lifetime.

One day in a grocery store, a man walked up to Mia and me and made quite an effort to see her, almost sticking his head inside her car seat. The inappropriateness of his actions bothered me instantly.

“What’s wrong with her?” he asked.

“She was born with a cleft lip,” I responded curtly.

“What’s that?” he asked.

“It’s when a baby’s lip doesn’t develop as it’s supposed to during pregnancy,” I answered as calmly as possible, upset with his rudeness.

“Huh?” he said.

I tried my best to explain, but I wanted to get us away from his prying eyes and annoying questions.

As I reflected on that incident later that day, I realized that the one scenario I had been trying so hard to avoid had happened. As awkward as it was for me, I decided maybe it had happened for a reason—to force me to deal with a difficult question. Was I really trying to shield Mia from curious people, I wondered? Was I trying to protect her—or was I trying to protect myself?

We’ve Been Robbed!

As the time for Mia’s surgery drew near, one of the events we were most looking forward to was her baby blessing, a time of celebration, prayer, and dedication for new babies and their families in our church. This occasion is also a time when parents receive a charge and make a promise to instill God’s Word in their children. The parents also receive a new Bible for their child—pink for girls and blue for boys. Mia’s baby blessing was scheduled for the Sunday before her first surgery.

Everything seemed normal when I picked up the boys and their cousin, Will, from school the Friday before that special service. We got home and the boys piled out of the car, ran into our house, and started playing. I got Mia out of the car and walked toward the house carrying her in her carrier, along with a couple of bags of groceries. With my hands full, I walked through the door from our carport into our house and kicked it closed behind me. It didn’t close, but bounced back toward me. That’s when I realized that the doorframe was mangled, and the door was bent. I looked at it thinking, Did an animal do that? Then it hit me—someone had broken into our house.

Since it was just a few weeks before Christmas, I quickly glanced at our tree, surrounded by wrapped gifts. All the presents seemed to be there. Could the robber still be in the house? I didn’t want to scare the boys, so I calmly corralled them back into the car and drove next door to Mac’s house, where I quietly told him what I had discovered.

“Call Jase,” Mac instructed me, “and call the police.” He grabbed a gun and said, “I’ll go check things out. “

Soon, Mac returned and told me that he hadn’t found anyone inside. The police came, looked around our house, fingerprinted various surfaces, and ultimately surmised that the perpetrators were probably teenagers.

When we were able to take an inventory of what was missing, we realized only a few things had been stolen—the boys’ Nintendo and all of their Nintendo games, some DVDs, and worst for me, Mia’s extra diaper bag, which I suppose the thieves used to carry their stolen goods. I had a diaper bag I carried with us when Mia and I went out for short periods of time, but I had another one with extra clothes and extra Fixodent for her palatal appliance. We did not lose anything of great monetary value, but we felt invaded, exposed, and vulnerable in ways we had never felt before.

Because we were going to Dallas for Mia’s surgery a few days later, we did not have time to get the door fixed properly. Thankfully, Mac finagled it to a point where it would lock. The funny thing is that the door wasn’t locked in the first place. Jase grew up in a home where the doors were never locked, and he never saw any reason for us to lock ours. “A locked door won’t stop a thief” he reasoned, “so you might as well save your door.” Those teenagers could have turned the handle! Now, since Duck Dynasty came into our lives, all of us Robertsons have learned to lock our doors. Better yet, we have installed high-tech security systems.

The day of the robbery was a day of drama, and it was certainly a time-consuming inconvenience, but all of us were safe. We did not lose anything expensive, irreplaceable, or sentimental. We lost our peace and sense of security temporarily, but we soon got past it and once again looked forward to Mia’s baby blessing, two days away.

A Baby Blessing

Everyone in our family was excited about Mia’s baby blessing the Sunday before we went to Dallas. Jessica, who is a wonderful seamstress, sewed a beautiful gown for Mia to wear that day. It was white with hand smocking on the front and resembled a very expensive christening gown. Mia also wore a bonnet and hand-crocheted booties that had been mine when I was a baby.

In our church, baby blessings precede the regular service. That morning Jase, the boys, Mia, and I stood up front surrounded by all of our family while the elders of our church prayed over us. During the baby blessing, the congregation always sings a song, which we call “the baby blessing song,” a musical prayer asking for blessings on the baby, God’s favor on his or her family, and a great future and godly legacy for the child. As we sing the song, we also watch a slideshow featuring over-the-top adorable photos of the baby and the family. The pictures and the song are a sweet, special, joyous time for everyone there, often accompanied by clapping and laughter.

Our photos were beyond adorable, too, but I was aware that Mia’s slideshow wasn’t typical for our church. While people were very kind and supportive, I knew they noticed that something was clearly different about her face. Unlike the other slideshows we had watched over the years, Jase and I heard no clapping, no happy giggles, no oohs and aahs. In fact, Jase clearly remembers hearing sniffles throughout the audience as the photos appeared on the screen. I did not notice sniffles, but I was aware that the mood in the church was unusually somber.

Although Mia’s baby blessing was not like others, it was still a special time for our family. Even though her photographs were noticeably different from those of other babies, our family and friends still recognized the strength and beauty of this special little girl.

. . . And a Family Blessing

Later on in the service, Alan mentioned Mia’s upcoming surgery as well as the break-in at our house. I could tell that people were furious on our behalf. Part of having a church family is that the people who love you really do rejoice when you rejoice and grieve when you grieve (see Romans 12:15). They also get angry when something unjust happens to you!

After the church service that day, a couple whom Jase and I did not know well approached us and gave us two hundred dollars—an enormous gift, in our minds. “Use it for travel, diapers, food—whatever you need,” they said.

No one had ever done that kind of thing for us before, especially people we hardly knew. Their gift was a lot of money to us, enough to help cover two nights in a hotel, our meals, and our gas back and forth to Dallas. Their generosity covered most of our travel expenses, and we were surprised and grateful to be on the receiving end of such kindness.

But that wasn’t all. Alan had mentioned to the congregation the types of items that had been stolen from us, and by Sunday evening the boys had some new Nintendo games, we had a new stash of movies, and there even was a new diaper bag for Mia. In those days, we did not have extra money to buy things like DVDs. Because of people’s selfless giving, we ended up with more than we had to begin with! I estimate that we had twelve to fifteen movies before the robbery, but we had forty or fifty afterward.

Of all the things we lost, the diaper bag was the biggest loss for me because, as most moms understand, there are so-so diaper bags that do not function as well as they should; there are decent diaper bags; and there are great diaper bags. For me, the one that was stolen was a fabulous diaper bag. I had received it as a gift, and the woman who gave me the original one showed up at my house before we left for Dallas with an exact replacement. I have never forgotten that, and I will always appreciate it.

Our family was not in dire need of anything, that’s for sure. But Jase and I were so touched by people’s support. From the two-hundred-dollar monetary gift to each individual movie, we realized how much we were loved and how eager people were to encourage us and help us. Many of them did not know what to do or say about Mia’s condition, but when they realized they could demonstrate their friendship through something as simple as replacing a stolen DVD, they rushed to do it.

Those expressions of support meant a lot to us, and now whenever I encounter people who want to know how they can help a family with a special-needs child or a child facing an illness, I tell them to do what they can do. If they are not sure what to say or how to support struggling parents, then take them a meal, provide some financial support through a monetary gift or a gift card, or give them a movie. Just do something to let them know you are thinking about them. Gestures that may seem small to the person who offers them can send great big messages of care and support to those who receive them.

A Great-Grandmother’s Gift of Love

En route to Dallas, we decided to make a special stop in Arcadia, Louisiana, to introduce Mia to Jase’s paternal grandmother. By that time, Jase’s grandfather, Pa, had passed away and Granny lived with Phil’s older sister, Judy, in Arcadia. Jase had been particularly close to his grandparents, and since Granny had never seen Mia, this was the perfect opportunity.

Granny was a straightforward, matter-of-fact type of woman. I cannot remember ever seeing her cry or show much emotion, and she certainly was not the kind of great-grandmother who doted on babies, patted them gently, or cooed in their faces when she saw them. I wanted her to see Mia, but I wasn’t expecting what happened when we got there.

A few minutes after we arrived, she asked Jase and me to come into her bedroom with her. As soon as she closed the door behind us, she said, “Do you need any money for this trip?”

I was shocked. Although I had known Granny for sixteen years, this was the most personal encounter I had ever had with her. Jase and I knew her finances were extremely limited, and in a mixture of being stunned by her offer and humbled by her love, we stuttered, “No, ma’am. Thank you very much, but we are fine.”

Even with the two hundred dollars Jase and I had received from the couple at church, medical travel is expensive, and we could have used Granny’s gift either on this trip or toward Mia’s future expenses. But there was no way we were going to take money from Granny. We knew her offer was serious, and that gesture meant so much to us. It showed us how much she really cared about us in a way we had never seen before.

Before we left that day, Granny presented Mia with a special gift that she had made—a warm, beautiful afghan. Mia cuddled up with the soft blanket immediately. She soon started sleeping with it every night and has taken it into every single one of her surgeries thus far. The afghan is now faded and frayed, but Mia still sleeps with this physical reminder of Granny’s love for us and makes sure it is packed for every trip we take.

Loving That Face

After our visit with Granny and Judy, we arrived at Medical City Dallas both nervous about the surgery and ready to put it behind us. As the preoperative processes began, I prayed that Mia would weigh enough to undergo surgery. For the previous two-and-a half months I had worked hard to keep her weight up and had regularly taken her to the pediatrician to be weighed. I knew she would be very close to the required weight. The scale registered 11 pounds, 5 ounces, which was a few ounces shy of where she needed to be. Thankfully, the medical team deemed her weight acceptable. We were given a green light for surgery!

In the pre-op area I noticed a Christmas tree decorated with all kinds of stuffed teddy bears. The bears were in various colors and came with different types of accessories. As I was looking at the tree, a nurse came over and told me that the bears were for patients. “You can pick out one for Mia,” she said. As I searched the tree for the right bear, the nurse reached around to the back of the tree and pulled out a bear with a green-and-cream-checkered bow—it was perfect.

Knowing that someone was thoughtful enough to care about patients and families facing surgery during the holidays meant so much to me. I loved the fact that Mia had a new teddy bear for her big day. Even now, Mia makes a great effort to pick out the right stuffed “friend” to take to the hospital with her.

The day of Mia’s first surgery was not only a big day for her; it was a big day for me too. Handing my three-month-old daughter to the anesthesiologist and watching her walk away with my baby was one of the most heart-wrenching things I have ever done. I knew that Mia was in someone else’s care and that I had absolutely no control over what happened to her until after the procedure. I tried my hardest not to cry, but after the anesthesiologist walked through the secure doors, I broke down in Jase’s arms. He was very emotional about the situation too, but the two of us handled our intense feelings in different ways. I went to join our family in a large foyer area, where about fifteen of them had gathered to support us, and Jase headed outside to a small grove of trees near the parking lot.

As I mentioned earlier, being outdoors makes Jase feel closer to the Creator, who he knows can do mighty things. That grove of trees, which was surrounded by such a large concrete jungle, became a special place for Jase, a place where he said many heartfelt prayers.

The medical team had told us surgery would not begin until an hour or an hour and a half after the anesthesiologist took Mia back and that the procedure itself would last about an hour. They showed us to a small waiting room, one that was windowless and not nearly large enough for our family. When Jase composed himself enough to come back into the hospital, he met me there, but then we decided to leave and visit with our family in another area of the hospital.

We knew when Mia’s surgery started, and we watched the clock as the hour passed. When it got close, Jase and I returned to the small waiting room. A full hour went by, then another fifteen minutes, then another fifteen minutes, and then another. After about an hour and forty-five minutes had passed, someone finally came in and told us the procedure went well.

“Dr. Salyer is very pleased with the operation,” she said. “You can come back to the recovery room and see your baby.”

During Mia’s first visit to the ICI, the doctors had warned us that she would look different after her first surgery. I did not take that warning nearly as seriously as I should have because I thought, That’s the goal, isn’t it—to make her look different?

Actually, the ultimate goal of Mia’s surgeries was to give her the proper foundation for quality breathing, eating, and speaking, but a successful by-product would be her new, forever-changing look. After the procedure, she did look different—very different. The minute I laid eyes on her, I no longer saw the face I had grown accustomed to since she was born. I had to remind myself that a different look was indeed our goal and that with this successful procedure, we had taken a big step in that direction.

Still, Jase and I were not at all prepared for the dramatic changes to Mia’s face. She had railroad-track stitches running bilaterally from the base of her nose to her upper lip, and her entire face was swollen. None of the parents we had met whose children had already undergone the procedure had forewarned us. In fact, one mother later told me, “It’s so shocking I did not know how to warn you. I just couldn’t bring myself to tell you about it.” I was frustrated at the lack of a heads-up on this. Now when Jase and I talk to parents of babies born with a cleft lip or palate, we do our very best to help prepare them for the drastic visual effects of the first surgery.

In the recovery room, Jase was trying to regain his composure, and I was crying, while our baby girl was lying there, looking miserable as she was trying to wake up from the anesthesia. Those moments were so traumatizing and dramatic for me—like nothing we had experienced before or since. I kept thinking about all of our family and friends who were waiting in the hospital foyer, wondering how the surgery went, but neither one of us could bear to face them.

After quite some time, when Jase was finally able to speak, he said, “We screwed up. We should have left her the way she was.”

That was not what I needed to hear.

The sympathetic recovery nurse told us that Mia’s face was swollen due to the procedure itself and that the swelling would go down in a couple of days. You would think that we would have realized that, but it wasn’t sinking in. As much as we were counting the days until her face got “fixed,” we had fallen deeply in love with that little face, cleft and all, and she had become not just our “daughter with a cleft.” She had become our daughter. Period. No labels. No explanations. Just our daughter. And we loved her exactly the way she had been born.

The nurse gave us so much comfort that day. After she spoke with us, Jase and I talked together and concluded that we could not have left Mia the way she was—the procedure was necessary to ensure her quality of life. Jase left to update the family while I held Mia. I was exhausted, and as I looked at Mia’s stitched and swollen little face, I knew we were just starting out on this long and daunting journey—one that must be led by our faith and trust in God’s care for us.