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23 Behold, children are a heritage from the Lord, the fruit of the womb is a reward.
—PSALM 127:3, NKJV
Every child is a miracle. Jase and I have three of them, one of whom is our daughter, Mia. She is smart, strong, self-confident, happy, and a good friend to everyone she knows. On top of that, she has overcome a lot in her young life, and she is a continual reminder to all of our family that God will never leave us or forsake us. Deuteronomy 31:6 says, “Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”
Jase and I had two boys, Reed and Cole, when I got pregnant again. That became a terrible experience with a tubal pregnancy, and I went through a very scary and dramatic situation when the surgery to remove that pregnancy went wrong, and I ended up losing the entire tube in a second operation. That time in our lives was sad and difficult, to say the least.
Not long after I healed physically from my surgeries, we were overjoyed when we found out I was pregnant again. A phone call from the doctor a few weeks later gave us a harsh reality check when she told me there was a problem with my blood work. To make a complicated situation easy to understand: my blood type is A-negative, and because I did not receive a Rhogam shot after my tubal pregnancy, I would be at risk for another miscarriage if this baby’s blood type were positive. Without Rhogam, my body would see the baby as a foreign object and try to dispose of it until it succeeded.
When I asked what the chances were for this baby to have a negative blood type and not be at risk, I was told that since Jase and I both have negative blood, 99 percent of all our pregnancies would result in a baby with positive blood, but there was always that 1 percent chance I could have a baby with negative blood. Both of my boys are positive and our lost baby had also been positive. The doctor told me our goal for this pregnancy was to make it to twenty-six weeks before taking the baby by cesarean section, because it would have a better chance of surviving outside my body than inside. This sobering news drove Jase and me to pray—a lot, much more than usual—about our baby.
There was no way to test the baby’s blood in utero, so a specialist monitored my condition using markers in the blood work. If they began to go up, I would not be able to carry the baby to term. Miraculously, they did not! Because of that, we concluded that, statistically, our baby was one in one hundred. We have now confirmed that; that baby was our daughter, Mia, and she has negative blood.
With the crisis involving the blood type behind us, Jase and I quickly moved beyond the anxiety it had caused and regained our previous sense of joy about our new baby. Since we had every reason to believe the child was healthy, we could hardly wait to find out whether we were having a boy or a girl. We learned at twenty weeks that she would be a girl, and we were thrilled. We loved having two boys, but we wanted a girl in our family too.
At that time, in 2003, four-dimensional ultrasounds were new, and people in the medical field were very pleased with the quality of the images they provided. So at thirty-one weeks, I scheduled that scan “just for fun,” to see the new baby in a more detailed way. Jase had been present for my other ultrasound, but he was not with me that day. I did have several spectators, though, including Miss Kay, Lisa, Reed, Cole, and Jessica. We were all so excited!
Our excitement soon turned to concern when I asked the tech, “Does her nose look a little bit smushed?”
The look on her face told me she thought something was wrong.
“I need to get the doctor,” she said as she turned to leave the room.
Miss Kay and Jessica took Reed and Cole out of the ultrasound room, and Lisa stayed with me. When the doctor saw the ultrasound, she confirmed what the tech had feared: the baby had a cleft lip. She could not tell how severe the problem was nor whether the palate was involved, but she did tell us clefts are often associated with a variety of other physical problems and syndromes. All she could say was, “We’ll have to wait and see.”
Miss Kay called Jase, and he came to the doctor’s office so we could talk to the doctor together. While waiting on the doctor in the waiting room, Jase put his arm around me and said, “Well, we’ll just have to teach her that beauty is on the inside.” This is definitely not what I wanted to hear at the time. I wanted to hear that it was all a mistake, that we would get a second opinion, that this little girl we had waited on for so long was going to be born perfect. I didn’t know this child yet, but I did know I already loved her. I also knew I didn’t want her to suffer in any way, physically or emotionally, and I knew this condition would cause both.
Needless to say, our families rallied around us for encouragement and support, with a lot of tears. After a few days of grief and disbelief, I went into work mode. I learned all I could about this condition and started trying to find out where we could get her the best medical care. As hard as it was to find out my baby was going to be born with problems, I am very thankful for that 4-D ultrasound technology. Because we knew ahead of time, we had a chance to prepare ourselves and to arrange the care and services we would need for her. I cannot imagine how difficult it would have been had we been faced with trying to do all that and make major decisions for her in the moments and weeks right after delivery.
Knowledgeable people recommended two very good facilities to us, but both were teaching hospitals associated with medical schools. I decided I did not want my child to be a learning opportunity for some future doctor. I wanted the best, most experienced physician in the world. While we looked for that person, we prayed to the Great Physician and asked God to heal her in the womb.
The following Sunday morning, Jase and I shared our situation with our church family so they could pray for us. After the service, a couple approached us and said they had a client whose grandchild was born with a cleft palate. “Could we contact that family for you?” they asked.
“Yes!” we said, so relieved to think we might be able to speak with someone who could help us.
Later that night, I received a phone call from the mother of the child the couple had told us about. After we talked for a few minutes, she said confidently, “We have found the team to handle this problem.” She went on to explain that their son was born with a cleft lip and palate six months earlier. They had researched surgeons who specialize in this area—and they located hundreds. When her husband narrowed the search and began asking which physicians had been published, that field narrowed to only three—one in Los Angeles, one in Pennsylvania, and one in Dallas. They decided to contact the doctor in Dallas, Dr. Kenneth Salyer, the world-renowned craniofacial surgeon who separated a pair of conjoined twins in 2003. They were more than pleased with his team of doctors and were happy to share this information with us. We felt this was an answer to our prayers and that God had led us to this family, who ultimately became a large part of our support system.
At about thirty-four weeks, I communicated with Dr. Salyer’s office and made arrangements for Mia to become his patient. They told us to call them when she was born, and they would see her one week later. Jase and I knew bringing this baby home would be a much different experience than we’d had with Reed and Cole, but we were comforted by the knowledge that Dr. Salyer was the right physician for us and the fact that plans were in place to see him so quickly after Mia’s birth. So we did what all expectant parents do when the time of birth draws near: we waited for her to arrive.
I hoped to have a normal birth with Mia because when each of our boys was born, something was unusual. Reed was ten days late and faceup; he also got stuck in my pelvis during delivery. Cole decided to come three weeks early and was breech, requiring a C-section. I really wanted a nondramatic delivery with Mia!
Mia was due at the end of September, and I went to the doctor on September 11 for a normally scheduled appointment. My blood pressure was very high, so the doctor wanted to do a C-section right away. For various reasons—including the fact that my mom was out of town and I wanted her around for the birth—I asked if we could wait until the next day. The doctor agreed, as long as I promised to stay in bed and not move.
Jase and I headed to the hospital the next morning, and Mia was born later that day. As C-sections go, everything was fairly normal. Did God heal her in the womb? No. We know He could have, but He chose not to. All of the tissue from the top of her mouth to her nose was present; it just looked like someone had cut it with a pair of scissors because it was not fused together. We had wondered whether her palate would be affected or just her lip. Yes, we soon learned, the palate was cleft.
Mia weighed six pounds, nine ounces, so she was not unusually small. But she was born with a condition called wet lungs. Because of that and her cleft, the doctors sent her to the neonatal intensive care unit (NICU). When the specialists examined her there, they found that in spite of the wet lungs, her breathing was normal, and everything else they checked was fine. But once a baby goes into the NICU, that child cannot be released until he or she passes certain thresholds, one of which is volume of formula intake. She needed to be able to drink one ounce of formula in one sitting and keep it down before they would let her go. When she was born, she drank only a few milliliters at a time and had difficulty keeping it down. Getting to one ounce took her six days. We were so happy when she reached that point because we could take her home.
Dr. Salyer was not available as soon as we had hoped to see him because he was doing mission work overseas. Our first visit with him took place when Mia was seventeen days old. Of course, Jase and I both went on that trip to Dallas. My mom and dad, Miss Kay, and my aunt Bonny also went with us. We needed a lot of moral support! That first visit was grueling, and it literally lasted all day. Everything Dr. Salyer and his craniofacial team did had to be done, but much of it was uncomfortable for little Mia and all of it was stressful for Jase and me. By the time all the examinations were complete and all the test results were in, these experts were able to tell us with some confidence that, as far as they could tell at that point, Mia had none of the conditions that often accompany a cleft palate. They told us this was great news. We were so exhausted and so fried, we did not know what to think. We now know that it was indeed the best news we could have hoped for that day.
At that time, we thought Mia’s condition could be “fixed.” The doctors talked to us about a years-long schedule of surgeries. With so many procedures, we assumed, surely they could eventually make her mouth, palate, jaws, and other affected areas just like those of other children. That is not the case. Because Mia was born with her condition, the way her bones grow—or don’t grow—impacts everything else. We have come to realize this condition cannot be “fixed” but will be managed for the rest of her life. We have been on a medical journey with her since before she was born, and we will be on it for years to come.
At the time of this writing, Mia is almost ten years old. She’s an amazing little girl—confident, secure, well liked, and quite sassy and spunky. I could go on and on listing her good qualities. She is a leader among her girl cousins; whenever a group gets together, they want to know if Mia will be there. They love and support her, and she loves and supports them. Mia’s brothers adore her and would take up for her in a split second if anyone ever gave her trouble, and she gets a kick out of hearing them say that to her.
Because of issues with Mia’s bone structure and tissue, she is unable to form words the way most people do. But she taught herself to compensate for what she is missing physically and she speaks very clearly. She is not self-conscious; she interacts with others well and has fun wherever she goes.
People seem to love Mia. We have not had any serious experiences with people being unkind to her. One time, when Mia was about six years old, I heard a little girl ask, “What’s wrong with your lip?”
Mia responded matter-of-factly, “I had surgery. You ever had surgery? It’s really cool. I got ice cream.” And that was the end of it. Her difference is not a deficiency, and that’s because she knows how to handle it and she knows how to deal with other people. She does not let it stop her, slow her down, or keep her from doing anything.
Mia has suffered a lot as she has undergone her surgeries, but she bounces back well from each one. At the time of this writing, she wears headgear. It’s different from what most people think, as it does not wrap around the bottom of her face (like regular headgear for braces). It is specially designed to help align her top jaw with her bottom jaw, because the top one stopped growing due to scar tissue from a previous surgery.
She has to wear the headgear twelve to fourteen hours each day and was told she could not do any physical activity while she wore it. At first, the process of getting it off and on was difficult and painful since her mouth was so sore from the newness of all the attached metal. The doctor told her she did not have to wear it to school but would need to put it on as soon as she got home in order to get in all the hours. The reality of this additional life change for my child brought on a truckload of emotions for me. Since sleep only took care of nine and a half of the required number of hours, she and I both realized she still had at least three to four hours left each day. I was so sad to think she would have to give up riding her scooter, swimming, or jumping on the trampoline with Bella. However, Mia quickly figured out that if she wore the headgear at school, she could resume her normal playtime activities at home. This decision shocked all of her doctors and therapists. They told us that in all their years of practice, they had never had one patient wear it to school because of its visual effect.
Mia is a good patient, but she’s an exceptional kid. We spend many hours sitting in waiting rooms with other families who are going through the same thing we are. We share stories and advice, and we marvel at how these kids cope with their conditions. Jase and I have seen firsthand that all of these kids are exceptional because of the suffering they endure. Romans 5:3–4 says, “But we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.” According to this scripture, character is not something we are born with; it is produced by persevering through suffering. I still pray that Mia will suffer as little as possible in this life, but at the same time I am grateful for what she has gone through. Without her suffering, she would not have the character she has today, the intense love and acceptance she has toward other people, and the enormous generosity that spills from her heart. Because of her character, she gives hope to other families going through similar hardships.
Jase and I are well aware that Mia will have many more challenges in the future. But with the character she has developed, with the faith we have as a family, with our trust that God will never leave us, we are confident she will not only handle them but overcome them and continue to amaze us all.