We named her Faith because we knew she would need faith in her life.

FAith is her middle name

By David Amburgey

Three o’clock approached quickly, and I began to wonder if I would make it home in time. I drummed my fingers on the steering wheel impatiently. Stupid road construction! The delays made the return trip from Savannah unbearably slow. I had pushed the lengthy of my hospital visits too far. Frustration grew as long minutes ticked away. I felt foolish for putting myself into such a predicament.

Fear began to twist my stomach into cold knots as I realized I wouldn’t make it home to meet my daughter’s bus. Frantic thoughts raced through my head. Who would get her? What would they do with her? Would she go ballistic when I wasn’t there to help her off of the bus, give her medicine, make her a snack, and turn on Popeye? I could picture the abandoned, lonely look on her face. I just couldn’t do that to her, yet it was happening. Gripping the wheel, I stared grimly at the traffic in front of me…

Allow me to introduce you to my daughter, Amanda Faith Amburgey, age 14. Amanda has been diagnosed with severe/profound Autism. She is non-verbal and developmentally delayed. In other words, when it comes to Autism, she is about a bad as it gets. As a result, our lives are filled with constant drama. Unlike most people, who crave excitement, we long for a dull, boring, ho-hum day.

Severe autism means that Amanda cannot speak and is unable to express herself, her needs, desires, and frustrations. Although she does know several signs, or at least her own version of American Sign Language, many times she simply moans and points. If you don’t know “her version” of sign language, she cannot communicate. This frustrates her deeply, often resulting in a tantrum—not that she needs a reason.

Tantrusm have become an everyday part of life. They are often triggered by the simple mention of the word no—a concept any child with autism, especially our child, has difficulty comprehending. Amanda wants what she wants, and she wants it instantly. Idle time is torture for children with autism. Boredom is their biggest nemesis and patience is another concept they simply cannot grasp. Amanda may know the word wait, but the concept eludes her.

During her tantrums, Amanda often destroys things. For example, we have removed most of the blinds in the common areas of our home because we simply grew tired of replacing them. Barely 90 pounds, she is stronger than she looks. When she pulls, kicks, hits, and thrashes it is difficult to contain her. She hits walls, tables, or anything else within reach, including herself. If it can be thrown, she has thrown it. If it can be broken, she has broken it.

If she has nothing to do, she quickly finds something, anything to fill the void. Her favorite activity is tearing pages from a magazine (pictured above). When she finishes ripping it apart, she tears the pages into smaller pieces until she has nothing left but tiny fragments. While this sounds harmless, it quickly grows wearisome when you constantly clean up mounds of shredded paper and rarely get a chance to read an undamaged magazine. But as messes go, it could be worse!

Amanda is also bi-polar. Her mood can change in an instant, for no apparent reason. When these changes come, we simply endure them. There is no remedy.

I would love to hear my little girl say, “Good morning, Daddy,” “Good night,” or “Daddy, I love you.” It would fill my soul with joy to see her enjoy a day like most young girls her age. I would gladly be a nervous wreck waiting for her to return home from her first date. I dream about walking her down the aisle with my heart pounding rapidly as I give her away.

I would do anything in my power to give Amanda a “normal” life, but that was not God’s plan for us…and I am okay with that. You see, my wife and I know that our child always has been and always will be in God’s mighty and loving hands. Her journey through life will be difficult, but at the end of that journey she will be freed from her human prison. You and I face a life-long struggle against the forces of sin and darkness, clinging desperately to our hope in Christ as Savior. In contrast, Amanda has a free pass. She will never understand this sinful plight. Her battles are physical, and she will experience the dreadful weight of sin that separates us from God.

At times, Amanda stares off into space, laughing at nothing. I can’t help but wonder if God is speaking to her in those moments—simple communication between a child and the only One who understands her perfectly. Don’t pity Amanda. She is one of God’s children.

Her middle name is Faith. We named her that because we knew she would need faith in her life. This realization came during the pre-natal struggle for life, long before her diagnosis of autism at age four. My wife’s water broke 23 weeks into pregnancy. Doctors kept her in the hospital for two weeks, pumping a regimen of fluids and medication into her to keep her from going into labor.

They gave Amanda a fighting chance at survival. Eventually, the umbilical cord became prolapsed, and the doctors performed an emergency C-section to save the baby. At 25 weeks, the likelihood of survival was very slim. Her lungs were underdeveloped, and doctors warned us that she would probably suffocate at birth. To their shock, she took a deep breath and kept on breathing—a miracle!

She fought for life for three months in an incubator before we brought home a healthy, beautiful little girl, perfect in our eyes. We could not have predicted the challenge that lay before us.

Yet in spite of her physical challenges, Amanda has a purpose in life like every other child of God. You catch a glimpse of that purpose in the picture that accompanies this article. In contrast to her frequent anguish, Amanda sometimes has moments of absolute joy. And when a child who suffers finds joy, it is magnified. Everyone around her shares her joy. We laugh with her and smile with her. It is those moments that make the day worth living. Sometimes her laughter is a bit misplaced—like when a person trips and falls—but it is still laughter, and the angels could not sing a sweeter song.

So much more could be said of Amanda and her life, but I can’t seem to find the words. God himself would have to write what I feel in my heart. I fall far short of the talents required to undertake such a task. How could anyone describe the wonderfully heartbreaking yet infinitely rewarding task of raising such a child as Amanda.

Often, I try to imagine what it will be like on the day God calls Amanda home. She will enter the presence of the Lord because her name is written down in the Lamb’s Book of Life. I like to imagine that after she sees Jesus, she will come running to me with open arms to say, “Good morning, Daddy. I love you.” Until then, I live in hope of that day. After all, her middle name is Faith.

About the Writer: David Amburgey pastors Baxley FWB Church, Baxley, GA.