Monthly Archives: March 2012

Flawed with Intention

I pulled my car into the campground, pulled out my bags, and began the trek to the dorm. I was now a working man and had missed previous day, so the grounds were already buzzing with people talking and playing. In the distance, I spotted a few friends and raised my arm to make sure they saw me. They began running in my direction. As they approached, it became clear that they wanted to tell me something.

“Did you hear about Ryan?”

My friend, Ryan was a rather large guy. I’m guessing about 6’6″ and probably about 235 pounds at the time. The previous night, he had been playing in a classic camp pick-up basketball game when he came down hard and rolled his ankle. Apparently, he was in massive amounts of pain and, as the swelling got worse, they decided to have someone go get a vehicle (he couldn’t walk) and drive him to the hospital.

As he laid on the bench in agony, our pastor’s son walked up to him and decided to fix the situation. He stretched his arm out to Ryan’s leg and prayed, in classic child-like fashion.

“God, make him all better…and give him some grape kool-aid.”

Although these details weren’t shared, I imagine the reaction from the group huddled around was a mixture of laughs and adoration. Everyone was probably wrapped up in that cute thing that they just saw, until something amazing happened. Ryan spoke.

“Guys…It doesn’t hurt, anymore.”

Ryan, being the practical joker that he is, would use any moment as an opportunity to get a laugh so everyone was naturally skeptical. Until, that is, he began to put weight on his foot. He stood up, walked around, and even jumped a few times before trying to restart the basketball game. Unfortunately, he couldn’t get his shoe back on over the swelling. Cooler heads prevailed, convincing him to go to the hospital, where they went through a series of tests and came out with the x-ray.

“Have you had any other problems like this, since the fracture?” the doctor asked?

Ryan looked at him, completely confused.

“I’ve never hurt this ankle, before.” he replied.

The doctor wasn’t exactly buying his story.

“That isn’t possible. I see evidence of an old fracture here. It had to have happened a while ago, because it’s healed over.”

The next day at lunch, the mess hall served grape kool-aid.

I continued going about my business as I listened to this story. I was mostly engaged, and although half sure that it was exaggerated, I was reasonably entertained. Just then, we arrived at the basketball court. I spotted a six and a half foot figure winning yet another unfair rebound battle over a smaller opponent and putting the ball back up and in. As he walked back, I noticed one foot had a sandal and sock on it instead of a tennis shoe. He caught sight of me and came jogging my way.

“Hey buddy!” Ryan called out “Did you hear the story? You’ve got to see this!”

He sat with one leg up on the bench and took off the sandal. As he began to unroll the sock, I cringed. It was horrifying. His ankle was swollen beyond recognition. I had never seen such a dark shade of purple occur naturally. Hearing about it was one thing, but the story was told when I saw him roll back up the sock and go back out to playing basketball.

Although years had gone by and the event was filed away in distant memory, the first time I heard the word “Autism” in the same sentence with my daughter’s name, I thought of Ryan’s ankle. The story kept recurring in my mind and Amber probably got tired of hearing it. For the longest time, I couldn’t make the parallel between this event and Cailyn’s struggle. Then it clicked.

It was the day Cailyn began to repeat things we said. She started saying all these words, which had seemingly come from nowhere. We were so happy, thinking we’d turned a corner. Still, I something bothered me. She couldn’t talk unless she waived her right hand up next to her face. Known as “Stemming,” this is one of a variety of repeated actions that many individuals with Autism perform to get stimulation or to concentrate on a task. In this achievement, just like every other in Cailyn’s journey, each ground-breaking success was met with another reminder that she still had a long way to go.

That is when I realized that Cailyn’s story may not involve Autism dissolving in a cloud of dust behind us. Although I would love to someday tell an entertaining tale about a girl, once diagnosed with severe Autism and then instantly completely “typical,” I’m not sure that’s our mission. I’ve reached a place of understanding, where the definition of “healed” has evolved beyond complete relief from symptoms, instead describing a process of unexplainable and supernatural conquest over them.

We are all made with scars; flawed with intention that when we succeed beyond our own capacity, our lives may have impact. The story of Ryan’s ankle would have only affected witnesses if not for the disgusting swelling and bruise. Now, it’s become a source of faith and hope for everyone who encountered him in the following weeks. Likewise, I believe Cailyn will continue to confound and amaze. She will excel in spite of her affliction but have lasting impact because of it.

Everyone has a story about their slow to talk, now completely normal relative who simply “grew out of it.” My little girl seems destined for a more powerful road and I’m okay with that.


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The Anatomy of Fear

The second day of Cailyn’s life would come to shape the next few months of mine. The nurse had come in to take some of Amber’s vitals and I was finishing up changing one of my first diapers. I finished, pulled Cailyn up to my chest and laid her head on my shoulder. Suddenly, her whole body went rigid, she threw her head back, and opened her mouth wide. I expected a cry but heard nothing.

“She’s choking!” I yelled to the nurse. “Help!”

The nurse casually walked over and explained how sometimes new babies get mucus caught in their throat. She started to demonstrate the process of clearing out a babies throat, when she raised her eyes with a very uneasy look.

“Hit the red emergency button.”

I was too shaken to find the right button, I was pressing everything in sight. I was in my socks and slipping all over the floor, running back and forth trying to process what was happening. I slid out of the room, into the lobby and just yelled as loud as I could.

“Someone please help! My daughter isn’t breathing!”

I came back in with a few nurses closely behind. They worked on Cailyn and I watched Amber, who sat there in stunned silence. She was obviously scared out of her mind, but bed-ridden and powerless to help. Finally, they cleared Cailyn’s throat, but her lips had begun to turn blue. They gave her oxygen and assured us that she was okay. Amber and I were emotionally drained, relieved, but simultaneously very fearful. My next question was simple.

“Could this happen again?”

Life as a well-employed bachelor was easy. I remember playing video games for a few hours on end after work, driving the “long way” with my windows down on cool summer nights, pulling through Taco Bell for dinner, and getting back to the apartment just in time to watch a baseball game or movie. In those days, I’d get a call from some friends wanting to hang out and I’d be up for it…immediately. I drove fast, I played hard, I ate poorly, I thought I controlled everything, and I feared nothing.

Anyone with kids can write the next paragraph. Children change everything. Cailyn’s bassinet didn’t leave our bedside for the first few months. Every time she made a noise, we jumped up to check on her. When she finally went to her own room, we put the baby monitor as close to her face as possible and jacked up the volume. We were almost caricatures of ourselves; A new breed of hyper-paranoid, obsessive compulsive, anxiety overridden parents on steroids. For months, we worried about everything from her appetite to her sleeping position and the consistency of her poop.

The anxiety doesn’t stop after infancy. We live in a sick world. One where you have to keep your child next to you in all public places. You begin to drill scenarios into their head by teaching them not to talk to strangers and to always look both ways before crossing the street. That evolves into discussions about friends and bullies, cars, dances, dating, college, money, etc. This continues, even when your children are grown and restart this cycle with a child of their own.

My fears underwent reconstruction with Cailyn’s diagnosis. She didn’t understand the concept of a stranger and, at the time, couldn’t cry for help even if she did. In the news, we were beginning to see stories of teachers joining with bullies in abuse of children with Autism. We began living with the reality that Cailyn may live her entire life with a different aptitude for the world around her. I resigned myself to this possibility and decided to dedicate myself to taking care of her and making her life as happy as possible. That’s when the real fear rose up in my mind. Someday, I would die. Cailyn would be without me. She may not have anyone to protect her, provide for her, love her, or understand just how awesome and beautiful she is. This became my biggest fear and the subject of many of my prayers.

Just a few weeks ago, my dad informed me of a special “healing” service his church was having. He said that everyone was fasting (giving up) something they loved and using that time to pray for an individual, in whom they wanted to see a miracle. I’m naturally a skeptic about all things “miracle.” It’s just my logical, scientific, cautious nature. In many ways, I believe this to be a defense mechanism to prevent myself from being let down. To supplement this ever present doubt, I decided I needed to completely dedicate myself to this endeavor. That made my fasting choices easy: I decided on soda, salt, and bacon. Anyone who knows me, understands the level of sacrifice involved.

During the first week of the fast, I discovered that I had “Stage 1” high blood pressure. With my family history and sedentary, yet often stressful job, blood pressure issues at thirty years old is a potentially huge early warning sign. Coincidentally, I’d already pledged to give up the things in my diet that most contributed to my health issues. It was interesting that I never had the discipline to eat right on my own but, since this was something I had promised to do for Cailyn, I held firm. It was a step I couldn’t have taken of my own volition, but required a greater purpose. Slowly, my blood pressure fell and is approaching “high-normal” levels. It seemed as though the healing had already begun…and it wasn’t all physical.

We instinctively fret the unknown, different, and uncontrollable. However ridiculous or improbable the anxiety might be, it doesn’t become less real. The anatomy of fear is such that it is completely confined to our mind and should be at our mercy, yet it imprisons us. There are times that we need reassurance that we don’t fight these battles by the strength of our own hands. Whether it be with the fear of my own mortality or of Cailyn never being “healed,” I’ve learned it best to plan for the future, live in the now, and leave my anxiety in bigger hands. This week I was blessed enough to receive a subtle reminder that the ravens are still being fed and life is so much more uncertain when left to my comprehension and control.


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Statistical Impossibilities

I remember sitting at the mall and watching the kids play with each other. They ran in Cailyn’s area a few times and appeared to be around the same age as her. They chased each other around the slide and over to the miniature house. I saw them peeking out the windows at each other and laughing. Cailyn walked over to the bead maze and pulled at the wiring. It made an annoying metallic rattling sound, which she apparently found amusing. I was done.

“Come on, Cailyn. We’re done playing, now.” I said, walking towards her with my hand outstretched. She grabbed it and followed me, as usual, without a word. On the way out, we saw young kids everywhere. To the left, a little girl asking her mom for a cookie. On the right, a young boy sitting patiently on a bench and talking with his dad. As I put Cailyn into the car, a family just down the row was walking in. The father was holding his crying little girl and he promised if she was good, he’d get her something. She smiled back at him.

We use benchmarks everywhere in life, often without intent and sometimes without knowledge. We define ourselves using comparisons to others and can’t help but feel validated when our number rises over the 50th percentile. We live in a world of hierarchies, salary scales, grade point averages, conference standings, friend counts, and SAT scores. With time and immersion into this culture, our self-worth becomes defined less by our individual achievements and more by how that compares to our peers. We begin to subconsciously (and often erroneously) define “normal,” only to be disappointed when we don’t attain that standard. This fictional, sometimes faceless enemy manifests itself in many ways, driving fathers to overwork, pushing young women to eating disorders, and generally resulting in levels of depression.

Comparing Cailyn to other children began with the purest of intentions. I wanted to track her milestones so that I could make sure she was on track to be successful. Once she started to fall behind, I began that slow spiral downward. It started with a healthy concern for her, but slid to jealousy, resentment, and anger. These emotions welled up to varying degrees whenever I saw children interacting “normally” with their families. I remember being so ashamed of having these emotions. I love my daughter far more than life, itself, and I’d never trade her for anything. Still, I couldn’t stop the feelings from creeping in. The only way to contain them was to withdraw completely.

I anticipated that comparisons would fade away in the world of Autism, but I found the classifications still existed. The Autism “Spectrum,” includes not only severe cases, such as Cailyn, but also moderate and high-functioning individuals. It even includes children, who are not even classified as having “Autism.” Others have almost unnoticeable symptoms. When Cailyn received her diagnosis, one of the first things I did was look up other children with that diagnosis, to try to establish a baseline for what we should expect for her progress.

When you talk to other parents dealing with Autism, the subject of diagnosis always comes up. We obviously want to know severity, symptoms, and treatments. Secretly, I always wanted to hear that Cailyn didn’t belong there. It seems sick, now, but there was a time where I’d observe other Autistic children and look for ways that Cailyn was ahead. I think I was reaching for a small ray of hope that she wasn’t as severe as the doctor said, or even that she was breaking free of the condition. With older children, it was also a good way to see what we could expect for the future. I was already setting standards for her, years in advance.

Eventually, I had a personal breakthrough. I began looking more closely and soon realized that, without exception, there are no perfect comparisons of children with Autism. For that matter, there are no perfect comparisons between any two children. This has never been more evident than with Cailyn and Dalton who, although they come from the same parents, could not be more opposite. Yet, in spite of these differences, each has my complete and equal love and pride.

Even with the exact same parents, a new baby has approximately a one in four trillion chance of being born with a identical significant genetic makeup. That’s excluding an infinitesimal number of potential genetic mutations. The beauty of this complete uniqueness is that it gives us an opportunity to operate independently of expectations set by others. It allows us to pursue success, defined by pride in our own achievements and not solely on a comparison to others. It breaks Cailyn free of the fate of other children, who just happen to have shared similar symptoms. It also provides me with an escape from my preconceptions of what my child would be, focusing instead on who she is.

Although man searches for structure, consistency, and control, God shines through in helplessness and chaos. If not for Cailyn, who is just one of the Earth’s seven billion statistical impossibilities, I may have missed the point. She is extraordinary as a result of her traits and not in spite of them. Her future is exciting due to the fact that it’s yet to be written. Most importantly, the true beauty of a relationship is diminished amidst the gray canvas of the “typical.” The bond that Cailyn and I share is significant because it is completely and erratically unique.


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The Theology of Doubt

I just sat there, speechless. In the first several months following Cailyn’s diagnosis, this was a feeling that was still new to me. Amber came over, placed her hand on my shoulder, and looked at the computer screen. There, she would see a projection of our monthly budget. For the first time, the big number at the bottom was in the red. Deeply in the red. I watched her reaction. It was one of surprise and fatigue. Her eyes finally fell from the screen, down to mine.

“What do we do, now?” She asked.

Over the course of the prior few months, we’d had several financially “uncomfortable” moments. There was the $7,000 genetic testing bill that our insurance initially rejected. There were numerous trips to Pediatricians, Autism specialists, Child Psychologists, Geneticists, and Neurologists. None of these were cheap. I just thanked God that I had a job that allowed me to cover it. We were still quite comfortable.

After Dalton, the expenses for another child kicked in. Right around that same time, we decided to fully devote ourselves to all natural cleaning supplies, we went organic whenever possible, and switched Cailyn to a completely gluten free diet. On top of that, we began giving Cailyn a cocktail of expensive vitamins and natural supplements prescribed by our DAN (Defeat Autism Now) Pediatrician to help with her development. Now, we were realizing that Amber could no longer continue her therapy sessions with Cailyn. We would have to start Occupational Therapy services, Speech Therapy Services, and ABA (Applied Behavior Analysis) therapy to supplement.

ABA services weren’t covered by our insurance and would be $30/hr at a local preschool, which specialized in Autism Spectrum Disorders. We had experience with the staff and had checked out the school. It was perfect for her. The only problem was cost. We’d have to send her for at least ten hours a week, for it to have an impact (Note: Do the math). When Cailyn turned three years old, we’d likely be able to send her there for free….but that was over a half a year away. We plugged the numbers into our budget spreadsheet and it wasn’t pretty. To provide her with these services, we’d have to operate at a significant monthly loss for the better part of a year.

Being the pragmatic individual that I am, I’ve always doubted whether Cailyn would lead a high functioning life. I found that doubt was easy to dismiss, as long as we had the financial wherewithal to invest in Cailyn. The moment we knew that her therapy would begin to drain our savings account, we began to question if they were worth it. Maybe, we thought, we could just wait until she turned three years old and then get these services for free? We started looking up alternatives, including options for Social Security disability benefits and family resource services. We didn’t qualify for any.

In life, you don’t know what you truly believe until you’re held over the flame. As a result of my experiences, I’ve developed what I term my “theology of doubt.” This is just a personal set of beliefs that have helped me reconcile my faith, with the cynical and logical mind God gave me. I grew up assuming that faith and belief are one and the same. I was ashamed that I sometimes lacked belief, because that meant I must also lack faith. I’ve since concluded that this logic is completely inaccurate. In my mind, faith is action in the presence of doubt. The measure of faith is greater when the action is of greater consequence or, actions being equal, when there is greater doubt.

To demonstrate this point, I consider a simplistic scenario of a child jumping from a ledge to their father. All else being equal, it takes considerably more faith to jump down from twenty feet, than from five. Likewise, it requires more faith to jump the first time, than on subsequent tries. As time goes on, the doubt fades away and is replaced with belief.

Amber and I couldn’t help but doubt. Still, we went forward in faith. We didn’t cut a single Autism-related expense. Month after month, we saw our savings dwindle. By December, Amber and I gladly agreed to forgo anniversary and Christmas gifts to each other. You see, the Cailyn that we first enrolled in these services couldn’t talk or tell us what she wanted. She intentionally avoided others and had frequent violent outbursts. In the months afterward, she was speaking and asking for things. She was voluntarily going to family members on request, was no longer biting herself, and was even riding a tricycle.

Cailyn is now three and covered by an IEP and an Autism Scholarship. She’s still going to the Center for Autism and Dyslexia, but for more hours at a time…and at no expense to us. I sometimes wonder how her life would be different, had we decided to give into our doubts and fear. I firmly believe we would have missed a key developmental opportunity in her life.

Although the trial of our budget has ended, I remain in a constant conflict. I’m too logical to never question, too inquisitive to never doubt. My faith is greater because I’m compelled to action in spite of my reservations. I may not believe Cailyn will be whole until the day I have this very conversation with her, but I will always give EVERYTHING to get there. In this way, my faith persists.

After all, in my theology, a miracle is where faith meets the impossible.


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