Monthly Archives: June 2015

Warrior


“I had a dream about Cailyn. She was around ten years old and we were playing and talking just like any mother and daughter. I woke up and I just felt like everything was going to be alright. She’s going to be okay.”

These conversations were typically very one-sided. I’d listen to my wife, Amber, smile and nod my head. Some days, it seemed she was trying to convince me and other times I almost felt she was trying to believe, herself. I’d act and be supportive as best I could but, in the world of Autism, hope is a hobbled antelope amongst lions. I’d learned not to let myself go there. I’d prepared for the worst.

I’m the realist of the family, perhaps as pragmatic as anyone I know. If dreams are for the sleeping, I’d been awoken to the reality of my daughter’s plight the day that we drove home from a consultation with a child psychologist in 2011. I read pamphlets and stories of people who had “conquered” Autism through years of intense therapy. They had resources we could never hope to approach and they bragged of the results; Children, who were mostly self-sufficient but still needed care and frequent check-ins. Until that moment, I was just a naive boy, convinced that I could save my daughter and work our lives back to “typical.” It was then that all hope laid slowly to the ground and succumbed to its inevitable fate.

As grounded as I am, Amber is far more ambitious. In her mind, she can accomplish anything and she won’t hesitate to push for it. With her love for music and vocal talents, Amber knew right away that she was destined to be a singer. She went after it with all her might. We’d talk about her dream to sing and I supported her with everything I had, using what marginal skills I possessed to try and help her put out CDs. Still, as much as I believed in her talent, I knew how unlikely it is for anyone to get just the right breaks to “make it” in the ways she envisioned.

Then she started to get opportunities. She was singing at events and getting to lead regularly at church. She even got an opportunity on the radio and put two songs on iTunes, when she came to me with a startling revelation.

“I think I need to take a break from singing and focus on Cailyn and my family.”

After a while, the hours of working with Cailyn and an increase in self-injurious behavior began to weigh her down. Amber needed an outlet and she found it through exercise. She was already in shape and did a lot of cardio, but she wanted to really get her frustration and energy out. I bought her a heavy bag and she started going to the gym. After a particularly rough session of therapy, it wasn’t uncommon to hear her beating the life out of that bag, her face dripping with both sweat and tears. This was a necessary outlet for frustration and gave her the opportunity to socialize in ways that having a child with Autism can restrict. This activity led to shifts in our interests. One day, we were watching “American Ninja Warrior” when Amber turned to me and started dreaming again.

“I think I can do that. I want to train to be on American Ninja Warrior.” She said, with that familiar sparkle in her eyes.

At this time, Amber couldn’t do a full, strict pull-up. She was fit, but not strong by any means. I just smiled and nodded. I’d do anything I could to support her but I didn’t REALLY consider it being a reality. There is just too many people, who have been committed for years. She didn’t have a chance.

If my hope had died when Cailyn was two, its grave was trampled near the end of 2014. Cailyn’s violence and tantrums had hit a new level. During the subsequent months, she would get down on all fours and bang her head against the floor. She began to regress and was peeing herself frequently. She started to wake up in the middle of the night, again, and her school was even looking for suggestions to help with the behavior. I felt that everything was going backwards and that life had begun to spin out of control. Amber and I were both at our end, when she told me about that most recent dream she had of Cailyn. I smiled and nodded as she talked but I had a much more frank conversation with my dad, who called that evening.

“Son, I just wish there were something I could do to make this all go away.” he said, his voice  unfamiliarly helpless.

“It won’t go away. This is permanent. This is my life for as long as I’m on this Earth…and my only prayer left is that God will have mercy and take me soon.” 

I was finished.

The day after Amber’s dream, Cailyn had a good day. It was followed by another. She strung several together and started sleeping better than she had ever before. Then she started asking for things more calmly and reacting with less violence. The accidents stopped and then came the shocker; She started spontaneously stringing together words. We listened in wonder, as she started using verbs and adjectives with her nouns. She was describing things appropriately and began using “Mommy” and “Daddy” correctly, to ask for us.

I found myself falling in love with my daughter all over again and felt a frightening spark of hope return.

I did Amber’s American Ninja Warrior submission video. As I looked through the video clips, I couldn’t help but watch the hours of therapy sessions that Amber put in and painstakingly documented. Each challenge had passed and Cailyn had conquered with her warrior mother at her side. This inspired me to do all I could to make Amber’s dream become a reality…but it was a long shot. She had a ton of talent but was far from unique in that regard. In the coming months, I tried to subtly prepare her for not getting chosen. 

Then, during Dalton’s birthday party, I received a call.
“Hi, Craig. This is American Ninja Warrior. I need you to be very calm and try not react, but Amber has been chosen to be on the show and we want you in on the surprise.”

Cailyn’s best days have come in the sunrise since our most recent war with Autism. As we prepared for the show, Amber asked for a new shirt. Immediately, “Cailyn Can” came to me. I designed it specifically for her run, to give testimony to the future, inspire her to push, and to use this impossibility as a proxy to speak life into a defeated father.

In the moments before her run, Amber needed that inspiration. As we witnessed strong contestants go down early, she was shaken. 

“I don’t think I can get past, she said. I would be happy if I could just make the snake.” She said, eyes wide with fear and hand shaking.

“You’ve got this. Trust your training, hold on and don’t leave anything out there. Hold on for Cailyn.” I said, as I pulled her head to me and kissed her forehead.

I wasn’t just nodding and smiling. I believed it.

With each of the first five steps, my breath stopped and, as she clung to the log, I could barely watch. Just coming to her feet on the second platform, completely dry, was an accomplishment. Still, staring her in the face was the demise of many other ninjas…the snake.

As she took the first careful steps, all who knew her could see the nervousness in her body language. She made it carefully through the first three quarters when everything shifted and she began to lose control. I remember a feeling of disbelief…it felt like it shouldn’t be over. Then, as if propelled back up, Amber shifted her weight, stopped her momentum at the last possible instant, crossed legs, regained balance and hopped to the next platform.

Her next and final obstacle would prove to teach a lesson in fear and regret, which she’ll take with her into future training and apply to our true battles. Still, our pride was undeniable. What she had done was impossible just two years earlier…but it was only the outward evidence of a determination that has kept us afloat.

Amber was a warrior, long before she could ever do a pull up. She held her daughter and family up when lesser dreamers would fall. The emotional revelation of this new world was wrapped in the irony that, on this massive stage, the cynic had become the believer and Cailyn was the one holding up her mother.