Monthly Archives: May 2014

The Heroic


But truly, women are amazing. Think about it this way: a woman can grow a baby inside her body. Then a woman can deliver the baby through her body. Then, by some miracle, a woman can feed a baby with her body. When you compare that to the male’s contribution to life, it’s kind of embarrassing, really.
-Jim Gaffigan

As long as I’ve known my wife, Amber, her passion has been singing. “Passion” almost doesn’t seem like a strong enough word. It’s been her dream to sing since she was in grade school. She’s followed the rainbow from Ohio to Missouri, Phoenix and back again. She’s invested thousands of dollars and hours into her pursuit. It’s a longing so strong that she prays about it every day…it sometimes even wakes her up at night. Before I ever met my wife, I heard her music…and her dream has never been unreachable. She is AMAZING. So, you can imagine my surprise when, a couple months ago, she came to me one day with a revelation.

“I feel like I should give up my music.”

She explained that she wanted to see change in Cailyn more than anything else, and that her pursuit of singing had occupied a space in her life that she felt led to sacrifice for the love of her daughter. In the weeks since she made this commitment, I’ve seen more positive change in Cailyn than in the prior year…and I’ve seen more joy in Amber.

The word “hero” is thrown around a lot, these days. The term took on a new meaning for me, when I returned home a few days ago. I grabbed the mail, walked into the house and saw Amber patiently working with Cailyn on her tracing. There was food cooking on the stove and Dalton was going wild around her. There were chalk drawings outside, she had cut the lawn, cleaned the house, and the laundry was in the final stages. Just then, I looked over at the bills in my hand and realized that I couldn’t remember the last time I’d written a check. If a “hero” is defined by a person, who gives up their life for another, then I am certain I married one.

She isn’t alone. It takes a hero to commit 31 years out of the prime of her life to selflessly and gracefully raise four strong-willed and often ungrateful children. It takes a hero to battle the day-to-day stress of restaurant ownership, knowing that the demands at home will never allow her to “punch out.” Heroes commit to their children, sometimes working multiple shifts to provide when the father walks out. Heroes decide to keep, love, and protect their unborn child…even when the doctor discovers birth defects. A hero carries their baby with care for nine months, knowing that she’ll have to give it up to someone else, so it can have a better life. It requires a hero to cope with, let alone thrive in, a home with a child who has special needs.

A few days after we took Cailyn home, I called my mom. The conversation went something like this:

“Mom, you did a lot of things wrong with me, but you were just a KID. I only now realize that you had absolutely NO idea what you were doing, but I can see that every decision you made was with my best interest at heart, because you loved me. I guess it’s life’s greatest injustice that we never understand how much our parents love us until we’re out of the house with our own. I can only hope that Cailyn understands these things and makes this same call to me, someday.”

There are millions of strong, capable, and talented women with dreams. So many of them have sacrificed youth, ambition, and personal freedom to guide new life through an unforgiving world…and, quite frankly, to perform feats that leave their husbands in pure awe.

Though their personal passions and dreams never fade, they are surpassed by a love that overwhelms self; A bond that is developed during overnight feedings, wiping butts and runny noses, kissing boo boos, breaking fevers, driving to events, waiting up all night; One that could only be formed by having another human living INSIDE of you for nine months…a love that defies the explanation of man, because it is unique to mothers.

When you compare that to the male’s contribution to life, it’s kind of embarrassing, really.

Happy Mother’s Day!
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A Road Paved with Never


“Based on these test results, Cailyn is extremely delayed…based strictly on what we’ve observed, I can’t say that I would expect her to communicate verbally; certainly not in sentences.”

We quickly learned that the depths and complexities of Cailyn’s capabilities couldn’t be so easily summarized by anyone. Just months after hearing that Cailyn wouldn’t speak to us, her first repeated word (“bubbles”) was triggered as an incentive to play with bubbles. Her second, third, fourth, fifth, etc. all followed within minutes. She could suddenly say ANYTHING and it was as simple as a switch “on.”

This was no anomaly, but the beginning of an emerging pattern: Cailyn was only a single connection away from an exponential jump in progress. One day, while playing with a Christmas gift, we captured another amazing moment on camera as Cailyn spontaneously used a sentence. As she began to place a car sideways to go down a ramp, she realized it wasn’t going to work. She turned it around, made sure she could see the headlights and said “Car goes like this.”

The search was on. If incentives and toys could flip the light on, we were going to try anything and everything to jumpstart another achievement. Unfortunately, Cailyn wasn’t exactly able to communicate the things she loved. We began a painfully long and expensive cycle of trial and error, where we would buy anything if she showed interest. We’d give families gift ideas for birthdays and Christmas, only to get the same response.

“All done.” Cailyn would say, pushing away the item.

While she has made progress using the word “yes,” Cailyn doesn’t understand the abstract concept of “no.” Negatives are actually quite complex. The word “not” makes an entire statement into the opposite. We learned that Cailyn wouldn’t respond when we asked her not to do things, so we had to give her positive reenforcement to perform another task, instead. So, as opposed to asking her not to hit herself, we’d instruct her to put “hands down.” Cailyn can’t even tell us when there is a problem, she only knows solutions. Instead of telling us when she doesn’t feel good, she asks for “medicine.”

Over time, we’ve slowly happened into items and incentives that have led to miraculous gains. Equine therapy sparked her ability to follow multiple-step instructions and resulted in tear-free fine motor gains. Cailyn’s therapists had worked with her fruitlessly on tracing, when we discovered she responded to an iPad tracing game using stars as points. When her teachers used stars, she excelled. Now, we’re using numbered points and she’s connecting the dots. Her love for suckers have even led to her beginning to spontaneously and independently use the restroom.

Progress is rarely overnight. To get Cailyn to ask for things she wants, we started by letting her pick a picture on a set of cards. We moved on to labeling these items in the house, so she’d take us to them. Then we took off the labels. When she learned to repeat words, the labels became vocal. Then we began making her use the name of the item, even when she couldn’t see it. Now, we make her use sentences, ask her to be polite, and are pushing adjectives. It’s a beautiful thing to hear the toilet flush, see Cailyn run in without pants, and then hear her speak…

“Mommy, I want sucker, please. Pink. Yes.”

Cailyn should not talk; She’d never use sentences. She can not go to Kindergarten and could not keep up in a typical class. Cailyn is not fit for a job, can not meet a boy, and will not live independently. These are the things we read, see, and are told every day…even by our subconscious, in dreams. In a moment of vulnerability, I might admit to having believed every one of them.

Cailyn’s journey is littered with impossibilities, riding a road paved with “never.” She’s surpassed each of these expectations; relegating unrealistic milestones to her rear-view. Step-by-step, and sometimes in leaps, Cailyn is defying every one of us and becoming the girl I was afraid we’d never see. She doesn’t know your limitations…

…because Cailyn has never been good with negatives.
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