Everyday Superheroes

 
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Poor June Cleaver, the mom on Leave It to Beaver; she’s been mocked for years. But when I watched a rerun recently, I noticed she had spunk. Efficient and beautiful, she was the epitome of the perfect stay-at-home mom, but she was no doormat. I, on the other hand, have never donned pearls while cooking or worn a dress to a parent-teacher meeting. And I never thought I’d be a stay-at-home mom. With my journalism degree, I was going to be the next Barbara Walters. Ninety-five percent of my girlfriends got married before I did, and many of them stayed home with their small children. But I was going to be the long-term career woman of the group.

They’re letting their brains turn to mush, wasting the intelligence that the good Lord gave them, I often thought, regarding my homebound friends. Their college degrees were in vain.

Then, it was my turn to get married. Three and a half years after “I do,” Flash and I were ready to have a baby. We agreed to my staying home to care for little Alpine, a nickname my friend Tress gave Cowboy before he was born. At the time, I’d been working as a technical editor for almost 10 years. Being an older mother-to-be, I told Flash, “I didn’t wait this long to have a baby, just to spend every day away from him.”

Since Flash and I made the same amount of money at the time, my quitting work would mean cutting our income in half. Financially, it would be a huge leap of faith, or insanity. My stepkids, Mario and Zelda, plus the new baby would make us a family of five. How can we possibly live on half the income we’re used to? I wondered. During my pregnancy, I spent countless hours trying to figure out how we could survive with less. Cutting out tuition for after-school care for Mario and Zelda would help considerably, but not enough. I continued to crunch numbers. I prayed. I exhausted my brain, trying to find categories in our budget that could be slimmed down or eliminated.

Finally, I called a professional. Financial advisors are God’s gift to me; I thought a hedge fund was money used to pay the lawn guy every week. I went over every stitch of our budget with a financial planner, Mr. Solomon. During one of our phone conversations, he said, “I want you to be able to stay home with your baby as much as you want to. Go back over your budget, and see if you’re missing something. Think outside the box.”

“But I’ve done that, and I can’t find any extra fat to trim,” I responded.

It was quiet on the other end of the phone. I was holding my breath, hoping he’d rescue me with his financial wizardry.

Finally, he spoke. “Often, people live so much for the future, they miss out on the present.”

I wondered what he meant. He wants me to figure this out for myself, I thought. He’s not going to tell me what to do. Suddenly, the answer was clear; there was one category I’d never considered altering. “You’re talking about our retirement savings?” I asked the Wise Man.

“Just take a look at it,” he replied. “If you decide to decrease your contributions, you can always increase them later.”

I had a glimmer of hope, and couldn’t wait to crunch numbers yet again. After reviewing our budget that night, I was walking on air. It would be tight, but we could make it by lowering our contributions to our retirement funds. People will think we’re foolish, I told myself. Then I thought of the people I admired for their crazy adventures in faith; soon we’d be joining their club.

Several weeks after Cowboy was born, I told my supervisor, Sunny, that I wouldn’t be back to work. She didn’t think I was crazy. With a smile as wide as Texas, she said, “I knew you wouldn’t be back. You’ll never regret it.”

As I adjusted to mothering a newborn, I daydreamed about having coffee with other moms, like the women of Mayberry do on The Andy Griffith Show. But many of my girlfriends, who’d previously been stay-at-home moms, went back to work or returned to college after their kids started public school. The few who were still at home with their children were too busy to sit around drinking Folgers for hours. I thought of a million community activities I could get involved with. But, as Cowboy grew, being a mommy became more demanding. I had no time to plan parades, run for city council, host parties, or join a garden club. Obviously, I’d been wrong about stay-at-home moms; the job is not for the faint of heart. Those Mayberry women must secretly have nannies, or are drinking coffee with 15 extra shots of espresso in each cup.

Then, autism entered Cowboy’s world when he was about 17 months old; it forever changed our family, and my motherly duties multiplied a hundredfold. Suddenly, I had the job of four moms, and wished cloning had been perfected. My primary duty was to learn as much as possible about how to help Cowboy. My secondary duty was to interact with our medical insurance provider, advocating for them to cover Cowboy’s various therapies.

“You’re a pit bull,” Flash would say when he heard me on the phone with insurance representatives.

“I thought you said I was diplomatic.”

“You are,” he answered. “A diplomatic pit bull. You have a way of getting them to do their jobs.”

What Flash didn’t hear was the many prayers I said before picking up the phone to call them, a habit I still cling to today. God opens doors wider than my words ever will. In addition to advocating for Cowboy, I still had my other tasks, including paying bills, doing our budget, planning what little social life we had, cleaning house once or twice a year, grocery shopping, taking Cowboy to therapies, surviving each day, occasionally feeding the family, and so on.

When Cowboy was almost two years old, I met a handful of parents whose children were in an evaluation and intervention program with us at Texas Children’s Hospital; they became dear friends with whom I still have contact. We were a strong support to each other in the earliest days of getting help for our children. But after Cowboy’s official autism diagnosis when he was 2 years and 8 months, a second wave of emotional chaos ensued, and I was referred to the Autism Society of America. They offered meetings in the Houston area, so I picked a location. When I walked into my first meeting, I saw a room packed with parents of special needs children; my tribe multiplied that night.

I was nervous. But with each introduction, I found kindness in each person’s eyes – a knowing that transcended conversation. They saw my hurting soul, and reached out with the balm of friendship and understanding. I, and later Flash, found refuge in those parents who had been in the game longer than we had; they’re some of the most brilliant minds we’ve ever known.

“It will get better,” those parents of older kids often told me.

I didn’t believe them. I knew it was true for them, but didn’t think it would happen for us. I was convinced that life would never change, and would always be dark. But those pioneer parents, who blazed the trail before I started the journey, kept on believing and encouraging. Their faith carried me, when mine was weak.

“Are you sure things will get better?” I asked, repeatedly.

With conviction, they always answered, “Yes.” Even during our Hell Years, they said, “Yes.” Their belief that better days would come was unwavering.

Sure enough, years later, their prophesies came to pass. Thank God, I’d been wrong.

Most of the women in my Special Tribe were stay-at-home moms, too, often out of necessity. Daycare facilities appropriate for children with autism were rare, if not nonexistent. They’re still hard to find today. Countless individuals on the autism spectrum have nowhere to go after the school day ends or after they age out of their school districts. Often, parents are forced to end their careers or drastically cut their work hours in order to care for them. Especially heartbreaking are the stories of single mothers I’ve met who are on welfare because they must stay home and care for their preschool-age children. Even if I hadn’t decided to quit my job before Cowboy was born, I would’ve been forced to do so before he was two years old. It was a blessing that staying home was what I’d wanted from the beginning of Cowboy’s life.

One mom in particular, Zoe, kept urging me to research biomedical treatments for Cowboy’s autism. Her zeal for research and helping others is Nobel Prize material. She never quit pushing me.

“Kim, you've got to look into these treatments,” she’d say. “This is key in helping our kids get better; it’s a piece that can’t be missed.”

Finally, I listened. And I’m eternally grateful for her persistence; Cowboy’s life, and ours, dramatically improved as a result. Although I gave up hopes of leisurely coffee dates, Zoe and I shared countless hours, over coffee or tea, discussing what new medical breakthroughs were on the autism horizon. She taught me about things like methylation and countless other areas of biochemistry. For the first time in my life, I loved science.

In spite of their own challenges, grief, daily duties, and exhaustion, other parents of special needs individuals have made themselves available to me and Flash throughout the last 18 years, come rain or shine. Countless times, they’ve talked me down from the proverbial ledge. Through the years, siblings, grandparents, and other caregivers joined our Special Tribe, providing fresh perspectives. And so often, our fellow travelers on this journey have brought us humor – our oxygen in times of trouble.

I’ve learned from all of them, those seasoned on this journey, and those whose kids are younger than mine. Those who have loved ones with autism, and those whose children or siblings have other kinds of challenges. I can’t imagine my life without them. They’re my silver lining, my rainbow during and after the storms, my superheroes. They’ve guided, persisted, debated, encouraged, instructed, and listened. Above all, they’ve been the personification of never-ending Hope, reminding me and Flash that we’re never alone.

With gratitude, I’ll spend the rest of my life trying to pass on that Hope to others.