Children Aren't Raised in a Day

When Charles was born, I heard the strength in his cry. The way he gasped deep breaths and tightened his fists, he was strong. I knew he was going to be a fighter from the moment I heard his first scream. What I didn't know is how much he would have to fight.

Within seconds of his birth, Charles was whisked away by the nurses. They carried my baby down the hall and reassured me he'd be taken care of to the best of their abilities.

I did not feel comforted.

My baby was diagnosed at birth with Trisomy 21. His heart needed surgery within what felt like seconds after his birth. I didn't even get to hold him on his birthday.

It seemed as though the chaos never dialed down. Once we finally took him home from the hospital, we were booked with doctor's appointments and check-ups.

"Why us?" I would cry to my husband. "I just wanted a baby."

"You have one, love. It just so happens to be a baby in special need of his family." My husband would often remind me of this when I felt discouraged. Sometimes the overflow of Charles' needs stripped him of his infancy in my mind. I would often stare at him in multiple doctors' offices as the tears streamed down into the corners of my mouth. I wondered why I couldn't just have a "normal baby." What had I done wrong? Was it my diet? My genetics? Why was this baby so unhealthy?

The only things keeping me connected to this child were the sleepless nights in his room. Gently lifting him out of his crib and resting him on the quilt on the floor, I would lay beside him with his chubby face in front of mine. The sound of his soft coos and snores reminded me of the value of his life. This is my baby, not my frustration. He was sweet and precious, and deserving of all my love and attention, no matter the cost. I whispered those words to myself and kissed his cheek as more tears rolled down my face.

At three years old, Charles was struggling to walk, but he tried. He would stand and bounce in his crib every morning until I woke up. Sitting crisscrossed in the corner, I watched him wobble and stumble around his room. He was getting it. That's what the doctors said.

"Some kids never learn to walk," he would say in an attempt to encourage me. "Charles is stronger than most kids."

Charles expressed this strength in his knack for throwing. He would chuck almost anything in his hands. He made me smile.

At five years old, Charles was diagnosed with an autism spectrum disorder. My husband and I continued with multiple debates about starting him in school.

"He's too young, Brent."

"He needs it, Honey, he needs the assistance. You are a wonderful mother, but there are some things we cannot help him with. This is true for all kids." He squeezed my hand. I didn't want to think about Charles starting school. He would turn six in the spring of his kindergarten year. Perhaps a head start would be good for him. That's what I reminded myself of as we signed him up for Lincoln Creek Elementary, the best public school for special education in the county.

At seven years old, Charles' vocabulary consisted of eleven English words and eight signs. One afternoon, on the way home from school, I lost control of my emotions. Charles began whining from the back seat. 

"Mom," he would say and then grunt. 

"What is it, sweetie?" I asked, not looking back. He continued to repeat the same word and grunt combination before I finally glanced back in the rearview. 

He was calling "mom" and then signing the word sad. 

"I'm not sad; I'm just a little worried...scared," I expressed.

He grunted again.

"Because I want you to always be happy." I smiled to reassure him, and he flashed me one back. 

At a parent-teacher meeting later that week, his teacher suggested therapy for his motor and speech skills. Brent walked me out of the classroom before I could burst into tears. Charles was going to school, he was walking, and he had his way of communicating. I didn't understand why that wasn't enough. I couldn't face the fact that he needed even more help.

"Thank you, yes, we've been thinking about that," Brent told the teacher, "If you have any company recommendations, that would be great." And with that, we were gone.

We did get Charles into therapy. He took speech classes until he was sixteen and continued occupational therapy until turning thirteen. Watching him grow was equivalent to witnessing a miracle. He began speaking full sentences within a year of therapy. After several years, he could communicate his wants and needs clearly. He was so successful. However, by twenty years old, he wasn't on track to graduate high school. With one more year left of school, he still lacked several basic reading skills.

"We have done everything for him, Brent! How could there be more? How is he not okay yet?" I cried out to my husband as soon as we arrived home. My desire for Charles to succeed conflicted with my longing for everything to settle. I wanted a life that reflected normalcy. I forced myself to believe there had to be a way to live a "normal life" with a special needs child, but it simply wasn't true.

Disabilities are a minority, and that doesn't make them a tragedy. My life as Charles' mom was difficult, but it was the most rewarding experience of my life.

"Honey," Brent pulled me into a hug and then looked into my eyes, "Rome wasn't built in a day, love. Children aren't raised in a day. We're doing good, and so is Charles." The words washed a wave of peace over me, and I broke out into a smile.

"Mom? Are you sad?" Charles peaked into the room, confused by my teary eyes.

"No, I'm happy. I love to see you happy." He ran to me and hugged me tight. Charles is still my baby. He will continue this construction of his best self with Brent and me to encourage him. We'll build up our city one step at a time.