A Pair of Miracles

A Story of Autism, Faith, and Determined Parenting

Kregel Publications

Contents

The Call

Here I am; you called me.

— 1 Samuel 3:6

I peeked into the car seat for the fifth time to see if he was real.

"I can't believe they're letting us drive away." I glanced out the back window. No one followed us. We were thoroughly alone with a brand-new human in tow. "They just handed him to us and here we are. I'm the first mom he's ever known."

My husband, Eddie, glanced at the rearview mirror. "I keep thinking someone is going to stop us."

No one did.

The squirming little package snuggled deep in his car seat was safe — at least for now — from the frosty Iowa night and an uncertain future.

"Just in time for Christmas." I sighed. "What a happy Christmas this will be."

"He's twice as small as our boys when they were born." Eddie chuckled.

I nodded, remembering how fat and healthy our eight-pound sons had appeared when they came screaming into the world. This little fellow weighed just over five pounds and he practically disappeared in the soft blue sleeper I'd bought him.

Infertility issues brought us to foster care, and our love for children kept us hoping to make a difference in young lives. We initially became licensed foster parents, thinking perhaps we wouldn't be blessed with another child. But God did indeed bless us with a second son, and after moving to a new pastorate, we kept our foster license active.

"I'm already in love with him. It will be difficult to let him go when the time comes." I fussed with the blanket framing his face.

Eddie nodded. "He's a beautiful baby."

As an abandoned child myself, I kept a permanent corner of my heart for foster children and needy kids everywhere. My dream was to feed and comfort them all. I wanted them to know they were planned for and loved by God. I ached for hurting kids.

Eddie turned down the radio and glanced back at us. "What shall we name him?"

"Can you believe we get to give this tiny angel his first name?" I stared out the window at the stars in the black November sky. "How about Gabriel?"

"I like it. It's strong."

I looked down at the tiny bundle sleeping without a care. "What do you think, little cherub? You like it too?"

A Family for Gabriel

We were only supposed to have Gabriel for six weeks. Three months later the phone rang.

"Mrs. Akins, it's Carol from Lutheran Social Services. Do you have a minute?"

"Sure. What's up?"

"Due to Gabriel's background, we're having a difficult time placing him. Because we don't know his developmental potential and the circumstances surrounding his birth, we —"

"Then why can't we keep him? I mean, he's three months old already."

"I wish that were an option, but our agency's policy is that we only adopt to childless couples."

"That's not fair."

There was silence on the phone. "No, it's not. I'm sorry."

I looked at Gabriel, smiling up at me from his bouncy seat. I was his mother. He was my son. How much longer before they took him?

It was too easy for me to grow attached: the night feedings, the smiles at changing time, the way he grabbed onto my hair. I was completely in love with that little man. And if there was one thing I wanted him to know, it was that he was wanted. He was loved. He had a purpose.

I kept a diary for him:

Dear Gabriel,

Today you reached for me and my heart melted. How very precious you are to me. You are such a dear, sweet baby. You cuddle up with no fear of tomorrow. You're secure in your little bed as you sleep next to Mama and Daddy each night. Oh, how very much we love you. But I know that one day, I'll not be able to hold you in my arms because you belong to someone else. I wish it wasn't so. I even pray it isn't so. But I want God's perfect will for your life, dear one. I want you to grow wise and strong, and for you to fulfill the purpose God has for your life. How very precious you are to me, but how much more precious you are to God.

Love, Mama

Six months grew into nine months. Eddie and I filed papers with the state of Iowa to adopt. We submitted to a home study and revealed every single wart and skeleton of our lives. If no one was willing to adopt Gabriel, we were. We loved him as our own.

I prayed constantly.

"Dear God, please give him to us if it's your perfect will. If not, please help me to let him go. But you should know, I don't want him to leave. I want to keep him. Please, if there's any way at all, please let him stay."

Months went by and as he grew, we were hopeful that God would allow us to adopt this beautiful boy. He loved playing peekaboo with our youngest, Noah, and laughing at our older son, Jesse. He adored our daughter, Melissa, and squealed when she walked into the room.

"Mama."

He called me Mama!

When he was nearly eleven months old, the phone rang.

It was Carol from Lutheran Social Services.

"This is hard, Karla, and I have strong mixed feelings. We've found a family for Gabriel."

I couldn't speak. My eyes welled up with tears.

What do you mean you found a family?

He already has a family.

And just like that, with one day's notice, he was no longer ours. He belonged to Them. Those I Did Not Know. And I would never see him again. He would call someone else Mama and she would watch him take his first steps, learn his ABCs, and graduate from high school.

The next day I dressed him in his cutest outfit and packed all his clothes, except for the outfit I found him in at the hospital, his ID bracelet, and a pair of shoes. I sent his diary and a note to his new parents about all his favorite things: steamed carrots, listening to music, strawberry ice cream.

I imagined how excited they must feel to finally have their own child. Something they undoubtedly had longed for and prayed for. I imagined his reaction to them and how he would delight them because he was a bubbly, happy baby, and he'd had much attention from siblings and church folks and wasn't afraid of strangers. I was certain they would fall in love with him immediately.

I couldn't carry him out to the social worker's car. I stood in the kitchen beside him in his car seat on the table and kissed his happy face with my tears. The little angel had no idea he'd never see me again — that he was going somewhere new and strange and wonderful. Finally, Eddie picked him up and walked him out to the car, and I could hear the tears in his voice as he spoke to the little fellow that he too had grown to love.

"You're getting a new mom and dad, Gabe. You're going to have a wonderful life."

The pain was the most excruciating I'd ever known.

It was worse than death because he was out there somewhere and I didn't know what he was feeling or if he was hungry or scared. I had to get away, to wrestle with these overwhelming emotions and cry out to God. He and I had business to take care of.

Wrestling with God

My friend Nancy, who is now with Jesus, had a family cottage on a lake. It wasn't fancy but it was a peaceful, comforting refuge. How I managed the hour drive I can't remember. But once inside the security of its walls, I cried as I'd never cried before.

"Is this what it's like to lose those you love, Lord? How many of your children never return?" Over and over I cried, "Though you slay me, I will praise you."

In every room of the house, I shouted it aloud, thankful that it was off-season at the lake and no one was close enough to hear my gut-wrenching wails. It was a primal kind of crying I'd never experienced and hope I never will again.

Weeks later I got a picture of Gabriel and his new parents from the social worker. They were adorable. She was petite and pretty and he was extremely handsome with dark features. With Gabriel's dark brown eyes, he could easily pass for their own biological child.

I was happy for their joy, but felt as if God had chosen them over me because they were more worthy. "What's wrong with me, God, that you couldn't see fit for us to keep him? What do they have that we don't?" Grief can skew your thinking. And I was confused, hurt, and not sure what to do with these overwhelming emotions.

But God knew.

And three months later?

We got the call.

Sea of Grief

Blessed are those who mourn, for they will be comforted.

— Matthew 5:4

Those first minutes, days, and then weeks without Gabriel, I felt as if my head was detached from my body and I was watching myself from somewhere on the ceiling. I burst into tears at the slightest provocation.

"Mama, what's wrong?" Jesse and Noah asked in unison when they caught me crying in the basement laundry room.

"I forgot to put soap in the washing machine."

I'm glad I didn't know that this period of drowning was but a dress rehearsal for what would become a lifelong swim in troubled waters. The sorrow we'd experience as we learned to navigate the crashing waves of the twins' disabilities threatened to envelop our happy home with dark, heavy storm clouds.

The Call

One afternoon as I was helping our children with a history lesson, the cordless phone on my desk rang.

"Hi, Karla, it's Jenny. Listen, we have preemie twin boys at the NICU at Blank Children's Hospital in Des Moines who need a home. I was wondering if you and your husband could head down there for an infant CPR class because one of them is ready to be released today."

"Uh, can I talk to Eddie and call you back?"

"How long do you think that will take?"

I was surprised by her impatience. "Give us thirty minutes?"

"Fine. I'll be waiting for your call."

I called my husband, who was in the church office a block away, and asked him to come home. We sat the children down and talked to them.

"Remember how the Bible talks about taking care of orphans and widows? And that if we help them it's like taking care of Jesus?" The kids nodded. But they were afraid too. They didn't want to lose these babies the way we lost Gabriel.

As a family, we prayed and decided to tell the social worker yes. We would take it a day at a time.

"I'm glad," she said. "I'd already put your name on the court order." Isaiah came home first. There was nothing romantic about our first interactions with him. As soon as I dressed him in his going-home outfit, he promptly threw up all over it. That should have been my first clue. Life with these little ones would be fraught with challenges.

Eddie taught at a Bible college in Des Moines, ninety miles from our house. After classes, he stopped at the hospital to rock and pray over Isaac for the month he remained in the hospital. I called every day to check on him and ask how he behaved compared to his twin.

These babies cried and screamed — a lot. I knew something wasn't right about them but assumed it was because they were premature. They didn't cuddle up like my other infants did. Instead, they arched their backs and fought being fed. The only way to feed them was to swaddle them tightly and tug gently on the tiny bottle to help them remember to suck, swallow, and breathe. Sometimes they'd forget to breathe and we had to remove the bottle and let them catch their breath before continuing. It took an hour for them to empty their tiny two-ounce bottle and they had to eat every two hours.

This wasn't the happy experience I'd hoped for when signing up to adopt. I had no idea of the neurological damage they had as a result of being born to a mother who drank alcohol.

"Mama, my ears hurt when they scream." Jesse didn't like the constant crying. No one did.

"Yes, I know." I held him next to me on the couch. "Maybe it's because they are so little and their tummies hurt."

Months later we learned that the boys were on the fetal alcohol disorder spectrum. When a pregnant mother drinks, the alcohol enters her bloodstream and crosses the placenta. The baby metabolizes alcohol slower than the mother and the alcohol concentration in their blood is much higher than in hers. Because this interferes with the delivery of oxygen and optimal nutrition to the baby's developing brain, there are devastating consequences for the child. Impairment of the central nervous system, facial features, bones, and heart may occur.

The screaming and crying were constant. They didn't interact, and in the early years they crawled about the floor howling and biting one another for no apparent reason. Their backs were covered in bite marks (they got their teeth early — at the age of three months). Soothing them was nearly impossible, except for when we took them for a ride in my daughter's noisy car. Meal times were a dreaded lesson in dodging flying bowls, sippy cups, and food.

At their first developmental checkup, their heads measured at the tenth percentile on the growth chart in comparison with the rest of their bodies.

The doctor entered the room and announced, "They're microcephalic."

I knew what she meant because I'd cared for foster children with microcephaly before. Their heads were too small. If their skulls didn't grow, their brains would be squished, and there would be dire consequences: seizures, severe cognitive development, even trouble walking.

Shock does strange things to a person. When the doctor told me, I pictured dinosaurs. They had small brains but they seemed to get along just fine. I remember looking the doctor in the eye and saying so.

"Well, yes," she said. "But dinosaurs' brains didn't have pressure on them."

Tears spilled from my eyes as I looked into their little faces. I felt like the walls were closing in. I couldn't get out of the exam room fast enough.

Those first four years we traveled blindly from doctor to doctor with unanswered questions. The twins' heads were growing properly so the tantrums, terror, and self-injurious behaviors were a mystery to me. One of their developmental pediatricians told me that I wasn't spending enough one-on-one time with the twins and that was why they were so difficult.

I had been a mother long enough to know they were not developing in a typical way. They didn't play like other children and showed no interest in make-believe. They didn't talk and potty training was out of the question. They had no concept of what a bathroom was for.

When we moved from Iowa to Arkansas, we enrolled the twins in a developmental preschool. It was there that we started our journey toward learning what was truly going on with the boys and about a condition I'd never had any experience with before.

Autism.

It's hard for me to imagine now that I knew so little about autism. But it was 1998 and the disease wasn't as prevalent back then, while today one in fifty-four boys are affected. Well-known organizations, such as Autism Speaks, hadn't been founded yet, and the only information I could get my hands on came from brochures at doctors' offices. Reliable, results-proven therapies, such as Applied Behavior Analysis (ABA), were just beginning to surface.

Stages of Grief and Grace

As the twins grew and failed to reach normal milestones, the grief was often debilitating. I remember apologizing to my husband for my desire to adopt these little boys, but he never wavered or expressed any regrets. I was grateful for the anchor I had in him because I worried about the effect the constant screaming had on our relationship and our other children. Sometimes I wondered if our family would survive the stress.

Grieving is a natural reaction to learning about a child's disability. And it comes and goes throughout the child's life because a parent can't help but wonder "what might have been." You may find yourself in different stages of grief at various and unexpected times. I experienced each stage in startling ways, but now I look at them as precious times of molding by God's hands as I learned to rest in his grace.

Dental and Isolation

I didn't stay in this stage long because I knew something was wrong. But I did isolate myself in some ways. Often, the isolation wasn't entirely my fault. Most of my friends didn't understand what I was going through. But in their defense, I didn't exactly spell it out either. I didn't want them to think I was sorry for adopting the twins. I didn't want anyone to know how hard it was because I feared their judgment. In hindsight, I wish I had reached out more for help in those dark times.

Anger

Sometimes anger would manifest itself in strange ways and at the wrong times or things. I couldn't control autism. I couldn't fix it. My anger toward autism would manifest by my anger at things that weren't significant. I'd find myself furious with other things I might be able to control, such as a rude medical professional or social worker or an ignorant teacher. I was angry at the laws, angry at the medical community, angry at anyone who glared at me at the grocery store because the boys were so loud. Finally, I had to admit that what I was really angry about was why God allowed children to suffer. Why had he put adoption in my heart only to have it turn out so difficult?

Bargaining with God

I don't remember bargaining with God in terms of, "God if you do this, I'll do this." But I did ask (and still find myself asking at times), "Why?" A lot. Logically, I realize that God has no obligation to tell me why. But my heart longs to know.