‘Is this normal?’ My husband watched me jump into that black hole in an effort to pull her out.’: Woman tells how autism affected her marriage, ‘I could only see what was visible in my autism-centered world’

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“The moment I laid my eyes on her, I knew she would alter my life in ways I had no ability to perceive just yet. It would have been impossible to know her love would beckon me to pour myself into her all day, every day for years, at the risk of losing my husband. I was already in love with her, and we had just met.

My husband, Greg, was the whole package. From the beginning, I knew he was out of my league. That didn’t scare me because I had the confidence to match it. Greg effortlessly turned heads with his classic good looks, tall, dark and handsome. He was the life of the party, talented, honest to a fault, athletic, and was driven to be successful in the world. Of course, he wasn’t perfect. He had a Midwestern nasally twang to his voice, and as a Southern girl, that took some getting used to. Most importantly though, we fell madly in love, he put a sparkly diamond ring on my finger, and he was all mine. At 22 years old, we were in the process of making our dreams come true. We planned a beautiful, comfortable life complete with a house full of happy, healthy kids. The magic was happening, and we were right on schedule.

After college, we were married in a traditional wedding, in a traditional church with traditional music, except for the Beatles song we threw in at the end because we wanted to show the world just how edgy we were. We both secured good-paying jobs and within a year, owned our own home. For us, the American Dream was alive and well. We truly believed we would build our lives together, and it would play out like a storybook. And then I met Lizzie.

The moment Lizzie’s big, brown eyes met mine, I knew my life would never be the same. It only took moments together to love her so much, the rest of the world was silenced when she was around. Although she was my second born, this love felt different because she was our first girl. I imagined her as my playmate and best friend. I dreamed big dreams for the special mother-daughter time we would spend together: baking our favorite Christmas cookies, painting each other’s nails, and shopping trips that always ended in a sweet treat. A few days later, we brought home our perfectly healthy, beautiful baby girl from the hospital. Just as I had no way of knowing I would fall so deeply in love with my daughter, I also had no way of knowing none of those dreams I dreamed for her would not be possible for a long, long time.

At first, it started so slowly. All babies got fevers. All babies got ear infections. ‘Is this normal?’ I wondered. I felt a nagging uneasiness in the pit of my stomach there was something more wrong. Was I imagining her to be worse off than she actually was because I was a nervous, over-protective mom? ‘Everything is fine,’ the doctor said. ‘This is nothing more than a string of normal childhood illnesses.’ I pushed down my gut feelings and trusted those who had more knowledge than me.

Then she began waking up from her naps drenched in sweat, tightening her whole body and screaming in pain. This was followed by diarrhea, rashes, more fevers, more ear infections, and a permanently snotty nose. She began flapping her arms, walking on her tiptoes, banging her head on the ground, lining random things up, repeatedly opening and closing cabinet doors, throwing tantrums, and even lost the little language she had. Finally, she withdrew into her own world and became isolated from everyone who loved her. I would stand right in front of her, screaming her name, but there was no response. She didn’t even acknowledge I was there. Now those beautiful big brown eyes I fell in love with were glazed over and hollow. Her body was present, but her mind was somewhere else. She had fallen into a black hole, and I didn’t know if there was a way out. The doctors called it autism.

People tried to reassure me by telling me no one was to blame, as if that made what was happening to our family any better. An enormous weight had been placed on my shoulders, and even if I hadn’t caused it, it was still up to me to figure out how to make it better.

I woke up, morning after morning, with bloodshot eyes from the late-night hours spent on the internet researching. I stalked a little girl with similar behaviors until I found her mom and grilled her for insight. I read about another little girl who lived over 2,000 miles away who had made progress, so I researched until I found her mom’s phone number. When the mom answered her phone, I begged her to tell me how she reconnected with her daughter again.

I jumped in with a thirty-hour-a-week home therapy program that focused on Lizzie’s behavior, speech, and sensory needs. I hired the therapists, immersed myself in learning the ins and outs of the complicated step-by-step programs, and carried the concepts through the rest of our day when there wasn’t a therapist present. I changed her diet and ran every medical test possible to make sure we weren’t missing something. When we ran out of money, we borrowed money from family, applied for grants, and I even wrote to Oprah with the full expectation of hearing back from her. I lived in an alternate reality centered around pulling my daughter out of the abyss of autism. I know the real world kept spinning around me, but my hyper-focus on my daughter kept me from caring. I pushed everyone away, including my husband. A mother is only as well as her sickest child.

This traditional girl began parenting in a very untraditional way. Lizzie had no understanding of the social norm or what it meant to act properly in public. I felt a new freedom in letting Lizzie be Lizzie. I allowed her to dance in the midst of a sitting crowd, sing louder than was appropriate, and wear the mismatched clothing she preferred out in public. I cast aside the judgmental stares, embraced her difference, and parented her unique needs to enable her to become the best version of herself.

Day after day, my husband watched me willingly jump into that black hole in an effort to pull her out in inch by inch. He wondered if he had lost not only his daughter but also the woman he fell in love with. Where was the woman that used to tenderly care for him and make him feel like he was the most important man in the world? Instead of appreciating what he was doing, I often focused on what he wasn’t. I couldn’t understand why didn’t he actively pursue new therapies with me or why didn’t he read my mind and do exactly what I needed with the kids. I had blinders on. I could only see what was visible in my autism-centered world.

Despite sitting upstairs in front of the TV all alone night after night, wishing he had anywhere else to be, my husband stayed. He didn’t have to. Many in the same position haven’t. But he made the conscious choice to show our family selfless love, simply by being there.

Several years later, I was sitting at a table with Lizzie, trying to entice her into painting a house, and as usual, she refused to acknowledge me. I instinctively picked up the paintbrush and playfully painted her nose. She looked up at me with surprise, and our eyes met. For an instant, I could see her soul. The interaction between us caused the hairs to stand up on my arms. Tears streamed down my face as I felt a connection with my little girl for the first time since she was a baby. I light-heartedly tried painting different parts of her body until she stood up and walked away. I had seen the light in her eyes return, even if it was only for a short second. She was telling me there was hope.

Courtesy Julie Hornok

I dropped everything and ran into Greg’s arms. He was the first person I wanted to tell about what had just happened and the only person who understood the depth of meaning in the interaction. It was then I realized we had something together I could never have with anyone else. We had shared life experiences that only made sense to both of us because even when we were not communicating properly, we were still in it together. We had history.

As Lizzie’s eyes were opened to the joy of interacting with me, my eyes were opened to all Greg had done in the tough journey we had gone through over the last few years. I was suddenly flooded with gratitude for the strong man he had become and the tough sacrifices he made. He had been there every step of the way, through every added therapy and new bills that were due. Although we didn’t always agree, he always supported me. He always supported us.

I began to allow him back into my world. We moved forward now fighting for Lizzie together. The burden on my shoulders had not been lifted by the absence of the struggle of autism, but by sharing it with the very man I once refused to allow to carry it.

For us, there is no storybook ending where everything turns out how we once dreamed it to be. The plans we had for our life will never happen. Our life together is messy, gritty, and often misunderstood by others. None of that matters because we have us. We have our history, and we have a future that no longer needs a plan to be perfect.”

Courtesy Julie Hornok

This story was submitted to Love What Matters by Julie Hornok. Visit her Facebook page here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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