By Kristi Rabe
I’m not your typical writer. I had a great childhood. Yes, I was odd and the entire school made sure I was keenly aware of that fact. I was ridiculed and bullied, but I had a great family. We weren’t well off, but every summer there were campouts and vacations. Every Christmas and birthday was made magical by my parents and every night we sat together as a family and ate dinner and talked. My parents taught me the importance of family, so that all I ever wanted as a little girl was to be a mom – not just any mom. I wanted ten kids. However, after my oldest son was born in 1995, I faced 7 years of infertility, an emergency hysterectomy, 3 failed adoptions, and a divorce. Life never really goes as planned.
My youngest son was born June 6, 2006. I’ve learned the importance of saying it this way. Like spelling my last name before saying it, stating the month, day, and year instead of abbreviating with 6/6/06 usually saves the awkward conversations of Satan and wide eyes of worry and fear. You’d think in this day and age, such a thing wouldn’t be so controversial, but it is and I admit at times I’ll say it short hand to fuck with someone.
I became Mommy when Seth was two. I started dating his dad, Brian, a few months after his second birthday. On our third date, the date where boundaries are tested in the search for those deal breakers, Brian told me of his infamous birthdate over appetizers. His eyes playful with the humor of the situation, he waited for my reaction. Determined to leave a good impression, I told him I remembered reading in a news article, the day after, there was an unusually large number of boys born that day.
“It was his due date,” he said, taking another bites of the cheese sticks. “When I found out I told everyone I wanted to name him Damien.”
I laughed, maybe harder than was necessary, but it would have been my first thought too.
Ironically, Damien fits him better.
For our family, the terrible twos, the constant tantrums and emotional outbursts never ended. They only increased and became more violent. Every toy Seth owns is broken, our backyard a battlefield of colorful plastic and springs, even the indestructible Tonka trucks couldn’t withstand his rage. His bedroom door has large holes where he has kicked and punched it when we’ve sent him there – only because we were on the verge of having a meltdown ourselves. We’ve replaced it more time than I can count as well as four windows.
It isn’t all bad. When I met him, he still wasn’t verbal. He communicated through expression and sign language. That personality, and skill, is still there. He is creative and a true original. Every day, he shows me a new way to look at the world and myself.
He holds himself on the polar opposites of the emotional bar. For all his rage, he is often the most sensitive and loving child I have met. On my last birthday, he woke up at 3:00 AM because he was excited to give me his present. At school, he is rewarded with money for good behavior. He saved up for a month in order to buy me a pink zebra-print slinky from the Student store. The Friday before my birthday, he took it out of his schoolbag and hid it in his room. When he handed it to me, his expression was the best present. His joy in giving was the epitome of love.
His delays mean I get to hold onto the young child days a little longer than expected. He still takes my hand when we walk in parking lots or across streets and cuddles with me each night before going to bed.
After everything I went through waiting for him, he was everything I ever wanted. The longing stopped the moment I met him. I knew he was my baby.
He once told a teacher upon being asked the question of what his mother wanted more than anything in the world, “That’s easy, it’s me. She already has everything she ever dreamed of.”
While his name – Seth, a son given to Eve by God to make amends for loss – fits my story of becoming his mommy, Damien fits his story. For years, he struggled with bullying and other children’s perception that he was odd. The name Damien itself has no ties to Christian mythology of Satan, but a 1970’s film changed the world’s perception of its meaning. Much of my son’s emotional trauma comes from viewing the world differently than others and for a time, I deluded myself into thinking there was nothing wrong with him.
Don’t get me wrong. I read every parenting article on how to handle a challenging child. We’ve tried time outs, time ins, talks, herbal calming supplements, lectures, emotion diaries. Countless times strangers have recommended we try a rewards systems and I smile thinking they must perceive me as the ultimate idiot. We tried hundreds of these full proof behavior modification systems. He always found the loophole. They worked great for a week or two, then he decided to press the boundaries – test how far he could go before we were back to the point where all we can do was ground him to his room. Still, every time, I went back to the Google search bar and tried to find a way to help him and myself get through another few weeks.
We took him to countless professionals, doctors, specialist, drew blood, tested genes, examined the inner workings of his mind – both figuratively and literally. No diagnosis stuck. We went through each testing ritual – sure that it would give us a reason – only to knock another possibility off the list. Even without a firm diagnosis, he was placed in special education just before Christmas 2015.
The tantrums turned from daily to weekly occurrences. His attitude and rage improved. We found a new system for his toys and he was keeping his room pristinely clean. He received one-on-one tutoring and by Easter his self-confidence bloomed. I thought we were on the right track.
Then, at his triannual IEP, his Psych-Educational testing revealed a severe emotional disconnect. He was misconstruing concepts of good and evil and raging internally, instead of externally screaming. Violent images smashed up against stories that never occurred. The way he described his life, himself, his family was grossly inappropriate. Freighting.
We made an appointment with a new therapist. His birth mother had been diagnosed with schizophrenia and we knew the symptoms. In his first session, he admitted to hearing voices and seeing demons. After he talked to the therapist, I was asked to come in by myself to speak with the therapist. She berated me for encouraging his obsession with Harry Potter.
I tried to defend myself. “He hasn’t been into Harry Potter for over a year.”
“You can’t have it both ways. You can’t say you want to help him yet feed him stories of demons.”
“There’s no demons in Harry Potter.”
“Witchcraft, same difference.”
That night, I cried myself to sleep or at least cried myself into staring at the ceiling trying to sleep. The warm tears cooled when they slid down my face; I didn’t have the energy to wipe them away. I was stuck, lost. I am positive person, a person who finds solutions. When a problem comes, I smile and form a plan. At that point, I couldn’t see where I would ever find help, let alone a plan for the next day. It’s one thing to intellectually know your child could one day have schizophrenia. It’s entirely different to know your nine-year old sees demons and hears voices criticizing his every move.
Usually with insomnia, I fiddle with Facebook. That night my newsfeed was filled with news of a Prince’s death. I couldn’t relate and found the usual comfort of seeing all my friend’s daily posts aggravating. While they mourned the loss of someone they didn’t know, yet someone who shaped their life, I mourned the loss of my son’s future – his normal childhood. He will never look back with nostalgia about his childhood – about an icon who shaped some aspect of his life. Instead he’ll focus on regret from actions during psychosis or have an unrealistic version of how the song of his life played out. There was even a chance he would never mentally progress past childhood.
I ached for every time I lost my temper, for every punishment and reward I’d ever given him, for everything I had tried, every time I failed, and everything I’d done as his mother, because all I had done was hurt him more.
Our family lost something and there wasn’t a meme for it. There wasn’t an inspirational quote to help, there were barely links to resources for children with severe mental illness. While developmental disabilities, disease, trauma have countless resources, support groups, programs, and articles, when Googling very early onset childhood schizophrenia there was only the same WebMd copy and pasted article stating its rareness most likely meant it was probably something else.
Only, it wasn’t.
A few nights after this sleepless night, I took him to a concert. Seth loves music. He plays drums constantly, watches videos from concerts religiously, prides himself on knowing the artist and title of each song on the radio. It was his one hobby not centered in fantasy I could still let him enjoy without guilt. Safely from the back seats behind the pit, we watched the band come on stage and he blissfully drummed along. After a few songs, Brian asked if he could go into the pit for a few songs. He had to. It was the largest pit we had ever seen and we go to a lot of concerts. The formation of the crowd swarmed in the center of the room like ants attacking a sweet lollipop melting in the sun. In the center, it broke apart – a swirling backlash against conformity and Seth began showing signs of a tantrum.
“What’s wrong?” I asked into his ear so he could hear me over the noise of the room. His hair smelt of sweat and fatigue.
“He doesn’t love me, he just left,” he yelled back to the entire room, but no one heard except me, the only one listening.
“He just went to dance, baby” I told him.
My son screamed his high pitched wail usually reserved for at home tantrums.
“Do you want to go see if we can watch him dancing?”
He stopped immediately, surprised it was even an option, and nodded.
We made our way to the edge of the dance floor. He tried to see through the mass of bodies blocking the pit. “See, Honey, we can’t really see him.”
“Can we go a little closer?” I could tell he was worried, scared of the crowd ahead. He was also determined. Stubborn to a fault, he would face his fears, because he wanted to see his dad. He had a plan. “Will you stand behind me?”
I looked into his sweet face and saw the baby I fell in love with.
It wasn’t a solution. It could barely be defined as a plan. But, it was an approach. Whatever chaos lay in front of us, I couldn’t control. I could only stand behind him, support him, be his advocate in noise to come.
Before receiving an MFA from UCR Palm Desert, Low-Residency Program in 2014, Kristi Rabe survived twelve torturous years as a corporate, cubical-junkie. In 2007, she returned to school and received my BA in Creative Writing from CSULB in 2012. She is now a technical writer for a large government contractor with a small private office and my own window. Her work has been seen in Bank Heavy Press and Verdad Magazine.
he’s lucky to have you on his side! or should i say ‘standing behind him’. sounds like you’re doing a great job in what’s already a tough job made tougher now. hoping and praying there’s a lot more good music in the future for all of you!! – tetia