Even though we don’t know each other very well, I assume it’s alright to call you a friend.
Perhaps one day we will call each other friends, because I know that we all struggle and triumph in our role as a parent. I know that all of us pray for strength and will power, hidden somewhere, deep beneath us—ready for action when needed.
I am Paula, a business woman who lives with her son, Will. I have a story to tell you today. A story most people are so afraid and uninterested in, that they remove people like Will, from their perceptions entirely. It’s human nature, I guess.
My son was eight years old at the time and had been recently diagnosed with autism. He needed to be in a wheelchair because of his weak limbs. He fell severely sick and had to go to the hospital. His pre-challenging disability due to autism made me admit him in the hospital right away. We were just a family of three: my husband, my son Will, and me. My husband was actually my second husband, so he was Will’s step dad.
He had been a really good step dad. He taught Will to read and write. He really loved Will and he was all in. He had a very instinctive understanding of Will’s needs and behavior. I don’t know how and when he learned to be such a wonderful dad to a special-needs child. On the day of our wedding, he put a medallion around Will’s neck and promised to love him like his own son. But one day, he was a changed man.
Vrrr! Vrr! Vrr!….
My phone rang. I galloped up the stairs to pick it up. Even before I had picked up, I had that striking portent of the things to come. Will and I had just come back home, after five days of staying at the hospital.
“Where are you? I came back home with Will to find the house all empty. Can you please explain yourself?” I said.
“I am sorry, but I will allow you to talk to me only one time a week,” my husband answered on the phone with such disdain that it was hard to fathom.
“What has happened all of sudden? Could you please be more specific?” I was questioning him frantically. I couldn’t make out what had gotten into his head.
“You can call me only once a week for twenty minutes,” he made it clear without going into any detail. I had been unable to continue the phone conversation, my words choked back by tears.
I guess something about the hospital had just broken him and he bailed out. And so he just moved out when Will and I were not even at home and he didn’t tell us where he was.
Everything had a value far greater than money. Will missed him in his own subtle ways. Will and my husband had a story, a memory, and most importantly, he had a unique place in Will’s life. Perhaps my husband’s previous kindness made his absence all the more unbearable. A great thing about autistic kids is that they don’t care about their mother or father. All they need is love and in return they just offer love. Will was no different. He reciprocated only with love to his step dad.
For months, we lived like this, without my husband at home. Will was a mess because he had just gotten out of the hospital. His special aid nanny had quit. I had started a new job at a start-up. I knew with things going on like this, I couldn’t keep the job. My husband, my support system, didn’t stay in my life. For the entire time he was gone, I kept cajoling him to come back every time I called him; yes, in those twenty minutes.
“No matter what you need, I’ll do it. I’m all in,” I told him, to the extent of begging. Everytime.
“Think before you promise me anything,” he warned me.
“I love you so much. I am here to give you whatever you need.” I was so desperate that I was ready to do anything at that point.
In the meantime, Will did what he always did, being the kid that he was. When Will was in his wheelchair, he was quite invisible to people. It was his superpower, and that was what made him stand out. His will to survive, regardless of every adversity in this world, where only perfectly limbed people could survive and lead a prosperous successful life, was strong enough to keep him going. Will was quite a remarkable child for his age, despite his disabilities. Will is autistic. Maybe this is a scary word for you. The fear for me alleviated, once I plunged into the waters of neurodiversity and found a home, where just Will and I existed. I sometimes feared the world we lived in and its lack of understanding would shake me to my core.
Will started to focus more on studies and the one most important thing he picked up was coding. Will’s remarkable understanding of computers amazed me. He became calmer and more driven. My husband’s absence changed something in his behavior and attitude. I’m not sure though. I stopped calling my husband for twenty minutes each week. It became more infrequent.
“Wow, Will! The slurs in your speech have almost diminished to unnoticeable,” I said one day, hugging him tight. The glitter in his eyes told me how proud he was of himself. He gave me a high-five immediately—a token of victory over all the wretchedness in his life.
Will and I took long walks more often. He would sit in his wheelchair, pushing himself along the ups and downs of the walk way, just like his life. He was chatty otherwise. But not while walking. I wondered what he thought.
He would glide swiftly and silently down the road in pitch darkness, his wheels whispering on the asphalt. Pedestrians moved out of his way without making eye contact, or even realizing his presence. Invisibility was in an assortment of bags as superpowers go, because Will couldn’t turn it off.
“Be careful,” I hollered as Will crossed the street. Cars were always a concern.
From an early age, parents and teachers teach children not to stare at people in wheelchairs. Kids are taught that it is rude and inconsiderate to look at them in the eyes. It’s taught so many times, that over time, the constant reminders flip a switch in children’s brains which always works—never ever fails. After a certain age people don’t even need a reminder, it just becomes the muscle memory which lasts a lifetime unless you yourself sit in a wheelchair.
After a couple of months, my husband called me. Out of the blue. Just when I had almost convinced myself that my life was going to be just about Will and me.
“I am finally ready to share with you what I need,” he sounded utterly insensitive and emotionless. I, on the other hand, was completely floating on the clouds. I was so excited, because I knew I was ready to give whatever it took—for Will’s sake.
I showed up to a really mediocre Italian restaurant and sat down with my husband. He pushed this piece of paper across the table at me. In big letters at the top it was written;
He has a name, but I choose not to use it.
Underneath that he had listed out very clearly all the most difficult symptoms of Will’s disabilities—rocking, flapping, lining up objects, shaking sticks, etc. Next to each one he wrote, “I will no longer tolerate this in my house.” This knowledge swept through my head like a wild wind through a field of wheat, leaving it mussed and disarranged. I was in a completely disheveled state of mind.
I knew Will needed more time to process information, but I also knew that he was processing all of it. The tik-tok of the clock ticking away, the way someone’s lips moved, and the crunching sound of leaves in our backyard, he could decipher all that. Will heard everything. He is a wizard on the computer. Once Will had broken into one of my husband’s online accounts to post stories about the use of robots in the real world.
So I looked at the list, and just kept staring, I even stopped blinking momentarily.
“This is impossible!! How can you expect this? No eight-year old can agree to never having a behavioral challenge, let alone a disabled one. Do you not remember he just left the hospital?” I blurted out in fury, unable to comprehend how to react to his preposterous demand.
“I don’t know if it’s possible or not, but it’s just what I need.” He shrugged his shoulders with no hint of regret. He just kept looking outside the window. Hearing his words made my heart lurch. It seemed like an eternity, while I worked vigorously, internally to analyze his words.
“Well, what are you expecting from me? What do you want? Do you want me to send him away?” I asked with furrowed eyebrows.
This is unbelievable, but I will say, he sort of perked up when I said that. I started rubbing my eyes, not because they were teary, but because they were dry after staring at him constantly in disbelief. I caught myself fidgeting with my clothes and my purse’s handle.
“Well, if that’s what it takes.” He was so blunt. It was hard for me to even comprehend. My whole world had been blown away like feathers in the wind.
“Where do you think Will is going to go?” I held my eyes in a steady gaze trying to make the situation more intelligible to him.
“That’s not my problem,” his embarrassment made him sound clipped and unfriendly. How could I coalesce my memories and his explanation? The tentacles gasped for connection, yet nothing was there to substantiate.
And then he said the most incredible thing that I had ever heard.
“I love you so much, and I love your son and I miss you and I want to come home and be a family again, but there’s no place for Will in our home,” he didn’t pause at all, as if his thoughts were having a hard time trying to catch up with his speech. I just listened to him, speechless, my mouth agape. My whole body almost froze. At that moment I could feel the sickening panic blooming in my stomach like a drop of ink in a bowl of water as the minutes ticked by.
At that moment it wasn’t so much of a decision, rather it was a chasm opening inside my chest. With every minute the chasm kept widening. One side was this dream of a life we were going to have as a blended family and on the other side was the life I was now going to lead.
I pushed the paper back across the table.
“You promised me you would never make me choose,” I said with conviction. “I have been working on keeping an open mind and heart and how to hold space for my loved ones. Perhaps you have been holding space only for me, but I am not going to leave Will at any cost. Maybe today you are not ready to be with us, but then there won’t be a spot left for you later either.” Tiny teardrops trickled down my cheeks, but I knew they were a testament to the fact that I had made the right choice.
I got up and I left the restaurant feeling alone and bereft. I had lost it. He wrote up the divorce paperwork that night. I would love to tell you that things got better, and I got rid of that loser. But the truth is, everything turned upside down. There was a dwindling hope that also went away. Poof! The divorse was nasty. He was nasty. He got the house. I felt like lurching from one crisis to another. Making a separate arrangement for living took away all my enthusiasm for life. Struggle to come back to our feet took a toll on Will too. But we sustained—with flying colors.
He never even said goodbye to my son who he had been raising half his life. Uhh…
I was so mad for so long; I was furious. When I went to do yoga with all those people, I tried to be spiritual, but they kept preaching to me.
“You need to forgive him. It’s not for him, it’s for you; you need to move on and lead your life.”
Why should I have forgiven him? It’s been years now, and if I still haven’t found my way to forgiveness, I have found my way to some sort of peace.
I have had to go to the yoga mat for my son again and again and again, ignoring all the preachers in the yoga class, just to save my sanity.
The gift of self sustainment that my husband accidentally gave me, by leaving the house, was never going to cost worse than the one I had already paid. Which meant there was never going to be a barrier to advocating for him that I couldn’t do.
That day in the restaurant when I made the decision, it was not a decision. What I realized was that my son, who is a beautiful, bright, and a curious, delightful soul, deserved nothing less than complete belief in him and unwavering support. Anything less than that would no longer be tolerated in my home. My husband was my greatest asset and more than that, my greatest vulnerability too. When he left, I was burnt and it left a mark. Will and I had made a different life, grown a complete new skin, but somewhere there was a hidden patch, still red and tight and puckered, and sore to even touch. Yet our will to survive was ever so strong. When my husband left Will and me, our sense of purpose didn’t fade away and we didn’t become lost like an empty paper bag being blown this way and that in the wind. We had a strong foothold to fight whatever might come.
Will did not choose autism for himself, it was ordained by God. Maybe because the great God knew that he had the will to fight and win over it. I used to say Will has special needs, until I learned it was okay to say he has a disability. He has other qualities which I previously ignored. Such as thinking, which is something Will does very slowly. He is quicker at feeling. I am in awe of his expression of feeling. He could feel happy or sad or angry or excited in the wrinkles of his eyes. Will could feel other things too, which were more difficult to explain. Those who had already walked down Will’s path have taught me to avoid calling him a superhero. Even though deep down in my heart, I know that he still is. I am sure, with his own will to survive in this world of physically supreme superheroes, he has carved his own path. Will wants to scour his memories of his step dad and move on.
When Will was four-years-old, his pediatrician predicted that he would end up in jail one day. Will had spent twelve years proving that man wrong. After three stays at Chicago Children’s Hospital from the ages of eight to twelve. Will hasn’t had to be admitted to hospital again in six years.
Will’s app for teaching autistic kids multiplication on iPhone, is soaring through the roof and selling like hot cakes. His life has a purpose which has given him a precious, if precarious hope, for what might follow it.
Author’s Note: I have written this short story using the format of epistolary. Epistolary writing is frequently thought of as narration in the form of letters.
Connect with Penmancy:
Penmancy gets a small share of every purchase you make through these links, and every little helps us continue bringing you the reads you love!