Since the day Isis was diagnosed with autism, my life has revolved around a Plan. A mission better than any scriptwriter could design for Tom Cruise in the Mission Impossible movies that made him a household name. My mission was to get my daughter to North Carolina so she could have a chance at the life God had messed up.
In 2007, I took Isis to an appointment at Akron Children's Hospital in Akron, Ohio. She was referred by her pediatrician to confirm suspicion surrounding autism. This was the talk among the doctors: Isis was autistic. I said they were crazy. From what I knew of autism, it was congenital. I didn't know what was happening with her cognitively, yet I knew this: Isis was not born with autism.
I told her doctors babies didn't develop typically then out of the blue stop doing the things they had done all of their short lives. Isis was born healthy and beautiful. She made eye contact, she vocalized, then said words on time. She walked on time. She never crawled only due to her father and I never placing her on the floor. She was always in our arms. She was our first and only child. She was precious.
We were so young and ignorant of parenthood, we thought we were protecting her from every harm imaginable. Therefore, I asked the doctors, how could we have failed to protect her from something we had no knowledge of?
Although Isis had begun experiencing multiple seizures in rapid succession, had ceased any attempts at verbal communication and paying attention to environmental stimuli, I was still in denial. I kept telling myself whatever was going on with her was temporary. "She'll come out of it and get back to normal." I said. I repeated this in my head so many times, I woke up out of my sleep saying it.
My happy, bright, energetic little girl had transformed into this tiny stranger my psyche could not absorb. I could not comprehend why she no longer slept at night. Why did she run around the house consistently without stopping? Wasn't she tired? In her mind, was she chasing something or was being she being chased?
When I attempted to stop her from running, she screamed and kicked at me. Isis had NEVER done that prior to the first seizure. I'm not one of those parents who believes in allowing a child to whip your tail. My daughter knew better.
Yet this little person...this person I brought home from the hospital (after hearing the neurologist repeatedly tell me he couldn't explain the origin of her seizures) she didn't seem to know you don't kick your mother. To my growing dismay, she didn't know ME at all.
She didn't call me "Mama" anymore. She wouldn't look at me. Nor did she smile at me or dance with me. In fact, she never listened to her little toddler songs again. Instead, she was obsessed with shiny objects and would sit and look at absolutely nothing on the wall for hours. Hours.
If I tried to intervene, all hell broke loose. I could no longer take her on shopping trips. She would rip clothes off the racks. She knocked food off of the shelves. When she bit this White woman's leg in the grocery store one day, I thought I would die.
That woman's face became red. I had never seen anyone turn around so quickly. I had to grab Isis and explain to the woman she was having "issues" the doctors couldn't explain. That's the only way I could explain it. Issues. Thank God she was nice about it. I was surprised Isis didn't draw blood. She bit that woman, hard.
I left my cart right there at the checkout line and took her little screaming, kicking self out of there, fast. People were looking at us. They thought I had done something to her, yet I hadn't. I was so embarrassed. And so very confused. What was wrong with her?
I didn't drink and I wasn't a smoker. I drank plenty of milk and took my prenatal vitamins faithfully. I panicked when a nurse mixed up my urine with another woman's at the doctor's and levels of marijuana were found. In my youthful ignorance, I thought they were going to take my baby away from me when she was born. Although I didn't know it at the time, I suffered from anxiety.
I thought she was possessed. Her father and I weren't into going to church at the time. I was a backslider and didn't call on Jesus for much. I believed as long as I was earning a decent living and running my household, I was all the God I needed. In one single moment, autism shattered every bit of security I held dear.
During that time, I seldom acknowledged God. After all, what had he done for me? Gave me parents who were incapable of raising me? Set me down in a concrete jungle where I was forced to listen to women being beaten through walls? Exposed to people being murdered in the streets? Seeing people get jumped after school?
In addition to the external trauma, I dealt with personal demons. I was fat. I was Black. He didn't make me light-skinned, tall or thin. I had no money for school pictures or trips to the mall with my friends. To the boys, I was drop dead ugly. A fat, Black monster who had absolutely no intrinsic value.
Pray to God? *chuckles* For what?
By 21 years of age, I believed I alone had changed all of that. I had single-handedly righted all of the wrongs He forced on me. I was running a successful child care business. I had married her father--we weren't going to be statistics for people to cluck their tongues at. No honey. Nope. I could buy what I pleased. New furniture, expensive art work, lavish meals, and all the pretty clothes I never had growing up. Who could laugh at me now? Nobody.
No, I didn't need God. He didn't need me either. At that time, I had agreed to stay out of His lane and He'd stay out of mine. I had no use for God. That is...until autism. Even then, I didn't go to the alter willingly. If anything, her condition made me hate Him even more.
Seven years after the journey to North Carolina, I came home from work to discover Isis lying in bed, unresponsive. I called to her to wake up. When she opened her eyes, clear liquid began running from her mouth.
I shook her to wake her up. Nothing. I called to her. Nothing. I tried to get her to sit up and she slid out of the bed. She was dead weight. I couldn't lift her. Couldn't move her.
I quickly dialed 911 and screamed into the phone I couldn't wake her up. The 911 operator was very patient with me. He tried to keep me calm, yet I was going crazy. Her breathing was shallow and I knew something was very wrong. He kept asking me questions I had no answers to.
Finally, he dispatched an ambulance. My mother wasn't able to tell me what happened. She told me Isis had laid down at noon and hadn't got back up. That was very unusual for Isis. She never stops moving.
It was 5:30pm when I arrived home. That means she had lain there for hours. Was she going to die? That kept running through my mind. Lord, are you going to take my daughter after all this time we've spent on this journey?
All the sleepless nights (until recently, Isis was an insomniac) where I still had to get up and go to work operating on 2-3 hours of sleep every day. All the trips to the ER and ICU for seizures over the years. All these bleak years without being in the presence of my family and friends back in Ohio.
All the bull**** I took on my job just to ensure she'd have a roof over her head and could eat. Watching my friends earn graduate degrees while I assisted her with brushing her teeth and driving her to doctor's appointments. Is this how its going to end??
The paramedics came and (thank God) were very kind to us. They also kept trying to calm me down, yet I couldn't see reason. Isis's fight has been my LIFE for years. It is all I know.
Okay, she's going to see this doctor today to discover why she's having fits of rage.
Let me make sure she's on the right medications to manage her seizures.
Today, I have to find the right staff to care for her needs who won't look at her as a paycheck.
What about all the nights I stared out of the window, unable to share how it felt to live with autism to people who had no clue about or interest in the subject?
This life has NOT been easy.
I've had to watch her grow up without slumber parties and invites to birthday parties. There has been no excitement about concert tickets. No sports teams for her to play on. I've never even received a Christmas list for Santa.
This is how she's going out of this world? After everything we've endured, Lord? After I finally trust You after years of not wanting to? You're taking her now??
I was UPSET.
We arrived at the hospital and she had a stellar nurse and nurse practitioner managing her care. They ran tests and told me if she didn't become responsive by 1am, they were going to transport her to Duke Hospital.
In 2018, she had become unresponsive and was life-flighted to Duke. I completely lost it. My church family came to comfort me and stayed with me until they placed her on the helicopter. One of my church sisters drove my car to the hospital. There was no COVID-19 then. That was a time you could physically lean on others without worrying about contracting an illness that could kill you.
"This time," I told myself, "you will not panic. This time, we will pray and we will believe that no weapon formed against Isis will prosper." I then played "Jesus Will" for her on my phone. She responded a bit, then quickly closed her eyes.
I kept singing. Continued talking to her, reassuring her. I let her know I was there and I wouldn't leave her. I refused to believe she would die. I could not and cannot imagine my life without Isis in it.
I had no time to think about "God's will." All I could think about was how I'd happily endure one more sleepless night if He kept her alive. He did and I was able to bring her home. I cannot say things have become easier. They haven't. Every day brings its own unique struggles with autism. On some days, I'm so frustrated with her, I can't wait to go to sleep and get some rest.
Rest isn't something I take for granted. I never sleep easy for I'm always listening for the alarm alerting me when she's in the laundry room at night. I then get up and redirect her back to her room so she doesn't run out of the house. I get tired of doorknob covers and remove them if I'm at home for long periods of time. Still..I listen...
Autism doesn't allow you to let your guard down. Ever. You must always be watchful. Alert. Your senses are heightened for at any time, something could go wrong. Yet, when I look at her...I now see so much more than the struggle. I see the strength behind her eyes. I see the joy she possesses just to be alive. There is so much she lacks in her young life.
Yet she GIVES to people. She gives joy. She gives hope. She gives laughter and dancing. That lightening watt smile inspires me to dream big on my darkest days. I am in awe of her ability to get up and face every day knowing she doesn't speak (often), she doesn't have friends, she is unable to care for herself and STILL she smiles the brightest of smiles. She smiles from the heart. God...I don't think I could ever exhibit that kind of strength. I'd be far too bitter to walk in her shoes.
When I came home and found her unresponsive, my entire world stood still. For Isis, it is different. No matter what comes her way, her world never stops moving. Even when I thought she was leaving me, she was still moving in her world. I may have been sitting on the sidelines, yet she is the GAME. She instructs ME about the true meaning of life. It is not the other way around. Isis knows how to praise the Lord. This is something I've never taught her to do.
Life is not an accumulation of the deeds you do for others. It is the impact your words or actions have on them. While I was playing "Jesus Will" she was dancing on a stage I could not see, in front of a Moon lodged in a sky hidden from my view.
There are places she goes (mentally) I am not allowed access to. It is there where I believe she receives enough strength to return to this Earth and LIVE as strongly and bravely as she knows how.
The day my Earth stood still, I learned she is not mine to keep. She is NOT a weakling. She is not a liability or someone to be pitied or ridiculed. She was sent here not for me to simply to take care of. She was brought into my life to show me, strength is so much more than lacking verbal communication or socialization. True strength is surviving the odds when everything--even the longevity of your life is stacked against you.
I am in awe of her. I am humbled.
Without a single, spoken word, she has taught me, my world could never stand still. It is TOO strong. It is unmovable. Stalwart. And one day, my Earth will be free. Yes, one day, my Isis will be free. Who is able to, including myself, stand in the way of that?