Louder Than Words

A Mother’s Journey in Healing Autism - Chapter 1

By Jenny McCarthy

The moment I opened my eyes that morning, I had an uncomfortable feeling. It was as if my soul had the flu. I hurt inside, but I knew I wasn’t getting sick, so I got out of bed and shook it off as I shuffled into the kitchen for some coffee. My mom was in town and already enjoying her morning brew. I always wished she could live in Los Angeles with me, but she was still a full-time custodian back in Chicago, and retirement for her still seemed far away. I enjoyed seeing her sweet smile and treasured every minute I got to spend with her. I was glad my son, Evan, was sleeping a little late this morning so I had time to catch up with her on all the usual gossip that was going on in my old neighbourhood. As I took a moment to enjoy my first sip of coffee, I heard a voice in my head. It said, “Evan never sleeps this late.”
I stopped midsip and looked at the clock. The voice was right. Evan always woke up at seven A.M. almost to the second, and it was seven forty-five. I put down my coffee and told my mom I was going to check on him. As I walked down the hall, that sick feeling in my soul started up again. As I got closer to his room, my heart started beating fast. I couldn’t understand what was going on. I started running toward his room and threw open his door. The sound I heard will be imprinted on my soul forever: my son struggling to breathe. I ran to the crib and saw my son fighting to take in air. I grabbed him and started screaming at the top of my lungs, “Something is wrong with Evan. Oh my God, help me!”
I ran his limp body into the living room which his father, John, leaped to call 911. I laid Evan down in the living room and ripped off all his clothes. My mother was screaming while Evan convulsed and wheezed. I looked into his eyes, which were wide open, and saw that until one pupil was dilated and the other was small. I kept shouting, “What’s wrong with him? What’s wrong with him?”
I didn’t know what to do. His skin looked white, and his lips were no longer rosy pink. I put my lips next to his ear and said, “Stay with me, baby, stay with me. Mama’s here.” Thoughts of having a brain-damaged child flew through my head. I feared I would never again see him do all his cute little things. I wanted Evan back. I wanted this to stop.
Finally, after the longest fourteen minutes in my life, I saw the paramedics casually walking up my driveway. I ran outside and screamed, “Don’t fucking walk. Get over here, run!”
They picked up the pace but began to talk about my son casually, as if they were at the office watercooler. I head one of them say “seizure,” and that didn’t make sense. Don’t seizures last only a minute or so? I didn’t know how long Evan had been seizing when I found him, but he had been seizing the entire fifteen minutes it took the paramedics to get here. That would be one hell of a seizure. There was no history of seizures in our family. I was confused.
They had a hard time getting an IV in him because his body was convulsing. I kept yelling at the paramedics to make it stop. I saw the look on John’s face and saw how scared he was, too. After a few failed attempts, they got the needle in Evan’s vein and began to inject him with some fluid. Moments later, his body stopped convulsing, and his breathing went back to normal. He was now unconscious. I stood there, numb. One of the paramedics looked at me and said, “Who’s coming with us in the ambulance? We can only fit one.”
I quickly replied, “Me.”
There was no time for arguing with John as to who got to sit in the ambulance. I was grateful he didn’t put up a fight. He quickly replied, “I’ll follow behind.”
The paramedics looked down at my clothing and said, “Okay, then, why don’t you go change and meet us out at the ambulance.”
I looked down and saw I was still wearing my flannel Bugs Bunny pajamas. I replied, “I’m fine in this. Let’s go.”
A paramedic lightly took my arm and walked me into the other room. “It’s gonna take a few minutes to figure out which hospital we’re taking him to. Now go chance.” With that, I ran into my closet. I couldn’t see straight and grabbed anything that didn’t have cartoons on it. I ran back outside as they were putting Evan in the back of the ambulance. When I got in the passenger seat up front, I saw everyone on my block standing on their stoop with a hand over their mouth, shaking their head. There is nothing worse than seeing a young child being put in the back of an ambulance.
When we got on the freeway, it was bumper-to-bumper traffic. We were stuck in the worst part of morning rush hour. I kept yelling at the driver to do something, and he said there was nothing he could do. There were no shoulders on the freeway. At last I made him get off and take side streets, but they were no better. It was shocking to see how many people completely ignore an ambulance coming through; they don’t get out of the way. If I’d had a gun, I would have murdered many selfish people on the road that day. After thirty-five minutes, we arrived at the hospital. They wheeled in Evan, and the barrage of questions began.
“How old is he?”
“He’s two and a half.”
“Did your son have a temperature?”
“No, not that I’m aware of,” I replied.
“Do seizures run in the family?”
“No, not at all,” I said.
“Was he injured in any way?”
“No, I found him in his crib like this,” I said.
They began a number of tests, taking blood and checking his pupils. I sat on his bed and rubbed my hand softly over his forehead. I sang the lullaby I’d sung to him as a baby and prayed to God my boy would wake up and say, “Mama.”
John and my mother arrived. They looks on their faces were so sad. I couldn’t even imagine what I might have looked like to them. We really didn’t do much talking. We all stayed focused on the little angel lying in the bed in front of us.


Hours had passed, and still nothing from Evan. The doctor came in and said they were going to do a CAT scan to rule out a brain tumour. I shook at the possibility of a diagnosis like that. I watched as Evan was wheeled into the CAT scan room, and I waited for the results. They came back negative. Thanks God. Thank you, God. There was no tumor!
Another three hours had passed, and still nothing from my boy. I was starting to freak out because I couldn’t understand why, six hours after having a seizure, he still hadn’t opened his eyes. Another doctor came in the room and told me they wanted to test him for meningitis, since sometimes seizures and meningitis go hand in hand. After I agreed, they told me that the test would require a needle going into his spine to take out fluid. I became queasy just thinking about Evan going through anything else, but I knew it had to be done.
They usually sedate kids when they do this procedure, and since Evan was still not awake, they wanted to do it soon. But I learned that “soon” on the hospital terms can mean “on the next shift change.” After another hour of waiting, I noticed Evan’s eyes begin to flutter. Tears filled my own eyes as I whispered, “Hey, little bird, it’s Mama.”
His eyes looked stoned and vacant. Even though I was happy he was awake, my heart sank at the loss of his soul in his eyes. I wanted Evan back. I didn’t want to wait. I tried again, “Hey, little bird, it’s mama bird.”
His eyes rolled back and to the left and just stayed there. He still looked very pasty, and I shouted out to the nurses. They came over and started to shake him with a little force to bring him out of the lost world he was in.
“Hello, Evan can you see your mama? Can you look at your mama?” They shouted this umpteen times with no luck. Moments later, his eyes shut, and he was out again. I didn’t know what to make of it. Was that all I had left of my son? Even the doctors looked worried. It had been eight hours since the seizure, and he was still not alert. I prayed to God and said He could take me sooner if He would just make my boy better. I crawled into bed next to Evan and cried so hard. Once again, his eyes began to flutter. This time, though, he was making direct eye contact. He looked right into my eyes. I smiled the biggest smile I could and got right up to his face and said, “Hi Evan. It’s Mama!”
He stared at me with no response. It seemed like he did not recognize who I was. He just watched me and my movements. The doctors all came back over and were sticking lights in his eyes and poking and pinching parts of his body to see if that stimulated a response. It did. He started crying and then looked at me and said the most beautiful word I had ever heard: “Mama.” I burst into tears and hugged him. He still was not himself and couldn’t really respond to anything else, but at that moment I didn’t care. He saw me and said, “Mama.”
They did a few more stimulating tests and then told me they were ready to do the meningitis test.
“What the hell are you talking about?” I asked. “He just woke up after eight hours, and you want to poke him in the back and suck out some spinal fluid? Besides, he’s awake now, and there is no way I’m letting you sedate him after he was out for so long.”
They agreed that they wouldn’t sedate him. They had a different plan. They wanted to do the procedure on him while he was awake and alert. I started to freak out. I didn’t know what to do. It was so difficult to be in this kind of a situation, when you have to make a horrific decision with no good options. They doctors told John and me that this was the only way to be sure about meningitis, and it had to be done. We both painfully agreed. I asked John, if he would be the one to be with Evan for the procedure. One of the parents had to hold him down and not let him move at all. I knew I didn’t have the heart to see my baby get a needle jabbed into his spine; I just couldn’t do it. So I kissed Evan and handed him over to John and left the room. I ran down the hallway and sat down in a corner and buried my head in my lap and cried. I wanted this to be over. I wanted to wake up and start the day all over again. Ten minutes later, my mom picked me up off the floor and said, “It’s all over, baby. Everything went fine.”
The doctors returned with the test results and said that he did not have meningitis, but just in case they were going to give him the same HUGE antibiotic injection they would have given someone with meningitis. That didn’t make sense to me at all, but I agreed because there’s nothing wrong with getting an antibiotic when you don’t really need one, right? Wrong!


They admitted us overnight, and the next morning a young Doogie Howser neurologist came in the room to examine Evan before releasing him from the hospital. The neurologist said he’d had a febrile seizure and to rotate between Tylenol and Motrin every three hours. I stopped the neurologist mid-diagnosis and said, “I’m sorry, I thought febrile seizures happen when a child has a fever. My son no fever and wasn’t sick.” (I knew this by going online when Evan was a baby and researching fevers and how to care for them. I had come across information on febrile seizures.)
He replied, “Well, you never know – he could have been getting sick and it went away.” Okay, can you believe that explanation? “He could have been sick and it went away?” I stood there in shock and silence because I couldn’t think of a polite way to say, “You’re a fucking idiot.”
I got Evan dressed while we waited for John to pick us up. I asked John to buy Evan a big-boy bed and to destroy his crib. I never wanted to see that crib again for the rest of my life. When it was time to leave, I put Evan on his feet, and he immediately fell over. He has no sense of balance whatsoever and was even acting kooky. He didn’t talk much, and his behaviour was odd. It really worried me that he couldn’t walk in a straight line. I carried him to the car and was so relieved to be leaving the hospital and the whole horrible experience. I was bringing my boy home, and I prayed that he would be back to his old self again soon.
Walking into our house was bittersweet. I was so happy to be there but also sickened by the memory of the events that had taken place under this roof the day before. I wish I could say that this was the end and the seizure happened to be a fluke. But in fact, this was only the beginning.


From LOUDER THAN WORDS by Jenny McCarthy. Published by arrangement with Penguin Group (USA), Inc. Copyright (c) Jenny McCarthy, 2007.

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