“I had never been a ‘sick’ person. I had only gone to the hospital for labor. I didn’t even have a cavity! Now, my kids were crying. My husband was on the phone with 911. I froze. ‘It’s happening again,’ I screamed. My arm moved wildly on its own. Everyone began to scramble.”
‘Life changed in a heartbeat. I dropped to my knees on the kitchen rug, a horrible sensation ripping through my nerves. My skin felt like it was trying to harness golf balls wildly in my veins.’
‘My head and spine rolled. The playground monitor watched me fall off the monkey bars. Kids called me ‘freak’. I didn’t see my spine tic as a problem, but her concern made realize something was wrong.’
“I could hear unkind comments coming from behind and in front of me. I broke down crying and tried to get away as fast as I could. When I got the news, it was a relief to say, ‘This isn’t me trying to be annoying.’ It was uncontrollable.”
‘He’s not breathing!’ His entire arm was jerking. What was going on?! ‘He was just screaming! How could he not be breathing?’ Then my phone rang.’
“He was admitted to the hospital ‘just to do some routine stuff’ since he was young for such a high fever. I didn’t love the idea, but I was willing to do whatever was needed. Then something unexpected happened. Trevor started screaming. The nurse reached for the ‘Code Blue’ button on the wall.”
‘Her oxygen levels dropped. She had blisters and dark swirls all over her body. Ever seen a movie where someone gets devastating news and collapses down a wall? That was me.’
“After about 8 hours of not being able to get our 5-day old daughter to eat, we took her to the emergency room. ‘She’s fine,’ they told me again. I kissed my 2-year-old. ‘I’ll be back as soon as I can. I’m just going to go make sure your sister is okay.’”
‘I woke up with the worst pain. ‘They’re just headaches,’ I said. Something in my mom’s heart kept pushing. ‘There’s something in your brain,’ the doctor said. I was 11, and so confused.’
“I was rushed to the PICU. I tried to stay calm, but I was terrified. I couldn’t help but think, ‘How could I have done anything wrong to deserve this?’ I hid everything behind a smile, but I knew my life would never be ‘normal’ again.”
‘I knew something was very wrong but no one would listen to me. ‘You’re just depressed. Take some Zoloft and meditate. Everybody deals with pain. Take some Advil and suck it up.’
“‘She’s gonna need to open her eyes, sit up, and be able to answer my questions or we’re obligated to take her to the hospital,’ the other EMT chimes in, as if I have a choice in the matter. A group of my friends are standing right outside the door, praying for divine intervention.”
‘I was at the subway station. My boyfriend heard a loud crash. Things went black. I awoke to an EMT standing over me. ‘Do you know someone who has it?’ I nodded.’
“Instead of contacting my mom, I decided to wait. ‘You have 24 hours to cry about the situation.’ All I could think was, ‘WHY?’ I sat in disbelief. Something inside me felt like I would be doing everyone a favor.”
‘What did I do wrong to cause this sweet blonde-haired, blue-eyed boy to suffer like this?’ He woke up so smiley that morning. My husband and I were silent. ‘It’s time,’ the team said. The doors shut behind him.’
“Ten minutes went by…then 30 …then 45. I was in a total panic. Instead of the screen showing he was waking up from anesthesia, it said he was still in the O.R. There was a look of concern in his surgeon’s eyes. ‘For some reason, half of his skull expanded faster than the other.'”
‘I turned to the nurse, ‘If you won’t take me to see her, I will crawl if I have to.’ My best friend looked at the nurse and said ‘You might want to read her chart, she’s not kidding.’
“When everyone around me was telling me to give up, I took a chance. I did what every 21st century parent does, and what every doctor tells you not to do and I googled it. I found cannabis.”
‘Get here now! It’s bad, it’s real bad.’ I jumped out of bed and yelled, ‘We have to go now! Something has happened.’ I knelt down beside him. ‘I am so sorry son, I love you so much Joshua.’
“My fiancé hardly had the car in park. I jumped out and ran down the driveway toward my son. Before I could get to Josh, two police officers held me back. I cried out, ‘My baby, my baby, I want my baby!’ At that moment, I knew my worst nightmare had come true. My precious son was gone in a blink of an eye.”
