“The evening before was normal. He was healthy and engaged. We had kids over for dinner. We all jumped on the giant trampoline. He got bossy with the other kids and started telling everyone they were playing the game wrong. I pulled him aside. I was stern with him. Too stern in hindsight. And I made him cry. It’s one of the last interactions we had, and I’ve beaten myself up for it. I can still see the tears rolling down his face. ‘But you’re not listening to me. No one listens to me.’”
‘What happened, buddy? What happened?’ I laid down next to him, held his hand. An eerie calm came over me.’: Father pleads ‘hug your kids, don’t work too late’ after regretting ‘missing out on things’ with twin son who suddenly died in his sleep
‘He was sleeping late. I became suspicious, pulled the blanket back. My son had been dead for at least 8 hours.’: Mom begs parents to spend time with children now after 8-year-old son dies in his sleep, ‘we wish we had more time’
“I started to call 911, but hung up. There was a more important call I needed to make. My husband at work. ‘Wiley’s dead.’ I couldn’t sugar coat this and didn’t have time to explain. I had approximately 4 minutes to explain to his twin brother that his best friend had died before 15 people swarmed our home. I asked him to pick a location where he would feel safe. Then, sirens.”
‘I don’t know who you are, but I know I love you.’ The mother of my son has no clue who I am.’: Father realizes he’d be raising his son ‘alone’ after wife suffers strokes that erased her memory
“When I first met my wife, it was love at first sight. Looking back on that night brings back great memories, but for my wife, those memories are gone. A quick trip to the hospital turned into an absolute nightmare. We found out she had preeclampsia, but by then, it was too late. ‘Steve, this is not easy to say, but she suffered a severe brain injury. She has lost all her memories, long and short,’ the doctor told me.”
‘My son’s tiny body was wracked with seizures. I stroked his tense, shaking face, whispering his name that he was safe.’: Mom says her son is a ‘miracle’ despite debilitating Polymicrogyria diagnosis
“This moment was one I’d never in my 33 years of anxiety imagined happening to me. I held my phone steadily pointed towards my little boy, in hopes of capturing his every move on video. I was witnessing something I’d never have wished on the worst of enemies. I searched ‘Polymicrogyria,’ ran to the toilet, threw up my breakfast and curled into a tight ball. When I tell friends my son has a condition that causes epilepsy, they respond by saying, ‘at least that is treatable.’”
‘I got caught in a snowstorm. My car tipped off a mountain road and landed in a 15-foot ravine. I grabbed my dog, zipped her in my jacket, and scrambled up a hill.’ Car accident triggers woman’s ‘tonic clonic’ seizures
“It took them two days to find my white car in all the fresh snow. Surprisingly, nothing was broken. Once thing’s seemed to be falling into place, that’s when my first seizure happened. I went face down onto the hardwood floor.”
‘Mommy, I’m scared!’ Her eyes rolled to the back of her head. I was terrified to turn around.’: Little girl survives freak accident on family Go Kart, mom claims she’s a ‘walking miracle’
“The engine shut off. My world stopped. Time stopped. Lani is on the floor, not moving. My mother is holding her scalp to her head. ‘Baby girl! Please wake up!’ Hearing the words ‘your daughter may not make it’ is the most frightening statement you can hear as a parent. I’m sure of it.”
‘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.”
‘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 excused the thought something was actually wrong. I blamed my husband’s ignorance. What do dad’s know anyway? I just held her earlier.’
“I’ll never forget. It was a breezy April afternoon. I can’t erase it from my memory– the phone call or the panicked voice on the other end. ‘There is something wrong with Avery… You need to get home.’ I had left to run a couple errands. It had been only minutes since I had last seen her.”
‘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.”
