“His body was saying, ‘This is too much. I can’t fight anymore.’”
‘I took my baby home to die. ‘There’s nothing more we can do.’ We were on our own.’: Single mom loses son to epilepsy, hydrocephaly, ‘I am brokenhearted that he’s not with me, but I am at peace’
‘Jack was screaming for over 10 hours, no tears. ‘Did you forget how to hold a baby?’ The nurse took him out of my arms.’: Mom advocates for son with rare epilepsy after multiple misdiagnoses
“A tight smile on my face and a pang in my heart, I joked along, but something felt off. His painful cries stopped, and his little body became rigid with eyes that would no longer focus. I was done trying to not be the overly sensitive mom – it was time to sound some alarms. After only knowing our son for 5 short days, he was taken away on a helicopter in critical condition.”
‘There was no sugar-coating it. Her brain was bleeding. We we warned, ‘She may end up blind, deaf, or mute.’: Daughter born with hydrocephalus, ‘I find joy in every single second’
“She’s had 100 brain surgeries. I’ve sat alone in a waiting room in the middle of the night after signing consent forms for emergency surgery, not knowing how she was going to be when she made it out. If she made it out. But it’s obvious she’s not giving up.”
‘My psychiatrist called to ask about Mother’s Day. ‘Can we just skip it this year?’ My mom’s response was an emphatic, ‘No!’: Mom who lost daughter to epilepsy says ‘happy Mother’s Day to all, we’re with you’
“Last year my mother and mother-in-law spent a combined eight weeks living with my family as we prepared for the end of my daughter’s life and grieved her afterward. I’ll survive the day, because it is just that, one day and I’ve survived much worse.”
‘What’s happening to our baby?’ His eyes pinning, we watched in horror as he became unresponsive.’: Twin diagnosed with Sturge-Weber, ‘Our life is a beautiful mess just like everyone else’s’
“His seizures came ROARING back with a vengeance. We unwillingly checked back into hell. We sat by our baby boy’s bedside in a state of utter despair, as he was intubated and unconscious.”
‘The Great Pause,’ I’ve heard it called. I’d been making emotional progress. Then Covid happened.’: Mom says ‘forget your 5-year plan’ after losing daughter to epilepsy
“It’s been six months since my daughter died.”
‘You’re lucky he didn’t die in his sleep. He is 1 in 6 billion and will be bedridden for life.’ I clenched my husband’s hand in disbelief, tears welling in my eyes.’: Mom praises medically complex son, ‘He is our little heart warrior’
“He was lifeless and pale. The clock was ticking. All we could do was pray and hold his little hand. Sitting beside his hospital bed, 3 genetic doctors in white coats rushed in. ‘Can we go to a private room to talk?’ I walked down the hallway in a fog. ‘We were wrong. It’s severe. He will never live independently on his own.’ Soon after, he had a stroke and began seizing up. This was the worst-case scenario. It was really happening.”
‘Beth, there’s police at your house. Are you ok?’ I found my son handcuffed to a hospital bed, drugged.’: Mom advocates for son with severe autism, PANDAS, ‘Don’t ever give up on your child’
“I locked my daughter in her room. ‘He’s gonna get me. Mama, save me.’ He bit my arms, hands, and chest, drawing blood with each bite. I begged him to stop. It was too late. He was not him. I fell beside the couch. I felt like a battered wife, except it was my child. My child who, after a rage, would cry and kiss me, looking at me with big, sad eyes, begging me to ‘fix it.’ I wasn’t mad at him. I was completely broken.”
‘What’s wrong with me?’ I burst into tears. My ovaries were that of a 40-year-old. I longed so desperately to make my sweet girl a big sister.’: Mom births baby with epilepsy, autism, then miracle baby after battling endometriosis
“Our thoughts of having a second child were buried under years of trauma. Until one day. ‘Kylee, I want a baby.’ That sparked something inside me I never thought would happen again. 4 days after my transfer, I took a pregnancy test expecting nothing. There was a very faint second line. ‘This has to be a fluke.’ My heart began racing. A different kind of panic ensued.”
‘Are you driving?’ she asked, ‘You might want to pull over.’: Self-proclaimed ‘cocky millennial’ mom admits she was ‘scared, angry’ after daughter’s epilepsy diagnosis
“She wasn’t acting like other 2-year-olds we knew. Everyone told me I was crazy, but there was something wrong. I told her I pulled over, but kept driving. ‘I think your daughter is having seizures. I think she has epilepsy.’ There was a long pause as I pulled over, no longer cocky and full of myself. ‘Excuse me?’ I replied. I don’t remember the rest of the conversation.”
