“He was always sick. When the doctor was listening to his lungs, he noticed his tongue was twitching. They stuck a probe into his muscles. ’Don’t google the disease.’ Of course, I immediately googled it. I shouldn’t have.”
‘He sounded congested all the time. ‘He’s just building his immune system.’ This cold landed him in the PICU, intubated.’: Mom advocating for Spinal Muscular Atrophy says, ‘Every single thing is a battle’
‘I felt DRUNK. I had to spit in a cup two or three times daily and I could barely walk straight. ‘You have a baseball-sized tumor in your head.’: Health coach battles brain cancer and experimental surgery
“I was a complete and total workaholic-girl-boss with my own business. I started noticing headaches often and having spit-up episodes. Part of me thought it was anxiety. These episodes, I found out, were seizures.”
‘This is the first time I’ve seen something like this.’ We were starting to lose hope. What was going on with our baby?’: Couple advocates for son’s rare diagnosis, Cutis Laxa Type 3, ‘He’s a warrior’
“He was born full-term, weighing just two pounds. He gained five pounds. Then the seizures started. All we saw were tubes, PICC lines, and NG tubes. We weren’t getting any answers.”
‘Xander may only have one or two years to live.’ We were completely blindsided. I’m not supposed to outlive my son.’: Mom feels ‘helpless’ through son’s heart transplant and liver cancer, ‘I can’t give up’
“A year after his transplant, Xander started throwing up. I rushed him to the E.R. because I thought he was facing organ rejection. The words were crippling. I wanted to grab the cancer with my bare hands and fight it to death.”
‘At 18 months old, his friend said, ‘BACKPACK!’ My son was 2 and not talking. I didn’t feel like I was doing a good job.’: Mom runs marathons for Autism awareness, ‘I’ve never been running this race alone’
“I decided, ‘I’ll give him till three to see if he starts saying more words.’ We were having more meltdowns and a difficult time consoling him. Meeting all his needs became tough. I didn’t have a ‘real’ diagnosis. I started to dig.”
‘We ALWAYS stop at the toy aisle. People think I’m crazy, asking my 1-year-old if we should buy stuff. But I don’t care.’: Woman says daughter is her best friend, ‘It’s the greatest gift’
“We share lunches and cheers our drinks. We play everything, peek a boo, house, chase, and it’s the highlight of my day. I love waking up every morning, knowing she’s right next to me. I’m not ashamed to admit that she’s my best friend.”
‘How long has he been like this?’ I yelled. His temperature read 105. ‘You can’t have him,’ I said to death. ‘Not again.’: Bereaved mom describes parenting after loss during pandemic
“The doctor came in, ‘We need to run some tests.’ He doesn’t know. She died inside of ME! I was the one who could have saved her. Do you know how hard it is needing to prove to the world I can keep my children alive? ‘Please stay. Please stay,’ I whispered.”
‘She wouldn’t take a bottle or sippy cup. The nurse said, ‘That can’t be right.’ Something was wrong. This was my fault.’: Mom advocates for daughter with rare Chung-Jansen Syndrome, ‘Listen to your instincts’
“A voice inside my head was telling me something was up. She wouldn’t eat and couldn’t roll over. The doctor said, ‘She has barely grown in 4 months.’ I felt a wave of grief. I knew I had to advocate for her.”
‘I don’t know his favorite color. He can’t tell me. I’ve grieved. Imagine not being able to communicate?’: Autism mom describes highs and lows of parenting, ‘He makes me a better me’
“I was in tears during every evaluation. ‘How dare she put labels on him!’ I’m not sure if I was ignorant or in denial. Maybe both. I’ve watched his brother surpass him, and it stings.”
‘I’m here,’ she sobs. More and more it doesn’t make sense. Yet it’s all we have now.’: Woman describes caring for mother with Alzheimer’s, ‘Love doesn’t care if I understand’
“People ask, ‘What did she say?’ My response is usually, ‘I have no idea.’ Her voice whispers in my mind: ‘I’m not in my words, you won’t find me in what I say.’ It’s surprising how little it all matters.”
