“The surgeon called from the operating room. ‘I need you to come downstairs immediately, I found something.’ No other context. No details. Just a call from the surgeon who’d found something so alarming he needed to talk WHILE our baby was open on the operating table. She wasn’t moving. Her belly was huge and so stretched out you could see every vein. Everything came crumbling down in an instant. With mascara-stained tears streaming down my cheek, I held on to her a little tighter, not knowing if she would make it.”
‘Her intestines are twisted like sheets in an overstuffed washing machine.’ You could cut the silence in the room with a knife.’: Mom survives nearly-fatal child birth, daughter with Functional Short Bowel Syndrome beats death multiple times
‘I went on countless job interviews, but I didn’t ‘look the part.’ The second they saw me, the whole vibe changed.’: Woman with Nemaline Rod Myopathy embraces disability, ‘I want to be seen for the smart, fun, boss babe that I am’
“After graduation, I was excited to take on the world! That feeling quickly died. Every employer assumed I wasn’t qualified. I didn’t have a specific ‘look,’ or I didn’t fit the part. I realized I didn’t want to work someplace where I would be judged by the way I look, not by the work I contribute. Appearances matter, but they matter even more when you’re disabled. And the hardest part about being disabled isn’t being disabled. It’s fighting to be seen as an equal.”
‘Yellow!’ Micah pointed to an adorable little chick with a big smile. Then, he spiked a 106 fever.’: Woman loses 3-year-old to Arthritis, ‘I am a mother, that will never change with time, space, or death’
“‘Are you SURE?’ I asked the doc, reading the report. ‘It would be like being struck by lightening TWICE. He’s fine.’ They were wrong. He was SICK. Sicker than any baby I’d seen. I walked into the PICU bathroom, shut the door. I screamed, moaned, punched the mirror, and cried the guttural tears of a mother who already knew how the story ends, because she’d lived it before. I was reliving my worst nightmare.”
‘The doctor sat down and began to cry. ‘It could be nothing,’ she said. But we knew it was something.’: Mom describes shock of finding out her son’s ‘life-changing’ genetic disease
“One of the nurses came in the room and said to me, ‘If you guys were my kids, I would tell you to go straight to the children’s hospital. Something is wrong with your baby.”
‘She’s beautiful, but something’s wrong with her heart.’ HOW? I was only 23! I clapped my hands over my face and WEPT.’: Mom births baby with Truncus Arteriosu, says motherhood is all about ‘rolling with the punches’
“My husband drove me down to the waterfront, my idea of motherhood now a pile of dust and rubble. Was I really made for this? We’d both been crying for several hours. He opened the envelope. ‘It’s a girl!’ his voice cracked. When they wheeled her away, we gave our final kisses. No matter how long she was with us, Shirley was a gift.”
‘I was 13 hours away with $1.32 in my account. Tears in my eyes, I gently opened the door. There was a look of shock on her face. ‘How did you get here?!’
“I wrote, ‘My mom is dying in hospice care and I feel guilty every day I’m not there sitting by her side.’ I awoke to something so unexpected. ‘Alex! Oh my god, Alex!’”
‘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.’”
‘Take your shirt off!’ Instead of helping her, they pointed or laughed. She said, ‘I don’t want him to feel how he made me feel.’
“Her spine was collapsing. Her ‘best friend’ no longer wanted to talk to her. She lost the ability to sit up, walk, or do anything herself.”
‘And there’s the other one!’ she said. Another blob appeared. My husband and I were shocked. I broke out in a huge smile. ‘Oh my gosh, oh my gosh!’
“I’d never seen my husband speechless until that moment. I remember being terrified, but I assumed everything would end up okay. These sorts of terrible things happened to ‘other people,’ and surely not me.”
‘My husband was fuming. I was BORN to be her mom. She is here to prove everyone wrong.’: Daughter diagnosed with ‘extremely rare condition’ Lissencephaly, family ‘cheering for her every step of the way’
“In the coldest bedside manner alive, the doctor said, ‘There is no cure. If she lives, she’ll stop mentally developing at 2 months old. Here’s some paperwork. Any questions?’ I stared at him, my body slowly over heating. I told my husband to get me out of there. I looked up at the sky and thought, ‘Well, here we go.’”
