G-tube

‘Her intestines were twisting. ‘If you don’t do it tonight, you could die. And there’s no guarantee she’ll live.’: Mom births ‘miracle’ baby with Short Bowel Syndrome, ‘She was meant to survive’

“She looked terrible. Her usually pink skin was a greyish-blue. Her belly was huge and so stretched out, you could see every vein. She wasn’t moving on the operating table. With mascara-stained tears streaming down my cheek, I held on to her a little tighter.”

‘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.”

‘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.”

 Share  Tweet