“It felt like months of tug-of-war. ’The judge is refusing. You need to be in Texas by Friday.’ Through tears, I called my husband. ‘Looks like we’re headed to Texas.’ I just wanted my boy.”
‘I can have him ready as soon as I need to.’ With shaking knees and wet palms, we froze. Our family was being built.’: Couple adopts two boys from foster care, ‘It was a very easy yes’
‘Why isn’t he growing right? I’d never seen a baby so small. They painted a bleak and miserable life for my son.’: Woman births baby with Prader Willi Syndrome, ‘I refuse to let it define him’
“He had tubes all over his body and when they put him on my chest, I barely felt the weight of him. I was faced with a baby labeled ‘Failure to Thrive.’ He looked strange to me. He was unlike any other baby I had ever seen.”
‘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.”
‘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.”
‘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.’”
