Hypotonia

Mom on the left takes a photo with her two daughters, on the right mom takes a photo of her youngest daughter with Coffin-Siris Syndrome

‘I spent the first year of my child’s life blaming myself, not wanting my child to have ‘special needs.’: Mom to daughter with Coffin-Siris Syndrome urges ‘you are your child’s best advocate’

“When she was losing weight, it was because I tried to force breastfeeding too long. When she couldn’t bring her hands together, it was because I had swaddled her longer than I should’ve. When she couldn’t crawl, it was because I didn’t do enough tummy time.”

‘Why is your wife crying? Not everyone gets to have a perfect baby,’ the nurse said. We were shocked. I just wanted to be told everything was okay.’: Mom to son with Down syndrome says she’s in ‘the luckiest club there is’

“I heard whisperings at my bedside. I asked my husband, ‘Did you just hear what I heard? I think something is wrong with the baby.’ They looked little Henrik up and down, lifting him and setting him back down into the bassinet. I stared blankly in disbelief as my husband covered his eyes. ‘What does THAT mean?’ We couldn’t even form words. ‘This is very, very serious.'”

‘Staring into my Poppy’s eyes, I asked him to pick a baby for us when he got to heaven. I kissed his cheek and whispered in his ear, ‘Make it a girl.’: Mom births baby with Spina Bifida, ‘She does things in her own way’

“One morning, a woman came in swiftly wearing a leopard blouse and clicking her heels. She walked right over to me. ‘Sorry for the bad news,’ she said and walked away. What bad news?! I wasn’t informed of any bad news! I broke out into tears as she exited. During the gender reveal, I was hiding this secret while watching my mom cut into our cake. I was giving them a broken baby.”

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