feeding tube

‘I kept asking, ‘Is my baby okay? Why has no one updated me yet?’ I don’t want to touch him. I don’t want to even look at him.’: Baby born with Cornelia de Lange Syndrome, ‘They avoid us like the plague’

“‘Termination should be strongly considered,’ was rubbed into my face. For 2 weeks after his birth, no one but myself and my husband were allowed to see Preston due to isolation. Our 2-year-old daughter wasn’t allowed to meet her new little brother. I didn’t ever go a day without having hope.”

‘She wasn’t getting enough air. She was almost gasping and was quite purple. It was pure torture.’: Woman gives birth to baby girl with Treacher Collins Syndrome, ‘Her disability won’t hold her down’

“I noticed her ear looked small, but I chalked it up to the typical squishiness of a newborn. ‘So what? What is the point of showing me her differences?’ She has underdeveloped ears, cheekbones, and jaw that make her appear a little different than most of us. I just stared at her in awe, with nothing but love and admiration.”

‘Out of left field, the man asked, ‘Ma’am, will she ever be normal?’ Fighting back tears, my 5-year-old climbed on A.J.’s wheelchair and look him straight in the eye.’: Woman adopts child with cerebral palsy, ‘Life has never felt more complete’

“I got the phone call that would change our lives forever. ‘Her mother was found deceased this morning.’ We asked, ‘How would y’all feel if A.J. stayed with us forever?’ The two girls’ bond is like I have never seen. She doesn’t see A.J as ‘different,’ she just sees her baby sister. I don’t think any of us could imagine life without her.”

‘You had the baby 15 days ago. You’re in the hospital.’ Was he kidnapped?’: Mom births baby in medically-induced coma after frightening flu symptoms, ‘They knew I was dying’

“I remember multiple vivid dreams of violent rape. As I woke, my ‘dreams’ transitioned to reality. The sorrow I felt was indescribable. I was devastated I’d missed those precious moments after birth. I wept, begged the doctors, ‘Please downgrade me out of the ICU so I can meet my baby!’ FINALLY, after 24 days in the hospital, I met my precious son. I smelled his skin. I’d almost died, and was now reunited with him.”

‘Minutes after being born the doctors noticed my skin peeling from just being wrapped in the typical blanket they use with newborns’. Woman describes the pain of living with Recessive Dystrophic Epidermolysis Bullosa

“There’s often the misconception my illness is not a big deal and it’s ‘just a skin condition.’ If my illness was as minor as people tend to believe I wouldn’t have lost the ability to walk over the years, or my hands wouldn’t be webbing from years of scarring and friction.”

‘My heart hammering, I answered the phone. ‘It’s very serious, there’s no cure yet.’ This disease takes everything.’: Mom raises awareness about Childhood Alzheimer’s after 18-month-old diagnosed

“‘Is this a good time to talk?’ With those words, I knew it was something awful. As my daughter was giggling, bursting with love in the next room, I was learning she wouldn’t be growing up at all. I didn’t know diseases like this even existed, not to mention strike children, our child.”

‘Can I still use the tickets even though my baby passed?’ Their response: ‘No, your guest must be present.’ My heart broke into a million pieces.’: Mom loses baby girl to pneumonia, ‘She isn’t in pain, she is free’

“The day she died was the day we got the email that we had won the tickets. I asked if we could still use it for my girls, even though one was now my angel baby. It felt like the perfect thing to honor and remember her. A simple no would have been okay with me, but their words felt like a stab to the heart. The bear lost its meaning to me.”

 Share  Tweet