feeding tube

‘The neurologist called. ‘I’m 90% sure your son has Congenital Disorder of Glycosylation. Do not google it.’: Special needs mom urges, ‘Life can be beautiful, even when it doesn’t go as planned’

“Christopher is 7 years old and cannot sit on his own without falling over. He can’t walk and uses a wheelchair. He hasn’t had food orally for over 5 years, and is fed with a GJ tube. He has never told me he loves me, or said a single word. And I have learned that even without words, his story is going to be a beautiful one.”

‘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.”

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