craniosynostosis

‘What’s wrong with her? Can it be fixed?!’ I had wide-set eyes, webbed fingers. People can’t help but stare.’: Woman meets child with similar Craniofacial differences, ‘I hit the jackpot and found belonging’

“I’m a closet Web MD researcher. I typed in all the things I was born with and a term popped up. Low and behold, there were kids all around the world that looked like me! I’ve always made up wild exaggerations as to why I was born this way. Now, I need no answer. For the first time in my life, I can say, ‘Me too.'”

‘Retarded robot!’ I was pushed down a flight of stairs. Living with autism is HARD in the real world.’: Autistic woman overcomes bullying, ‘we can do anything we want, we just try 10x harder’

“Living with autism is like living in 2 different worlds. In the ‘disability world,’ people don’t judge you. You feel safe. In the ‘real world,’ all comfort is lost. I wasn’t invited to sleepovers or birthday parties. No one wanted to sit with me at lunch. I’ve had pencils, food, rubber bands thrown at me. But we are people, too. Just like everybody else. And we can do anything we set our mind to.”

‘Excuse me, my child has a question about your face.’ Others pulled their kids away like I shouldn’t be looked at.’: Woman with Craniofacial differences reminds us to use ‘kindness’ to approach uniqueness

“In middle school, kids started to stare and ask, ‘Why does your face look smooshed? What’s wrong with your nose?’ My mom would tell me how pretty I was and I’d always say, ‘You’re my mom, you have to say that.’ I’d spend so much time buying cuter clothes, different makeup, more jewelry to overshadow my face. But when I stripped it all down, my confidence was gone.”

‘What did I do wrong to cause this sweet blonde-haired, blue-eyed boy to suffer like this?’ He woke up so smiley that morning. My husband and I were silent. ‘It’s time,’ the team said. The doors shut behind him.’

“Ten minutes went by…then 30 …then 45. I was in a total panic. Instead of the screen showing he was waking up from anesthesia, it said he was still in the O.R. There was a look of concern in his surgeon’s eyes. ‘For some reason, half of his skull expanded faster than the other.'”

‘Let them just hold their baby.’ He looked different. I’m filled with gratitude for her compassion.’: Couple learns of newborn’s rare genetic syndrome, encourages others to see ‘grace’ in their journey

“As we calmly talked on that moon-lit drive, my husband said something to me I’ll never forget. He broke a short silence. ‘If anyone would be trusted with a special-needs child, it would be you. You have the grace and patience to do this.’ I’m overjoyed knowing we’ve been included in an elite club.”

‘Why isn’t she letting me see my baby? I want my baby!’ Our nurse was stalling, looking for something. But what? I felt sick.’: Mom’s newborn diagnosed with Pfeiffer Syndrome, wouldn’t ‘change her uniqueness for the world’

“As far as we were concerned, we were going to give perfect to a perfect, healthy little girl. Instead, she was born with unusually low ears, a cone-shaped head, and a squeezed brain. NO ONE at our hospital had seen anything like it. I was in shock and kept thinking, ‘Why her? How am I supposed to take care of her?!’ I didn’t feel prepared or strong enough for this. I was grieving the loss of a child, the one I thought I was having.”

 Share  Tweet