“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.”
‘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
‘What’s wrong with her fingers?,’ my husband asked. ‘They look strange, but they’re perfect.’ Then he saw her toes.’: Parents surprised by daughter’s Apert Syndrome diagnosis, ‘she just wants to be loved’
“The doctor yelled to get the NICU team as soon as possible. They came in so fast we could hardly get a picture. I don’t remember anything afterwards except that my husband googled her syndrome based on her appearance, and I was left alone in the delivery room. No husband. No baby. I asked for a Diet Coke. They only had Diet Pepsi.”
‘IT’S A GIRL!’ Suddenly I hear the words, ‘What about the cleft,’ and then deafening silence.’: Mother discovers shocking diagnosis after daughter’s birth
“My baby’s face was still hidden. I shot straight up, and that’s when I saw my baby girl for the first time. The world stopped. ‘Babe look…’ All I heard was silence. ‘Babe look,’ ‘babe look.’ My mom was screaming at my husband. His eyes were glazed over. ‘Everything’s okay, she’s perfect and she’ll be okay.’”
‘As I lay on the operating table, I heard the ONE word I dreaded. They wrapped him up, brought him over. I began to sob. ‘How can my heart be rejoicing and breaking at the same time?!’
“The room began spinning. I was thrilled to have my baby but terrified by the words used to describe him. Unlike his older brother’s birth, not one person came to see him. No flowers were delivered. No one knew what to say, so they said nothing. On that day, my life became defined by two words. Before and after.”
‘He wanted me to get a second opinion. ‘Is it a boy or a girl?,’ I frantically asked. ‘Are you sure you want to know?’ ‘Yes, please tell me.’ ‘A boy, it’s a boy.’ Things like this don’t happen to people my age.’
“When our oldest son saw him, fear set in. He was scared. He loved him dearly, but seeing my son afraid of his baby brother is something I’ll never forget.”
‘There is no rush. They may never get to do this again, holding their baby like this.’ As we admired him, there was a quiet heaviness. He looked different. My husband already knew.’
“Had we delivered at a hospital, he would have been taken from me immediately. My heart also aches in pain but I could not possibly foresee what was to come.”
‘There was something wrong with his face. ‘It’s not fair! I wasn’t supposed to have a baby like THIS.’ My husband kept telling me the doctor was wrong, but I knew otherwise.’ Mom a ‘blubbering mess’ after ultrasound reveals son’s cleft lip and palatte
“I walked to the parking lot, then to my car. As soon as the door closed, and no one was watching, the tears started to flow. How could there be anything wrong with my baby?! I couldn’t even picture it. It didn’t make sense. I felt like I let everyone down.”
‘After losing twins, we thought we’d paid our dues. Our life’s suffering was now complete. We were wrong.’: Mom loses ‘rainbow baby’ with heart defects, knows she will meet him ‘in heaven’
“We were overjoyed at my pregnancy. New life was coming! But scans and tests told us it’d come with major heart defects, a missing chamber, faulty valves, and an aorta split into 2 pieces. Blindness. Deafness. A cleft lip and palate. Still, doctors were hopeful. Until they weren’t. ‘He’s a sick guy.’ I was told this in a ‘why the long face? didn’t you expect this?’ kinda way.”
‘I can’t look like this anymore!’ I begged my parents for surgery. I’d arrive a new person and no one would have anything to say about my looks anymore. I was sure this was it.’
“I returned to school after going under the knife. ‘Are you thinking about a career in porn? You look like a porn star now,’ a boy said. I was shocked. I decided it was time to finally fight back.”
‘No, this can’t be real. Not this. It isn’t fair! Hasn’t she been through enough?’ But it was real. I heard the words no parent wants to hear.’
“How did I ever think motherhood would be easy, magical, dreamy? My mind started racing with questions. I let myself wallow in self-pity for about 24 hours, and then I decided I would not give in.”
