“I remember vividly the first time Anna opened her eyes. She stared with such intent that I couldn’t bring myself to look away. The swelling from her eye lids had finally gone, and she opened her eyes and stared directly at me. I get mesmerized by the beauty in her skin. I know she was made for something special.”
‘This is when my daughter is most beautiful, covered in layers of extra skin. Celebrate her, instead of giving me pity.’: Mom of daughter with Harlequin Ichthyosis wishes people would ‘stare at her beauty’ instead of ‘hiding their stares’
‘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.”
‘He is broken and breaking,’ the doctors said. ‘No hope. Always fatal. It would be kinder to terminate,’ they tell his mom and dad.’: Newborn with Brittle Bone Disease diagnosis defies the odds to become family’s ‘fighter’
“To us, there was never a question. In room 117, he came into this world. Crying, alive, and doing it on his own! The doctors were wrong. Was he perfect? No, he was perfectly imperfect, and he was HERE. Alive, and a fighter.”
‘No eyebrows and eyelashes,’ she said. I hadn’t noticed his lack of hair. She ran her hand across his sweet face. There was a concern.’: Mom learns of son’s rare CFC syndrome disorder, but keeps ‘pushing forward’
“Our midwife came in and hugged me. ‘How are y’all doing?,’ she asked. It was all too much. What did she mean by ‘abnormalities?’ I stopped her and asked. That’s when the rest of the conversation disappeared from my memory. I would NEVER let this define Nolan.”
‘He opened his eyes, and held my hand. ‘I love you too, but this is ridiculous.’ He proceeded to remove his oxygen mask. It was such a Dan thing to do, to choose his time.’
“‘How did you meet Becca?’ I was sitting with my nose in a book when he plopped himself down. ‘Hi, my name is Dan,’ he said, matter-of-factly. I will never forget that night. Little did I know – he’d become my future husband. He passed away just 16 days after we said ‘I do.'”
‘I’ve never had real parents before. I’ve waited my entire life to be treated the way y’all treat me.’ Couple adopts 18-year-old who was ‘abandoned by his birth mother with no name’
“‘So you are the people that want teenagers… are you crazy?’ I said, ‘Something like that.’ She replied, ‘Well, I got a phone call in your driveway for a 16-year-old male who needs a home by tonight.’ I told her, ‘Bring him home.’ My husband looked at me like I was crazy. But he agreed. ‘She’s right, bring him home.’”
‘My mom rushed in shouting, ‘Get up! Get up! I need you to keep your dad from getting out of bed.’ I sprinted to their room. ‘911? This must be serious! My mom is running, she never runs!’
“My dad was a zombie. He groaned this horrendous noise. As tears rushed down my cheeks, I ran over. There was a surprise guest waiting to pick me up. ‘They are not sure your mom is going to make it,’ he said. ‘But everyone said it wouldn’t be like my dad!,’ was all I kept repeating.”
‘I rushed to the hospital. ‘I’ve never seen anything like this,’ the surgeon said. Our pregnancy checkup had gone well. There was never a reason to believe something was wrong. Our excitement turned to disbelief.’
“Her skin was pulled so tightly that her eyelids had flipped inside out. We were informed her limbs could suddenly detach on their own. Every day, we faced a new challenge.”
‘I didn’t cry. I didn’t panic. The adrenaline made me clear headed. He was so incredibly wrong. Avery’s condition was much more complicated than any of the photos led us to believe.’
“He left the room for 45 minutes while I chatted with my mom, who had come to the appointment just for fun. We were unaware as the minutes ticked by, the doctor sat calling other specialists, having only diagnosed ONE other baby with this condition in his entire career.”
‘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.”
