“After sharing concerns with my husband, I told her doctors I thought something was wrong. They blamed her blindness. I insisted it was deeper than that. She slept all the time, I had to wake her to nurse her, and I’d never seen her smile. Crazy, I know.”

‘Your baby doesn’t have eyes.’ What do you mean she doesn’t have eyes?! I know people are born blind, but to actually not have eyes seemed impossible to wrap my brain around.’

‘It’s a bambino!’ I was like, ‘what??’ All I saw was all the HAIR she had! Then 5 seconds later, she was whisked way to the NICU.’
“When I first looked at her, I knew something was different. I asked my husband, ‘What did you think when you went to see her?’ He replied, ‘She’s just so perfect and beautiful.’ I couldn’t shake what was in the back of my mind.”

‘Don’t worry, when he’s here you can wrap him in a blanket and nobody will ever know he’s different.’ That’s all it took for the tears to start. This was all too much.’
“‘The only thing I worry about is his size,’ I said, smiling. I was terrified of having to push out anything bigger than 8 pounds. How ironic now, come to think of it. They asked me what I already knew about his condition. Nothing, I realized I knew absolutely nothing.”

‘Mom, that boy said Judah looked weird.’ I knew. I saw. I could feel the little boy boring holes into my 4-year-old, who has Down syndrome.’
“I watched him turn away and mention my son to his dad. That’s the first mistake we both made. We both chose to turn away.”

‘Babe, while you were gone, they found some things wrong with the baby.’ I had no idea how I was going to tell him. He missed it all. He had no clue.’
“Brian watched from a phone screen 3,000 miles away as our darling daughter Adaline drew her first breath. Quietly she came, and our lives were never the same.”

‘I sat on the line stunned. ‘There are only 34 cases ever on record. He is as rare as they come.’ I peered in at him and thought, they were wrong, somehow this was just a fluke.’
“I was anxious to make my way to the NICU. I walked into the very room our daughter had been in and instantly knew our situation was much different than before. The doctor didn’t waste a minute of my time trying to sugar coat the situation.”

‘Her piercing blue eyes were mesmerizing. ‘This will be too much for your family to handle,’ we heard. ‘She will live in total darkness. Total silence.’
“We woke to a text. These people helping us couldn’t understand how we could move forward with adoption until we were certain SHE WOULD LIVE. I responded verbatim, ‘WE WANT THIS GIRL NO MATTER WHAT.’”

‘That’s not exactly true.’ My heart sank faster than I ever thought possible. All that mattered to us was he was here – he was crying – he was alive – he was PERFECT – and he was ours.’
“We found out we were having a boy – and were thrilled. Then came the dreaded sentence. ‘I think the doctor is going to want to discuss things on the ultrasound with you.’ And there you have it – the last word in the universe we ever would have guessed we would hear.”

‘He was blue, and his skin was covered with deep purple spots. He wasn’t crying. The whole room was especially quiet.’
“They had no clue what was going on with his skin. They thought maybe I had passed on an infection. Our nurse crouched down next to me. ‘This is going to get better. We will get through this.'”

‘I asked my husband if he had it. He said, ‘Yes.’ One nurse even said, ‘I think he has what mommy has!’ He had white chunks of skin around his fingers and toes, and was bright red.’
“I looked at the ultrasound picture with his hand balled up in a fist. In that moment, I knew. I felt guilty that my choice to potentially pass this on could cause one of my children to have a less than perfect life.”