“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.”
‘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!’
‘I’ll forever remember that moment. The doctor told me to get my camera out and take a picture. And then everything became quiet. The world stopped, right before chaos erupted.’
“Doctors had never seen anything like it. Harper was encased in a hard, thick skin, much like armor, all over her body. It was like we were sleeping walking. We needed to do something quickly.”
‘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.”
‘An airline employee quietly asked about ‘my rash,’ and if I had a letter from a doctor stating it was ‘OK for me to fly.’ I explained to him it was a genetic skin condition.’
“He walked up to talk to the crew. He also Googled it during that time. He came back and said he apologized, but we ‘wouldn’t be able to fly,’ and we ‘had to get off the plane.’”
‘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.’
“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.”
‘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.”
