“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 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.’
‘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.’”
‘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.”
‘His teacher suddenly jumped on the desk. He started walking across each one, to make sure every single eye was on him.’
“I’ll never forget when he had them throw their history books on the ground and tell them how they got it all wrong that day, and made choices that would come back to haunt them.”
‘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.”
‘Mom! You are white and I am brown, and that means Martin made it so you could adopt me!’ He grabbed his little brother’s hand. ‘Look! Martin’s dream came true.’
“He was 4 the first time kids told him he couldn’t play with them on the playground because he was black. I wasn’t prepared for any of it.”
‘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.'”
‘The growth is very large. There’s a chance the baby may not survive.’ Right then, reality hit me. All the fear and nerves I carried through my pregnancy hit me all at once.’
“It was this second I knew, I knew something was different. Something had changed and our baby girl may not be as perfect as was earlier suggested.”
‘This is dwarfism and I’m 99% certain the result will be fatal.’ There it was. A bomb. I couldn’t breathe, I couldn’t talk, I didn’t understand at all. She was perfect.’
“As she rambled, completely ignorant of the fact I was in my own puddle of tears, she wrung her hands. It was horrible. At that point, my mother stepped in. She and my husband scooped me out of the chair and we left, never to return.”
‘Her skin hardened within seconds. After hardening, it began to split. Behind the curtain, I sensed their frantic panic. My husband’s silence scared me. He kept saying, ‘It’s bad.’
“He told me, ‘Jennie, I looked in her eyes, and she has the most beautiful soul.’ Broken is the only way to describe the feeling as they placed her in my arms. They had never seen anything like this. She was fine; everything was perfect, and then it wasn’t — just like that.”
