“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.'”
‘He was blue, and his skin was covered with deep purple spots. He wasn’t crying. The whole room was especially quiet.’
‘I walked into the NICU. Her nurse said, ‘Hey momma, I was just about to call you.’ I knew that wasn’t good. My heart started pounding. I could feel it in my ears as I choked back tears.’
“‘Am I allowed to kiss her?,’ I asked the nurse through tears. I didn’t want to leave. I cried even harder as they wheeled me out. I was frantic inside.”
‘She said they become ‘the pet of the school.’ The life I imagined crashed before me and fell to pieces. I heard the words, ‘She has characteristics of Down syndrome.’
“But then, I saw my daughter with her big marble colored eyes and blonde hair. Finally, I embraced it.”
‘The billing department doesn’t care if your baby died. The medical companies don’t care if you’re on unpaid leave because your child is a long-term patient. You still have to pay.’
“It keeps me lying awake at night, tears and stress making my heart race. I’m drowning in medical debt. And I know I’m not alone.”
‘I had fallen forward on my belly. I was placed on a gurney, in full uniform, and wheeled through the ER. ‘We should talk delivery options.’ My response? ‘Um, excuse me?’
“I could feel it all. Then the anesthesiologist said, ‘Okay, we’re putting you to sleep now.’ And for the second time that day, I blacked out. My husband’s phone showed he got the call at 10:53.”
‘Stop pushing!,’ my doctor said. ‘No time to wait. His heart rate keeps dropping with every push, I cannot let this keep happening.’
“The epidural I was given hours ago never worked, I was feeling every intense pain throughout my labor. I clung to his words.”
‘When I was 16 years old, I weighed 130 pounds. I felt like a cow. My friends were much smaller, and much slimmer. I always felt so unworthy. Sloppy. Lazy. Gross.’
“No matter how hard I tried, my size 8 body never fit into their size 2 clothes. I always felt so fat. My body has changed a lot. But my thoughts on my body have not. I’m still just as harsh. This has to stop.”
‘What is wrong? Is something wrong?’ He didn’t answer me. ‘Chad, seriously, tell me what’s wrong.’ He closed his eyes, took a deep breath and leaned in.’
“He shot back with a look on his face I had never seen before. Fear, maybe. Shock. Panic. Oh God, what was it? The blood left his face. He was pale. Almost confused.”
‘My eyes darted back and forth as I tried to make sense of where I was. As the fog lifted inside my head, I vaguely remembered bits and pieces of the day before, events that changed my life.’
“While I lay on the operating table, my husband sat in the waiting room, wondering if he would lose all three children and his wife in one day. As he overheard the doctors, one word stood out.”
‘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.”
