‘I was prepared for surgery. Panic took over. I counted the tiles on the floor to keep from having a major panic attack. All I could think about were my two sweet babies at home. 3. 2. 1…and I was asleep.’

“It was a quiet dinner; not many words were exchanged. We just sat together and acknowledged what was coming. He held my hand and made sure I drank and ate whatever I wanted. When we were done, I went home to feelings of intense physical pain. I didn’t want to go to the ER. I just had to wait.”

‘I looked straight at my husband. ‘Why isn’t he crying?’ He was like a wet sponge. Within seconds, he coded blue.’: Mom births baby with centronuclear myopathy, ‘I will do everything in my power to give him a full, happy life’

“My husband gripped my hand firmly and hugged me. ‘Please take care of our boy. Do anything you need to make sure he’s going to be ok.’ I reached out to hold his little hand. He couldn’t even grip it. His eyes were unable to open. He couldn’t close his mouth. He just lay there. The geneticist told us, ‘These types of cases very rarely live to see their 6-month birthday.’ He then shook my hand and left. I was in literaly hell.”

‘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.’: Parents shocked by daughter’s Cornelia De Lange Syndrome diagnosis

“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.”

‘He locked me in the basement for days. I had asked him to help with baths for our kids. Then he took his own life.’: Woman reclaims self-worth after husbands’ suicide

“I kept wondering how I would get out. He must have decided the kids were too much to handle on his own. I sat in ICU while he was declared brain dead and thought about everything that happened. I felt sadness, anger, shock. The biggest emotion I felt was relief. I no longer had to fight to be respected. I felt free.”

‘She even asked, ‘Do you still want to proceed with the pregnancy?’ She told us, ‘he could have major health issues he’ll have to ‘deal’ with as he grows up.’

“Now when I think back to that moment, I can’t help but wonder why she didn’t tell us just how much joy and happiness Asher would bring us. Or how much closer our family would be because of him. Why didn’t she tell us it would be a HAPPY ending, and that Asher would change the world?”

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