“I get a call from the geneticist. The call drops 3 separate times. The most important call of our life and I miss it. I sit and wait. My phone rings again. He says, ‘Genetics just confirmed Evie has Rett Syndrome.’ He says, ‘There’s no cure. We can’t change it. You can’t do anything.’ My heart sank. This was serious.”
‘My daughter came home from preschool different. She was biting herself. She stopped speaking, sleeping, playing with toys. I could no longer write it off.’ Mom receives Rett Syndrome diagnosis, told it’s ‘one of the most severe cases’
‘After I delivered, my doctor handed me my girl. I did not see it. In all of my medical training, I could not tell. She was the most beautiful baby I had ever seen. She was PERFECT.’
“I am a Southern girl and a doctor and I’m used to having it all together. I turned everyone away from the hospital that day, including my sister. I thought I had ruined our lives. I thought I had done something so terrible my husband and child were being punished.”
‘I have not needed a feather of my own in many years. I knew why he did.’
“I get it. I’m a lot like you, Oliver.”
‘I couldn’t process it. Twin 2 was born without an eye, ear, nostril’: Single mom ‘plunged into a pool of guilt for something I was convinced I had caused’
“When Harry was almost 3-years-old he was also diagnosed with Autism and my guilt and grief intensified.”
‘I’m supposed to say being the father to a seven-year-old non-verbal son with Autism is very hard.’
“To put it bluntly, it’s like sipping on the world’s greatest champagne while people chugging warm Kool-Aid pity you for it.”
‘She has NEVER said a word. We have been building to this moment for 5 years.’ Mom’s moment with non-verbal autistic daughter
“I whipped around and asked her ‘Did you just say Mama?’ and she laughed then said it again!”
‘She shows me the beauty of the world. Through heart failure, low glucose, Down syndrome and near death, she smiles!’
“I never pictured myself in such a place with any of my children that I may no longer have them.”
‘When I was 12 weeks pregnant I was told he was going to have Down syndrome’: Mom didn’t want to hear ‘I’M SORRY’
“‘Your son either has an infection, or he has leukemia.’ My heart stopped in that moment. I didn’t know if I was ever going to be able to take my son home, or if I was going to lose him.”
