“You need to listen to the doctors. You need to breathe. Right now, you can’t see past those hospital walls. One day you will. One day you’ll see the beauty in all they did for your baby girl. One day you’ll be forgive the neurosurgeon who you found so blunt and cold. One day you will be thankful Eva was in your arms, and not on an operating table, when that last breath came.”
‘I’m sorry. Eva won’t make it.’ I sat, waiting for the doctors to stop the bleeding in her brain. The damage was too extensive.’: Mom pens letter to past self 13 months after daughter dies of Immune Thrombocytopenic Purpura
‘He is broken and breaking,’ the doctors said. ‘No hope. Always fatal. It would be kinder to terminate,’ they tell his mom and dad.’: Newborn with Brittle Bone Disease diagnosis defies the odds to become family’s ‘fighter’
“To us, there was never a question. In room 117, he came into this world. Crying, alive, and doing it on his own! The doctors were wrong. Was he perfect? No, he was perfectly imperfect, and he was HERE. Alive, and a fighter.”
‘Are you going to keep him?’ I sat in tears, softly rubbing my belly. ‘Please grow. Build arms.’ I was hoping there must be some mistake.’ Mom delivers baby with TAR Syndrome after miscarriages
“People would say how fast he’d grow and all he’d do. All those words felt like lies. They didn’t know about his arms. Then there were the people that did know, and that was worse. I couldn’t stand the pity. My son, my angel, was NOT ‘sad’. I cried daily and felt guilty for questioning if keeping him was the right thing to do.”
‘As my daughter was giggling, bursting with love in the next room, I was learning she wouldn’t be growing up at all.’ Mom’s 18-month-old daughter diagnosed with ‘Childhood Alzheimer’s’
“The phone rang. I grabbed a notepad, a pen, took a deep breath. How do you prepare yourself to answer a call with the results of whether your 18-month-old daughter is going to die? My mind shut off. All the air left the room. ‘Very serious, no cure yet, not sure, lots of research.'”
‘No eyebrows and eyelashes,’ she said. I hadn’t noticed his lack of hair. She ran her hand across his sweet face. There was a concern.’: Mom learns of son’s rare CFC syndrome disorder, but keeps ‘pushing forward’
“Our midwife came in and hugged me. ‘How are y’all doing?,’ she asked. It was all too much. What did she mean by ‘abnormalities?’ I stopped her and asked. That’s when the rest of the conversation disappeared from my memory. I would NEVER let this define Nolan.”
‘All I could think was, ‘Isn’t that what Dr. McDreamy does?’ My mom panicked. ‘Is this normal?’ He then asked if I frequently got migraines.’
“I was only 12, but got migraines a lot actually. It was to the point where people thought I was a hypochondriac. They would say, ‘she’s just a kid, why does she have migraines?”
‘The morning we left, I snuck into Olive’s room, kissed her cheeks and said goodbye, never knowing if I would see her again. I never knew how dearly I would come to love such a tiny little human.’
“She would cry many mornings as I cried, broken over the pain she was experiencing and longing with a deep ache for an adoptive family for her where she would know the love of a forever home.”
‘Take your shirt off!’ Instead of helping her, they pointed or laughed. She said, ‘I don’t want him to feel how he made me feel.’
“Her spine was collapsing. Her ‘best friend’ no longer wanted to talk to her. She lost the ability to sit up, walk, or do anything herself.”
‘With tears welling up in my eyes, I was only able to mutter one question: ‘But why does it hurt so much when I eat?’ Nobody answered me.’
“For what felt like an eternity, I laid quietly in my hospital bed, still surrounded by these strangers who were supposed to be some of the best doctors in the country, until a young-looking doctor standing across from the psychologist broke the silence, ‘Your head is messing with you, there is nothing physically wrong.'”
‘I sat on the line stunned. ‘There are only 34 cases ever on record. He is as rare as they come.’ I peered in at him and thought, they were wrong, somehow this was just a fluke.’
“I was anxious to make my way to the NICU. I walked into the very room our daughter had been in and instantly knew our situation was much different than before. The doctor didn’t waste a minute of my time trying to sugar coat the situation.”
