“Our 6-week-old son lay in a hospital bed next to us, all hooked up. The prognosis was grim. Watching your child have seizure after seizure, knowing there’s nothing you can do, is gut-wrenching. He might not understand what’s happening, but he’s so strong.”
‘He’ll have severe disabilities.’ Each smile is priceless. We have an even greater appreciation for the ‘little things.’: Mom advocates for son with undiagnosed condition, ‘He’s one of a kind’
‘She only has a 50% chance of survival.’ I was just a teen! But I HAD to give her a fighting chance.’: Mom births daughter with Rett Syndrome, ‘I choose to live in the present’
“The doctor sent me straight to the hospital. ‘You could have a stroke.’ I vividly remember the first time I held her. Her eyes would roll into the back of her head. I’ll never forget the fear I felt.”
‘I sobbed, clutching her to my chest. ‘There’s an abnormality.’ It has no treatment, no cure. It’ll NEVER go away.’: Mom advocates for ‘one in a million’ baby with Alternating Hemiplegia of Childhood
“In fleeting moments, little movements would catch my eyes. I asked her pediatrician, ‘Are you sure there isn’t anything going on?’ One morning, I knew something was wrong. I knew it was bad, but I had no idea how bad.”
‘She may not survive surgery.’ For 9 days, her chest remained open. She wasn’t the baby I expected.’: Mom has photo shoot in ICU before preemie passes to ‘make each day beautiful’
“Her body was too small to close over her swollen heart. Piles of machinery overwhelmed her metal crib. I hesitantly brought a small box into the ICU. Inside was a blanket and matching hair bow. I was shocked by how stunning she looked.”
‘This is hell,’ my husband sobbed. We shouldn’t have googled his potential diagnosis. ‘It can’t be real!’: Son diagnosed with rare Noonan Syndrome, ‘Our feelings for you never changed’
“Your growth would probably be slower than other babies. You might have trouble walking or talking or eating or going to school. We wouldn’t know until we knew. One thing we knew: you are scrappy as hell.”
‘The doctor came into the waiting room. ‘Something has gone terribly wrong.’ His temperature skyrocketed.’: Mom recounts son’s experience with Malignant Hyperthermia, ‘It was a day I will NEVER forget’
“He would be so confused as to why he was restrained and had a tube down his throat. I stood bedside, looking at my strong boy who was now lifeless. My world came crashing down. I reflected on how I was going to help my strong dude recover.”
‘I’m so sorry I can’t take this away.’ He looked up at me with absolute perfect clarity. ‘It’s okay.’: Parents ‘astonished’ by infant son’s miraculous response, lose him days later to rare brain tumor
“We stood in astonishment. Prior to this, he’d only known how to say one word: ‘Dog.’ My wife and I leaned in to tell him we loved him. He looked up again and said, ‘I love you.’ We held his little hand, his little frail body in my arms, and begged him to visit us. I asked him to watch over his siblings. We put him in the black Suburban, and watched them drive away.”
‘He had a really rough go. Joe is our youngest child. Neuroblastoma is a really crappy cancer to have.’: Mom says her son is ‘doing beautifully’ after battling stage 4 neuroblastoma
“‘I’m going to play soccer and baseball in the fall,’ little Joe said, now in post-treatment. I still believed childhood cancer was rare. I even believed the kids who did get cancer would be fine, assuming they were treated at the best hospitals and didn’t have any unusual complications. I didn’t believe kids like mine could get cancer. It wasn’t until I was officially a ‘cancer mom,’ that I would understand.”
‘This is when my daughter is most beautiful, covered in layers of extra skin. Celebrate her, instead of giving me pity.’: Mom of daughter with Harlequin Ichthyosis wishes people would ‘stare at her beauty’ instead of ‘hiding their stares’
“I remember vividly the first time Anna opened her eyes. She stared with such intent that I couldn’t bring myself to look away. The swelling from her eye lids had finally gone, and she opened her eyes and stared directly at me. I get mesmerized by the beauty in her skin. I know she was made for something special.”
‘What’s wrong with her fingers?,’ my husband asked. ‘They look strange, but they’re perfect.’ Then he saw her toes.’: Parents surprised by daughter’s Apert Syndrome diagnosis, ‘she just wants to be loved’
“The doctor yelled to get the NICU team as soon as possible. They came in so fast we could hardly get a picture. I don’t remember anything afterwards except that my husband googled her syndrome based on her appearance, and I was left alone in the delivery room. No husband. No baby. I asked for a Diet Coke. They only had Diet Pepsi.”
