“It’s so incredibly heartbreaking to watch babies struggle through withdrawals and be powerless to make things better. The first time a baby left, I cried so hard I couldn’t see the steering wheel in front of my face.”
‘A single foster mom, I had 10 PLACEMENTS in my first year. One baby had a seizure and I spent weeks living in the NICU.’: Foster mom says, ‘There’s nothing else I’d rather be doing’
‘Brain swelling? 3 days ago, he had a COLD!’ He was pale and slightly blue. HOW did we get HERE?’: Woman learns how to ‘advocate like a mother’ through son’s rare epilepsy diagnosis
“We woke to what we thought was Matty snoring. Something didn’t sound right. The next few hours would consist of teams of doctors coming in and out of our room with solemn faces and stumped expressions. I ugly sobbed.”
‘Something’s wrong.’ She’d stop breathing. We’d have a blue baby in our arms. The whirlwind had just begun.’: Baby diagnosed with ‘ultra rare’ Gould Syndrome, ‘She lives a joy-filled life’
“It’s probably not a big deal.’ The team was stumped. They decided to do an ultrasound just for good measure. Our world was shattered in that moment.”
‘We don’t know what’s going on.’ Fear took over my body. ‘But I barely know him yet!’ No one could pinpoint what it was.’: Woman births baby with genetic mutation, ‘He was the purest soul’
“Our 4-month-old son was having seizures. To say we were scared is an understatement. We followed him in an ambulance. All we had now was hope.”
‘My eyes were full of tears for this abused 3-year-old. ‘Let’s do something.’ It was the sexiest thing I ever heard him say.’: Family of special needs child adopts siblings from foster care
“A story came on which almost made me vomit. ‘We have to do something! How can we just sit here with an empty room?’ We didn’t expect to receive THE call.”
‘She’s been gone too long.’ It was a freak event during birth. She stopped breathing twice, turning grey.’: 2-day-old baby diagnosed with brain bleed, ‘She’s our big adventure’
“I knew something was wrong. A nurse came in and said Ellis had stopped breathing in the nursery twice. ‘She’s at high risk for significant developmental disabilities.’ He encouraged my husband and I to have a conversation about what to do if our baby didn’t wake up.”
‘We want an infant to seize. MY infant. How terrible is that? I hyperventilate into my husband’s chest.’: Mom loses baby with rare genetic mutation, ‘He was pure magic and love’
“And then she says it. IT. ‘I’m worried.’ I know what this means. This means things are not good. THIS IS NEVER GOOD. I refuse to let any person touch my sleeping baby.”
‘I felt DRUNK. I had to spit in a cup two or three times daily and I could barely walk straight. ‘You have a baseball-sized tumor in your head.’: Health coach battles brain cancer and experimental surgery
“I was a complete and total workaholic-girl-boss with my own business. I started noticing headaches often and having spit-up episodes. Part of me thought it was anxiety. These episodes, I found out, were seizures.”
‘The nurse came in as I was flailing. ‘I don’t want to go!’ The ambulance thought I was 80, not 8.’: Woman celebrates 20 years brain tumor free, ‘My hope is to give back’
“My parents sat me down and told me I was going to need surgery. An 8-year-old, I cried and cried. I didn’t want to go in. When I woke in the recovery room, I learned it couldn’t be removed. We were devastated.”
‘Have you noticed he can’t use the right side of his body?’ The hits kept coming. I was powerless to stop it.’: Woman advocates for son with Refractory Epilepsy, ‘I’m thankful for every milestone’
‘But he doesn’t have it yet,’ they said. YET, YET, YET. The words pierced my soul. Why aren’t you telling me he’s going to be fine? Now, it’s okay to freak out.”
