“I could hear unkind comments coming from behind and in front of me. I broke down crying and tried to get away as fast as I could. When I got the news, it was a relief to say, ‘This isn’t me trying to be annoying.’ It was uncontrollable.”
‘My head and spine rolled. The playground monitor watched me fall off the monkey bars. Kids called me ‘freak’. I didn’t see my spine tic as a problem, but her concern made realize something was wrong.’
‘Her oxygen levels dropped. She had blisters and dark swirls all over her body. Ever seen a movie where someone gets devastating news and collapses down a wall? That was me.’
“After about 8 hours of not being able to get our 5-day old daughter to eat, we took her to the emergency room. ‘She’s fine,’ they told me again. I kissed my 2-year-old. ‘I’ll be back as soon as I can. I’m just going to go make sure your sister is okay.’”
‘I excused the thought something was actually wrong. I blamed my husband’s ignorance. What do dad’s know anyway? I just held her earlier.’
“I’ll never forget. It was a breezy April afternoon. I can’t erase it from my memory– the phone call or the panicked voice on the other end. ‘There is something wrong with Avery… You need to get home.’ I had left to run a couple errands. It had been only minutes since I had last seen her.”
‘I woke up with the worst pain. ‘They’re just headaches,’ I said. Something in my mom’s heart kept pushing. ‘There’s something in your brain,’ the doctor said. I was 11, and so confused.’
“I was rushed to the PICU. I tried to stay calm, but I was terrified. I couldn’t help but think, ‘How could I have done anything wrong to deserve this?’ I hid everything behind a smile, but I knew my life would never be ‘normal’ again.”
‘She is literally an angel from heaven. But We. Were. Terrified. Instead of leaving the doctor smiling, we were scared. ‘There’s something wrong with the baby!,’ we sobbed.
“I was a first-grade teacher. My students didn’t know anything was wrong with the baby. It was difficult. They didn’t understand why I was out so often, why I wasn’t myself. I felt isolated. Alone. Misunderstood.”
‘I was at the subway station. My boyfriend heard a loud crash. Things went black. I awoke to an EMT standing over me. ‘Do you know someone who has it?’ I nodded.’
“Instead of contacting my mom, I decided to wait. ‘You have 24 hours to cry about the situation.’ All I could think was, ‘WHY?’ I sat in disbelief. Something inside me felt like I would be doing everyone a favor.”
‘In the coldest bedside manner, he said, ‘It is extremely rare and there is no cure. IF she lives, she will stop mentally developing at 2 months old.’ I just stared at him, my body slowly over heating.’
“I could feel the nausea setting in. I could feel the walls closing in on me. I could feel Bobby fuming. I told him get me out of there. I was BORN to be her mom. She is here to prove everyone wrong.”
‘We first noticed a weird movement when she was 5 months. Both arms and legs would come together in the air, followed by screaming and crying. My baby girl was fading away.’
“Something in me snapped. She was using our daughter for her own research. I was furious! It was so hard to be the hand that hurts your own child. I remember her dad always saying, ‘I’m so sorry baby.'”
‘Flashing lights would induce a seizure causing them to fall and possibly suffer life altering damage to themselves.’ Mom creates Sensory Sensitive Trick-or-Treating after growing up in foster care watching kids ‘struggle’
“While I understand Halloween is about fear, and scaring, the night itself is very exclusive to a certain demographic of children.”
‘When I sat at a grocery store with Caitlin seizing on the floor, and the 2-year-old in the cart, we truly had to come to grips with our limitations.’
“I was supposed to be the sick one,’ I thought. Stepping back felt like the ultimate failure, but me bleeding in the bathroom, and my wife unconscious on the floor, is exactly why we had to.”
