childhood illness

‘Jack was screaming for over 10 hours, no tears. ‘Did you forget how to hold a baby?’ The nurse took him out of my arms.’: Mom advocates for son with rare epilepsy after multiple misdiagnoses

“A tight smile on my face and a pang in my heart, I joked along, but something felt off. His painful cries stopped, and his little body became rigid with eyes that would no longer focus. I was done trying to not be the overly sensitive mom – it was time to sound some alarms. After only knowing our son for 5 short days, he was taken away on a helicopter in critical condition.”

‘Kerri, get a grip!’ the doctor said. I could only take Tylenol after surgery. I was sure I was going to die.’: Woman with arthrogryposis muscle disorder says ‘nothing is impossible with a fighter’s soul’

“I looked like a pretzel, but my mom wasn’t able to hold me for hours. Doctors started discussing ‘options.’ They told her I wouldn’t be able to do much. They said I would be better off if my parents decided to sign me over to the state. My mom immediately asked to be transferred.”

‘I had to wear adult diapers. ‘Do you realize how stupid you look?’ He was mimicking my tics in front of the class.’: Young woman with Tourette’s Syndrome finally finds help, ‘I got my quality of life back’

“I felt stupid because no matter how much I tried, I couldn’t stop. I would spend an hour straightening my shoes, trying to get them ‘just right.’ My dad had to sleep on the floor next to my bed and I had to wear adult diapers. I was left with my self-esteem in shatters. I believed I was a naughty kid.”

‘Bring me breakfast in the morning if we’re still here,’ joked the doctor. The treatments were painful, I tried to be brave.’: Woman describes her journey with Complex Regional Pain Syndrome, ‘I never had a childhood, but hope I can have a good adulthood’

“I was always fragile. When I wasn’t sick, I was injuring myself. My skin would turn purple and red with spots, and everything burned to the touch. I was probed with questions and faced with students’ and faculty’s disbelief. ‘You don’t look sick.’ Using the school’s only elevator resulted in harassment.”

‘The neurosurgeon apologized profusely, looked me in the eye and said, ‘You were right.’ She was walking all night, screaming bloody murder.’: Mom of chronically ill child urges parents ‘if you feel something is wrong, it probably is’

“During the day, she was completely normal. But at night she would pull out her hair and headbutt her bedroom wall in her sleep, begging me to ‘make it stop.’ She was deteriorating. I had to fight for answers. I had to beg for care for my very complex child. My gut was telling me something was being missed.”

‘You shouldn’t own a nice truck like that if you’re asking for help with medical funds.’ They don’t know about the 8 appointments a week.’: Mom to two medically complex children says ‘we are not going to stop our lives’

“Sophia often passes out. Her lips turn pure white and she vomits for 30 minutes. She injures herself, others, and pets. Her brother performs injurious behaviors too. It is a daily struggle with feelings being hurt and many tears shed. Everyone always says, ‘I don’t know how you do it.’ It’s simple. I do it because it’s what is best for Sophia and Grason. We are not going to stop our lives.”

‘Flesh was hanging off the roof of his mouth. ‘Your son has no immune system to fight this.’ We were trapped inside the house for months in total isolation.’: Mom to medically complex, autistic sons urges ‘find your village’

“His lesions were so severe he couldn’t eat. Rashes covered his entire body. We had to inject him with Pedialyte every 15 minutes just to keep him from passing out. In the midst of trying to be a normal family of 3, we suffered 3 miscarriages. Here we were, emotionally and physically exhausted, still yearning for hope. Little did we know, after 11 pregnancies, baby B would surprise us with blood in his diaper at just 2 months old. We knew something was terribly wrong.”

‘Can’t you control him?’ People mistake his disabilities for a naughty child.’: Mom shares autistic son with global developmental delay, ‘ We celebrate every little milestone like it’s a lottery win’

“We waited for his buggy. We had to walk through passport control with him biting, hitting, and screaming as he does when he’s upset. On the plane, he was upset and screaming. We had comments like, ‘Should have brought my headphones.’ He is, in fact, disabled and not just being naughty.”

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