childhood illness

‘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.”

‘Minutes after being born the doctors noticed my skin peeling from just being wrapped in the typical blanket they use with newborns’. Woman describes the pain of living with Recessive Dystrophic Epidermolysis Bullosa

“There’s often the misconception my illness is not a big deal and it’s ‘just a skin condition.’ If my illness was as minor as people tend to believe I wouldn’t have lost the ability to walk over the years, or my hands wouldn’t be webbing from years of scarring and friction.”

‘Before I put her to bed, her face turned pale. She was screaming in pain. My husband read the word ‘leukemia,’ and I had this sickening feeling. The inevitable truth was seeping into our lives.’ Mom gets hit with triple diagnosis: Down Syndrome, Leukemia, & Typhlitis

“A few hours after going to the doctor, I was out shopping with my husband. He handed me the phone. ‘It’s the pediatrician.’ My heart stopped. Why was he calling so soon? And why was HE calling and not the nurse this time?! Then, he said the words I’d been fearing since Tessa’s birth. I didn’t have the strength to stand. I fell to my knees. I had no idea how to move forward.”

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