PICU

‘I got the text, ‘Lex, we had an accident, but I don’t want to worry you.’ My son was the baby who literally fell onto his head accidentally.’: Mom to become NICU nurse after miracle baby survives traumatic brain injury

“I was told by a doctor, ‘You need to accept your sons’ fate. You are severely in denial.’ I was 20 years old and terrified. I was labeled as the Mom who ‘wasn’t emotionally responding appropriately.’ The media and local news blew it up into something it wasn’t.”

‘Ethan screamed, ‘NO! How am I supposed to live without her?’ He hit the wall and ran out of the room. She’d gone too long without oxygen.’: Girl loses life to influenza, ‘We miss and love her so much’

“The doctor reassured, ‘Today is the sickest she’ll be. Once the anti-virals kick in, she’ll be on the mend.’ Around 3:00 a.m. I awoke and thought, ‘Finally! The medicine is working.’ I lay there a moment longer and got a sick gut feeling. I said her name and heard nothing. In the police car, there were no sirens. There was no rush to the hospital. ‘This is where I give you the if-this-was-my daughter speech. It’s time to let go.'”

‘Mommy, I done. I done, I so tired!’ ‘Should we stop compressions?’ I pleaded with them. They wrapped her in a blanket, let us say goodbye.’: Mom loses daughter to flu, ‘This is an unbearable situation no family should face’

“She asked, ‘Where’s my mommy?’ I was standing right beside her. She had a confused look, her pulse was RACING. I took Ayzlee to the ER thinking she was just dehydrated and needed fluids. ‘This will be a quick trip.’ We’d all had our flu shots. Never in a million years did I think my beautiful, healthy 3-year-old would be fighting for her life.”

‘The doctor said, ‘Not to worry. It’s just the flu.’ His throat started fluttering. They worked feverishly on his little body. I couldn’t watch.’: Mom urges ‘we need to do better’ after losing son to flu

“I looked at the nurse with tears in my eyes. ‘That little boy is the only one I have.’ His eyes rolled back. The physician started sobbing. I held up my hand to push her away. ‘I need you to come in here. I need you to talk to your son.’ I took Joseph’s hand, looked into his beautiful face, and begged him to stay. ‘He’s going to just wake up. He’s going to wake up, and we’ll go home.'”

‘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.”

‘I could feel her dark, navy lips saying, ‘Hi, Momma! I miss you!’ I couldn’t feel anything but the the weight of her dead body.’: Woman grieves 2-year anniversary of daughter’s death, ‘Grief will forever be part of our family’

“Grief looks like walking around Hobby Lobby with a beautiful, happy baby boy and tears running down my cheeks. How do you even pick flowers for your daughter’s grave? Can anything I buy show how much I love and miss her? My rainbow baby is making the cashier laugh. I wonder what she thinks I’m buying the flowers for, and if she can feel the grief roll off of me.”

‘I went on countless job interviews, but I didn’t ‘look the part.’ The second they saw me, the whole vibe changed.’: Woman with Nemaline Rod Myopathy embraces disability, ‘I want to be seen for the smart, fun, boss babe that I am’

“After graduation, I was excited to take on the world! That feeling quickly died. Every employer assumed I wasn’t qualified. I didn’t have a specific ‘look,’ or I didn’t fit the part. I realized I didn’t want to work someplace where I would be judged by the way I look, not by the work I contribute. Appearances matter, but they matter even more when you’re disabled. And the hardest part about being disabled isn’t being disabled. It’s fighting to be seen as an equal.”

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