PICU

‘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.”

‘You show up when you’re tired. You hug me when I cry and don’t back down when things look bleak. I am on sacred ground with you.’: Mom shares touching ode to pediatric nurses

“When people ask me, ‘What is it like to live in the hospital?’ the first images that come to my mind are your faces and your hands. You listen and teach. You take the time to help us understand. You bring me coffee and chocolate. You look me in the eye when you give good or bad news. I have never been more honored to witness anyone fulfill their calling in life. I am on sacred ground with you.”

‘I don’t want this life. I’m not cut out for this!’ I heard ‘I’m sorry’ on the other end. Adrenaline began, my face got hot. Then the tears started to roll.’: Boy with down syndrome diagnosed with acute lymphoblastic leukemia

“Oliver was on vacation with his dad when I got the call. ‘He stopped walking.’ Weeks pass. His lymph nodes are swollen. Something just wasn’t right. I remember telling my boss, ‘I have to leave!’ Before I could even get a response, I was gone. I’m worried the ER doctor missed something. The doctor is quiet. I can see in her eyes she is trying to stay calm for me, but something is there. I scream. Deep down, she knows something I don’t.”

‘Your baby’s heart is on the wrong side.’ I cried. ‘PLEASE be with him, I don’t want him to be alone.’: Mom devastated to learn of newborn’s heart defect, wishes she could ‘take his place’

“The sonographer went very quiet and kept putting her body in strange positions. She said the baby was laying awkwardly. We had to sign papers prior to his surgery warning us of the risks… death being one of them. We were so helpless. He was so tiny. It didn’t seem fair. I was so excited to see my little boy and give him a big kiss.”

‘Yellow!’ Micah pointed to an adorable little chick with a big smile. Then, he spiked a 106 fever.’: Woman loses 3-year-old to Arthritis, ‘I am a mother, that will never change with time, space, or death’

“‘Are you SURE?’ I asked the doc, reading the report. ‘It would be like being struck by lightening TWICE. He’s fine.’ They were wrong. He was SICK. Sicker than any baby I’d seen. I walked into the PICU bathroom, shut the door. I screamed, moaned, punched the mirror, and cried the guttural tears of a mother who already knew how the story ends, because she’d lived it before. I was reliving my worst nightmare.”

‘The day my baby died, I won tickets to build her a bear. ‘Can I still use them even though she passed?’ Their response? ‘No. The guest must be present.’ My heart shattered in a million pieces.’

“It felt like the perfect thing to do in order to honor and remember her. All I wanted was my baby back. I wanted to be like all the other moms who get to cuddle and snuggle their baby after they are born. A simple no would’ve been okay, but their words felt like a stab to the heart.”

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