trisomy 18

‘Please God, give her back! We already knew, she’s gone. I was weak from grief.’: Mom recalls loss of daughter, uses music to keep her memory alive, ‘No matter what I’m singing, I know she’s there, because she is my song’

“It was just me and Alice at the hospital. There was a soft glow from the bathroom, the door barely cracked. She laid on my chest, we were just there together, soaking each other in. Time stood still. She was so feminine, petite. I say, ‘I know whenever I sing, you are there,’ and I truly mean it. It’s as if I am sharing my beautiful, perfect daughter, and that brings me joy. I would find her singing to herself in her bed. I knew we would be connected through music forever.”

‘Our son’s entire 18 hours and 16 minutes of life, he was never alone. He was fiercely loved, deeply cherished, and widely celebrated.’: Mom turns loss of son’s ‘fleeting life’ to Trisomy 18 into ‘something of value’

“We were going to travel, tackle, and triumph over every inch of this world. I asked myself one very important question, ‘How can I transform my son’s fleeting life and too-soon death into something of value?’ I thought I lost the chance to have a great adventure with Cole when I lost him, but I think our great adventure together is really just beginning.”

‘Parts of our baby’s brain were missing. I spent all my time crying. My husband spent his time avoiding it all. ‘Please don’t plan a baby shower.’ I didn’t want to return things if my baby died.’ Woman’s baby diagnosed with HPE, claims there’s ‘hope after prenatal diagnosis’

“Everyday interactions like strangers asking about my baby in the grocery store felt like ripping open a wound. I tried to prepare my 3-year-old for the chance that his baby sister may not come home from the hospital. As my due date approached, we considered planning for a funeral. But how do you truly prepare for the death of a child? I felt so bitter.”

‘My doctor held my hand and started, ‘Tami…’ In that moment, I knew. I couldn’t breathe because I knew. Or at least I thought I did. My heart exploded with relief!’

“We were walking out of the house when a feather floated right in front of us. As we sat enjoying our morning coffee, another tiny feather made an appearance. On the drive home, I kept thinking … two feathers … what does that mean? But I had a hunch. I went straight to the bathroom and found a pregnancy test.”

‘Let them just hold their baby.’ He looked different. I’m filled with gratitude for her compassion.’: Couple learns of newborn’s rare genetic syndrome, encourages others to see ‘grace’ in their journey

“As we calmly talked on that moon-lit drive, my husband said something to me I’ll never forget. He broke a short silence. ‘If anyone would be trusted with a special-needs child, it would be you. You have the grace and patience to do this.’ I’m overjoyed knowing we’ve been included in an elite club.”

‘Thank you for taking a child in need.’ Without missing a beat, my husband replied, ‘We needed her more.’: After battling infertility, infant loss, failed adoption, couple adopt their ‘forever daughter’ from foster care

“Our phone rang. ‘I have a 16-day-old baby girl ready to be discharged…’ Truth be told, my husband and I agreed we wouldn’t foster an infant. NO WAY would we experience infant loss…AGAIN. We came up with so many reasons to say ‘no.’ We had a big vacation just 3 weeks away, 2 children under 2. The list goes on. We had 5 minutes to decide. Our hearts were heavy.”

‘And you continued the pregnancy anyways?,’ he said in a shocked and condescending tone, as he shook his head.’: Mom gives birth to child with Edward’s Syndrome

“My marriage was falling apart. He wanted to terminate the pregnancy for fear of inflicting unnecessary suffering on her. ‘What’s the point?,’ I overheard in the corner of the room. I was laboring alone. My husband and I’s marriage was in shambles at that point. My living unicorn was born with a full head of hair, and a palpable will to live. There wasn’t a dry eye in that delivery room.”

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