“We went to see Cora for the last time. I washed her hair and gently cleaned her body with a washcloth. I dressed her in our favorite headband and swaddled her tightly. Her sister gave Cora a kiss on her forehead. We told her to say goodbye. ‘Bye bye, Baby Cora.’ My mom took our eldest away so she could pass with my husband and I alone. She was so beautiful, looking at us with such deep love in her eyes.”
‘We begged her to let go. She kept fighting to stay with us. ‘We’ll be together soon. You need to go home,’ we said.’: Mom says daughter suffering from CHD ‘passed peacefully in my arms,’ is ‘finally at peace’
‘She looks like she’s been submerged under water.’ We never left the hospital. Her 321 days of life were there.’: Couple welcomes miracle baby ‘hand-picked’ by his ‘perfect sister in heaven’ after she died of congenital heart disease
“My heart was telling me she was beyond tired. She can only handle so much. Selfishly I wanted to keep her, regardless if that meant sitting in a hospital or not. But the pain my baby endured was enough to rip my heart out. After a long, hard fight, she left us to go to heaven, a place we all want to be. She was only 10.5 months old. We will indeed see Berkeley again one day, and oh my goodness, what a perfect day that will be.”
‘Dear teacher, I need to apologize for my wife and I. We are going to be knee-deep in your business.’: Self-proclaimed ‘helicopter parent’ pens touching letter about why he’s overprotective of son with congenital heart disease
“His lips get blue when he’s cold, but he’s ok. I have watched his heart stop, 3 times. If you ever have to change his shirt, you’ll see the proof. Be cautious with how the other kids discuss it. He’s proud of it now – but if you let another kid steal that pride, you’ll hear our parental helicopter blades ripping through the air.”
‘Mom she’s gone, I just know.’ I sat on my stairs with my front door open, in shock.’: How this ‘broken’ mother helps other parents of child loss heal after her own tragedy
“Seeing my sweet baby girl laying in a huge bed, much too big for her, made me fall to my knees. A nurse said to me, ‘Get off the floor, it’s so dirty.’ I was angry at her, I was angry at the hospital chaplain placing his eerie hand on my shoulder with no real comfort. No parent should have to write their child’s eulogy, or decide between a casket or an urn. I had absolutely no idea what I was doing.”
‘The doctor said it so nonchalantly, ‘Your baby has this.’ I looked at my husband. ‘What’s that mean?’ We were not ready for this diagnosis. The tears poured out. How is this happening AGAIN?’
“We were pressured over and over. ‘Get an abortion. Your time is running out. You know there’s a deadline on these things. He’ll be just laying still forever.’ At every appointment, this is what we were told.”
‘I had a stroke at 28 years old. Everyone assumed I was dehydrated or passed out. Soon enough, I was signing for my husband to take me off life support. Then reality hit.’
“We had a beautifully healed daughter. Our marriage was stronger than ever. That’s when everything changed, again. Words cannot describe how scared we were. We were again trying to hide our struggles behind fake smiles. That’s when they heard it.”
‘No eyebrows and eyelashes,’ she said. I hadn’t noticed his lack of hair. She ran her hand across his sweet face. There was a concern.’: Mom learns of son’s rare CFC syndrome disorder, but keeps ‘pushing forward’
“Our midwife came in and hugged me. ‘How are y’all doing?,’ she asked. It was all too much. What did she mean by ‘abnormalities?’ I stopped her and asked. That’s when the rest of the conversation disappeared from my memory. I would NEVER let this define Nolan.”
‘My husband and I watched in horror. ‘Don’t worry, he’s going to be okay.’ I nodded, but all I could think was, ‘NO, my newborn just had heart surgery, NONE of this is okay.’
“Every day I wonder – is today the day we get the call there is a heart for Max? Is today the day my son gets a second chance at life? He is still fighting hard. We refuse to give up on him.”
‘Is he gone?!,’ I yelled. It wasn’t my husband. He was so excited to be a dad. He was born to be one. I held his hand, telling him how much his unborn son and I loved him.’
“Scott just started a new job. We bought a house and were moving. He started not feeling well, but we attributed it to the stress of everything changing in our life. He went to work after getting me settled in the hospital. When he came back, he looked pale. I told him to get some rest, I would be just fine.”
‘I put you in your mom’s arms so you could be snuggled while you drifted off to sleep. I hid behind the curtain and shed silent tears. I still hear the echo of, ‘I’m so sorry, but he is gone.’
“I remember every single detail about this day. I knew what I was coming into, but in no way was I prepared for it. Your nurses before me had gotten you so handsome, dressed for your family. You looked so small in that big bed.”
