CHD

‘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.”

‘I had a stroke at 28. Everyone assumed I was dehydrated. Soon enough, I was signing for my husband to take me off life support.’: Young couple share struggles through miscarriage, stroke, ‘We were given a second chance, we’re not going to waste it’ 

“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.”

‘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.’: Wife loses husband right before giving birth

“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.’: Nurse recalls ‘absolute honor’ of caring for CHD patient

“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.”

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