“If I could go back in time, I’d tell myself not to read about what my baby might NOT be able to do. She’s inquisitive and full of fun and mischief, and she LOVES broccoli. She is my inspiration.”
‘Her lungs filled with blood, and her heart stopped. We waited 7 years for the results.’: Mom of daughter with Cornelia de Lange Syndrome advocates ‘there CAN be life after diagnosis’
‘It could be worse.’ Yes. It could be worse. No, I didn’t lose my child. But our children, my child, have lost a lot.’
“Some of you are screaming at me right now, ‘WE GET IT – YOU HAVE A SPECIAL NEEDS CHILD.’ But I wonder still, do you get it? We don’t know if we will ever get to hear him say ‘I love you.'”
‘Through screaming, I coded at 1:25 p.m. 5 minutes later, my son was born not breathing. He was bagged and taken for CPR.’: Mom births baby with rare apert syndrome
“The next thing I knew I felt like I was drowning. I could hear codes being called as my birth got harder to take.‘He’s not fatal, but we have no idea what’s wrong.’ He had 10 fingers and 10 toes, but they were fused together. A first-time mom, I feared I was going to break him. Every irrational fear went through my mind.”
‘It’s a bambino!’ I was like, ‘what??’ All I saw was all the HAIR she had! Then 5 seconds later, she was whisked way to the NICU.’: Parents shocked by daughter’s Cornelia De Lange Syndrome diagnosis
“When I first looked at her, I knew something was different. I asked my husband, ‘What did you think when you went to see her?’ He replied, ‘She’s just so perfect and beautiful.’ I couldn’t shake what was in the back of my mind.”
‘She said I’d be a great foster mom. ‘Me?! Isn’t that for young people? We are grandparents, for goodness sakes!’: Grandparents take leap of faith and become foster parents
“We haven’t located any family.’ ‘When will we get her?’ ‘Tonight. Now.’ At 11:30 p.m., we brought our foster daughter, Laycee, into our home. Six months later, we got another call. ‘Mrs. Morgan? We have a 3-year-old little boy in the PICU. He’s been here 6 months and needs a home.”
‘Expect problems.’ I had heard those words before. ‘What kind of problems?,’ I asked, my voice trembling.’: Mom gives birth to son with Cornelia de Lange syndrome, ‘He’s shown me how to love’
“A dark thought crossed my mind. ‘Maybe David will die, and we’ll be able to forget this whole thing ever happened.’ As soon as that thought came, it was quickly followed by another. ‘God, please, please don’t let my baby die!’”
