advocate for Down syndrome

‘Why is your wife crying? Not everyone gets to have a perfect baby,’ the nurse said. We were shocked. I just wanted to be told everything was okay.’: Mom to son with Down syndrome says she’s in ‘the luckiest club there is’

“I heard whisperings at my bedside. I asked my husband, ‘Did you just hear what I heard? I think something is wrong with the baby.’ They looked little Henrik up and down, lifting him and setting him back down into the bassinet. I stared blankly in disbelief as my husband covered his eyes. ‘What does THAT mean?’ We couldn’t even form words. ‘This is very, very serious.'”

‘Patty, I can feel him, we have to go.’ There was no time to talk. ‘We love you, I’m so sorry.’ His last heartbeat was lying on my chest.’: Moms are given terminal diagnosis for baby boy, ‘We decided to celebrate. He was going to be loved.’

“I didn’t want to waste any moment I could have with him. It was hard not to notice his body changing, the color leaving, his skin hardening and getting so cold. I often wonder if I made the right decision keeping him with me for so long–but I know I did. Then the time came to hand him over. The nurse kept telling me to take as much time as I needed and I finally had to tell her, ‘If you keep telling me that, I will never leave.’ He gave me the biggest gift of all: he made me a mother.”

‘My baby was at ‘high risk’ of having Down syndrome. I mourned the baby I thought I was going to have, what she would look like, if I would be able to look after her.’: Couple ‘mentally prepares’ after Down syndrome diagnosis

“The sonographer saw a tiny little egg. It turned out that tiny egg was the one that was going to make me a mum. The very next day, I had a phone call, telling me my baby was at ‘high risk’ of having Down syndrome. Until she was born, it was easier to pretend everything was normal, so we did just that.”

‘Yes, Meg. The baby is healthy, stop worrying.’ Coward. She knew. I saw it and felt sick. I didn’t want to hold her.’: Mom unknowingly births baby with Down syndrome, ‘I want to shout her worth to the world!’

“I grabbed a nurse’s arm as she walked by. ‘What’s wrong, is she okay?’ Stumbling over her words, she responded with, ‘Congratulations, she’s beautiful!’ Coward. She handed her to me before quickly walking out of the room, like she was some kind of damaged goods. Her tongue could barely fit in her mouth. I didn’t want to hold her, feed her, or even look at her. I was furious. All I could hear was that damn whispering.”

‘Don’t take her home with you,’ I was told. ‘If you have other kids, she’ll be a detriment to them.’ How wrong they were.’: Mom keeps baby, now world’s first ‘working model’ with Down Syndrome

“I’d never taken Madeline to a fashion show before because she was always sick. When her health increased, we walked in as I thought to myself, ‘What have I done?!’ I knew full well my daughter would want to be on that catwalk, too. Sure enough, after the show, she turned to me and said, ‘Mom. Me. Model.’ I’m the type of mom to do whatever I can to make things happen. Little did I know what this all would turn into.”

‘I got the test results. I felt I let my husband down. Like I somehow failed to give him the ‘perfect’ baby. The silence was deafening. I kept thinking, ‘Why me?’ Then I thought, ‘Wait, why NOT me?’

“I had a woman sob in my arms out of sympathy. I remember telling my husband, ‘Do you think we’ll ever laugh or be happy again?’ I figured I had 3 choices. Give up, give in, or give it everything I’ve got. I had a little boy growing inside me who I needed be strong for. I went with option 3.”

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