extra chromosome

‘My daughter Penny is not a ‘mistake.’ She is perfection.’: Down syndrome mom explains the difference between ‘inclusion’ and helping special needs individuals ‘belong’

“People often feel awkward asking questions about my daughter. Penny gets sidelined from activities and events because they don’t know how to welcome her. The message of inclusion is, ‘We want you here with us.’ But belonging emerges from a deep desire to not just include the ‘other,’ but to love and be loved.”

‘My disabled child is not an ‘angel.’ He is not ‘celestial’ or ‘heavenly.’ He’s just like you, fully human.’: Down syndrome mom claims son ‘wasn’t sent here to teach you or me something’

“People often refer to my disabled son with angelic, heavenly labels. I’m his mom. I’ve seen things. I know better. When we project this ‘heavenly’ identity onto people with disabilities, we unknowingly strip their humanity and make them more ‘other.’ My son just wants to be loved for exactly who he is.”

‘I started to panic. I told my friend we were having this child regardless. ‘Would you really?,’ she responded.’: Mom grateful for taking the ‘scenic route’ with son diagnosed with Down syndrome

“I was home alone. I completely broke down after this phone call. A part of me believed he didn’t have it. Maybe a part of me just wished he didn’t have it. ‘Look at him,’ my husband told me. ‘Think of how hard he fought to be here. He is the best thing to ever happen to us, and we have this under control.’ As long as we all had each other, we would live the best life – and I believed him.”

‘The subject line read, ‘Down Syndrome Baby.’ My heart skipped a beat. That very morning a precious baby boy was born.’: Cancer survivor adopts ‘special gift’ son with Down syndrome after infertility from endometriosis

“When they had learned he was diagnosed with Down syndrome, they did not feel comfortable. I responded with, ‘Yes, yes, and yes!’ My lunch sat uneaten on the counter. I told my son, ‘You are going to be a big brother!’ With the biggest smile on his face, he shouted, ‘Yahoo this is the best day EVER!’”

‘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.”

‘This was an 18-month-old Caucasian little girl. ‘Do you want to move forward?’ I looked at him as he read it. The biggest smile came over his face as he wrote, ‘YES!’ 

“I told him this wasn’t a typical ‘let’s do it’ situation. They had just received information about the bio mom of the little girl, and she was pregnant. My jaw dropped. We had never considered two kids, let alone a newborn. I can’t say I was fully on board. The next month – I was pregnant.”

‘The doctor called…the blood screen came back, it’s not good.’ My heavy 22-week pregnant body fell to the floor. It’s normally at this point people want to talk about their options.’

“At worst he’ll never be able to feed himself and at best he’ll mop the floors of a fast-food restaurant one day,’ he said with a wave of his hand, dismissing any room for hope.  Option 1 is you terminate the pregnancy. We don’t do that here, but we have a clinic we can send you to.”

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