“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 daughter Penny is not a ‘mistake.’ She is perfection.’: Down syndrome mom explains the difference between ‘inclusion’ and helping special needs individuals ‘belong’
‘You’re trying to kill my husband!’ He was ‘cleared’ to go home, then life-flighted. All eyes were on me.’: Veteran husband passes due to ‘malpractice, aneurysms,’ ‘our love didn’t end in death, it goes on forever’
“As tears fell from my eyes, he kissed my hands. He told me how much he loved them, how he could pick them out of a crowd of people. Before they wheeled him off to his final surgery, we made love. ‘If I’m going to die, I want to die happy!’ He sang the electric slide on his way out, trying to get people in the hallway to join in. When the surgeon returned, I saw blood on his shoes. ‘It’s okay to go now, John. It’s okay.’ I kissed his face. It was unrecognizable.”
‘Is your husband deaf, too?’ No, but he’s the most patient man I’ve ever met.’: Cancer survivor marries ‘hearing husband,’ claims ‘harships’ make her ‘glad to be born deaf’
“Yes, I’m deaf and my husband can hear. He reminds me when I leave the water running because I can’t hear it, or when my car is making a funny noise. He makes all my appointments over the phone. The amount of times I’ve said, ‘Huh? I have no idea what you’re saying,’ are endless. But I seriously couldn’t do life without him by my side acting as my ears and being my person. He makes me glad to be born deaf.”
‘What drugs did you take while pregnant?’ I locked us indoors and REFUSED to bring her out.’: Mom describes daughter with limb difference as ‘devastating’ at first, then ‘her biggest joy’
“’What a freak. Stay away from that little weird girl.’ People can be cruel. But my husband said, ‘Look at her. You have a beautiful daughter.’ She gives her siblings a run for her money. She is different, not less.”
‘He has what? Will he walk? Talk?’ I mourned the life we were supposed to have.’: Mom gave up on ‘life she imagined’ as son battles undiagnosed genetic disorder, eye condition
“The more severe cases pass away by the age of 1. ‘What? Pass away? Not my child.’ I was devastated I wasn’t going to have the life I imagined. But there is such power in accepting this new life.”
‘Mom, I’m sick of you helping me put my clothes on!’ It’s not natural to do this at my age.’: Young woman describes ‘frustration’ with dressing after being paralyzed, helps others ‘find independence’
“‘I can’t get these, they have buttons!’ I’m like a rag doll when she pulls my arms through my shirt. I still have paralysis in my shoulders, arms, and right hand. I’ve only dressed myself for about 4 years of my whole life. It’s time that comes to an end.”
‘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.”
‘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.”
‘She was unable to find the baby’s legs. She also couldn’t find the left arm.’ I squeezed my husband’s hand.’: Mom knows daughter with limb difference is in their lives ‘for a reason,’ she is surrounded by ‘love, support’
“There were still no legs. All I could picture were two tiny baby legs floating around in my belly with our baby girl. ‘No,’ she said. ‘They didn’t fall off. They just never grew.’ They laid her on my chest. ‘She’s here, she’s okay,’ we said through tears of joy. Our beautiful girl was here. All I could think was that we’d be able to go get mani-pedi’s together when she was older; but you better believe I’m not paying full price for one hand and two toenails!”
‘Lucky you,’ she replied with an eye roll. Yes, lucky me. My children have autism.’: Mom explains the ‘one time’ she’s envied is ‘when we get to enter an airplane first’
“I was waiting to pre-board a plane with my two young children when another passenger grabbed my shoulder. She told me I needed to wait for family boarding. I responded it was indeed our turn to go. ‘How’d you manage that?’ she asked. ‘We have different circumstances,’ I replied.”
