extra chromosome

‘At least he doesn’t…’ As a special needs parent, I hear this all the time. Each one takes a little slice out of me I can’t fill back in.’: Special needs mom urges you to ‘validate’ those who ‘give you a glimpse of their challenges’

“I don’t let very many people into our lives, mostly because I’m spent. And one of the reasons is because of things like ‘at least.’ When you ‘at least’ me as a complex parent, I feel minimized. I feel unheard. I feel compared. If a person gives you a glimpse of their challenges, honor their experience. Validate them. Meet them where they are. And if you can’t think of anything else to say, ‘Can I get you coffee or tea?’ always works.”

‘I don’t want this life. I’m not cut out for this!’ I heard ‘I’m sorry’ on the other end. Adrenaline began, my face got hot. Then the tears started to roll.’: Boy with down syndrome diagnosed with acute lymphoblastic leukemia

“Oliver was on vacation with his dad when I got the call. ‘He stopped walking.’ Weeks pass. His lymph nodes are swollen. Something just wasn’t right. I remember telling my boss, ‘I have to leave!’ Before I could even get a response, I was gone. I’m worried the ER doctor missed something. The doctor is quiet. I can see in her eyes she is trying to stay calm for me, but something is there. I scream. Deep down, she knows something I don’t.”

‘Mama, you’ve been chosen!’ I met my baby for the first time in someone else’s house. My heart raced.’: Young couple adopt baby with Down syndome, ‘He is the light of our lives!’

“I was 19 when I decided I was going to adopt a baby. My husband shrugged, smiled, and said, ‘Sounds good to me!’ We had 4 days to do…everything. We laid in bed, trying to fathom the idea this would be our last night alone. When the day came, the grief rocked me to the core. While we were gaining a son, his first family was losing a son.”

‘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.”

‘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.”

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