extra chromosome

‘A woman on the bus kept pointing at Meriton and touching me on the back. ‘Is he sick?’ She was loud and kept repeating herself.’: Woman urges ‘there is no cure for human being’

“The whole time I was trying to show Meriton we are equal, something was missing. I got a tattoo of a chromosome and said, ‘This will make us equally different, forever.’ The only sickness in life is the bad attitude towards people with special needs, and I’m not going to stop working to show society different.”

‘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.”

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