Down syndrome

‘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.”

‘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.”

‘My ears got hot, my blood was boiling. I took a screen shot of his soul-crushing report card. My mommy instinct was pissed.’: Mom appalled by son with Down syndrome’s report card, ‘Stay angry. Keep fighting for your child.’

“The envelope showed up in Judah’s backpack. I wasn’t expecting his report card, but I was eager to see how the goals we put in place manifested themselves. Imagine my surprise when that paper was littered with the lowest scores possible. My stomach lurched. My logical brain understood, but my mommy instinct was still pissed. Imagine how this little boy will feel when he understands what those 1’s will signify?!”

‘Wait, you’re not kidding? 30 seconds ago, our life was perfect.’ I suddenly needed him in my arms. ‘This is not your fault. You are just a baby.’: Couple shocked by son’s Down syndrome diagnosis, ‘You’re not the baby I thought you were, but you’re still MY baby.’

“We were on cloud nine: our baby was here, he seemed to be in perfect health. I remember hugging him, saying, ‘Welcome to our family! I’m so happy to finally meet you!’ I commented on his nose and ears, but again, no red flags. Babies fresh from the womb all look like aliens anyway. His face suddenly looked completely different. I remember thinking, ‘This is not your fault.’ From the first moment I met him, he’s been whispering to me, ‘It’s okay, Mom. There’s nothing to be afraid of.'”

‘My friend thinks you’re cute.’ A co-worker handed me a napkin with a phone number on it. ‘My family doesn’t know I’m gay.’: Woman loses partner to stage 4 lung cancer

“One night, my wife couldn’t lift her legs up the two steps on the front porch. She was carrying a bag with a t-shirt in it. The weight of it was enough to make her fall. I went out to find her hunched over, completely unable to move. She stayed there, crying and yelling, ‘Just leave me out here! Let me die!’ I knew something was wrong. In the freezing cold, I dragged her. ‘How do we tell the kids?’ The numbness was unbearable.”

‘There is a 90% chance your baby will be born with Down Syndrome.’: Couple prepares for rare Down syndrome Diagnosis, ‘we knew a diagnosis didn’t change our love for this little life inside of me.’

“I had no idea just a couple of days later, we would experience a loss and pain we were never prepared for. Our loss made us stronger. ’Your scans showed a high probability your baby will have Down Syndrome.’ How can I be a good mother when I hate being pregnant? I just didn’t want to be pregnant anymore.”

‘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.”

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