Down syndrome

‘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.”

‘How could this happen?!’ I found myself unexpectedly pregnant at 40. Then the doctor said, ‘Syndrome.’ I held back tears.’: Mom births baby with down syndrome, ‘The minute I saw her sweet little head red hair, I fell in love’

“My phone rang while I was asleep. It was my doctor on the other end. ‘Your testing came back positive for Trisomy 21. I’m sorry.’ I started ugly crying. ‘How on Earth could this happen to me?!’ At 36 weeks pregnant, I noticed the baby hadn’t been moving. I did all the things I knew I needed to do. I ate, drank, lay down on my side. Still, I didn’t feel anything. I called the nurse. ‘Come in right away.’ I drove so fast. She hooked me up to monitors. I knew immediately my baby was in trouble. She was in distress.”

‘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.”

‘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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