“I thought my husband would tell me to stop being so dramatic and ridiculous. After all, I was only 32 and I had a 0.0014% chance. Instead, he looked back at me, glossy-eyed, and said, ‘Maybe.’ My heart sank. The nurse unswaddled my baby and stared as my eyes filled with tears. I felt like my life, as I knew it, was over.”
‘The nurse handed my daughter back. I instantly noticed her teeny tiny ears. ‘Do you think she has IT?’ I looked at my husband in fear.’: Mom of 3 births baby with down syndrome, ‘She is the most amazing human being I’ve ever met’
‘I’m sorry, your son has Down syndrome. You have 2 weeks to make a decision…’ Oh, my Grady, NO prenatal test could predict your heart of GOLD.’: Mom celebrates the beauty of Down Syndrome in stunning photo shoot
“I was 21 weeks pregnant. Grady’s tiny feet were kicking in my belly as my husband grabbed my hand so we could sit down. I’ve relived those words over and over again in my mind; they burned deep into my motherly soul. It was THAT very moment my son was named a ‘decision’ and ‘broken’ to the world, and also the day we named him a gift from God.”
‘How could this happen? I thought things like this only happened to older moms or if it ran in your family.’: Mom of Down syndrome baby finds community of support, ’She was made for us’
“’She has a few markers that are consistent with Down syndrome.’ I felt like someone told me my entire family had just died. I felt like I was in a nightmare. ‘I’m not equipped to handle this.’ I listened to my nurse talk about her twin brother with Down syndrome. I couldn’t believe it. That was the first moment where I felt, ‘Maybe I can do this.’”
‘My principal said, ‘I’m adding a boy to your class. He’s from foster care and has Down syndrome.’ I felt this tug on my heart. ‘I want to take him home.’: Single mom, kindergarten teacher adopts down syndrome student
“I was still a single mom of a boy with autism living in a 2-bedroom apartment. My son was all grown. In comes this short, little peanut with those blue wrap-around glasses, all wide-eyed and ready to go. ‘I want to take him home.’ I couldn’t even get the words out before I started bawling!”
‘Why is your wife crying? Not everyone gets to have a perfect baby,’ the nurse said. We were shocked. I just wanted to be told everything was okay.’: Mom to son with Down syndrome says she’s in ‘the luckiest club there is’
“I heard whisperings at my bedside. I asked my husband, ‘Did you just hear what I heard? I think something is wrong with the baby.’ They looked little Henrik up and down, lifting him and setting him back down into the bassinet. I stared blankly in disbelief as my husband covered his eyes. ‘What does THAT mean?’ We couldn’t even form words. ‘This is very, very serious.'”
‘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 was unexpectedly pregnant at 40. ‘I’ll never have fun again. I’ll be caring for a child with so many medical needs.’: Mom births baby with Down Syndrome, ‘She is our adventure, not a burden’
“Something magical happened. I loaded her on my back. I couldn’t see her face, but I could just feel she was happy. I would show her the world, and I wouldn’t let her diagnosis stop her from seeing the amazing beauty it has to offer.”
‘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?!”
