“Lethal. No cure. The geneticist tried to make us feel better by telling us it was not our fault, it wasn’t anything we had done, or could have done to prevent this. Of course, that didn’t make us feel better.”
‘We see abnormalities.’ An exciting morning turned into a nightmare. I silently prayed.’: Baby diagnosed with Thanatophoric Dysplasia, ‘We wanted to enjoy the time with our baby in my womb’
‘What’s it like being a little person?’ I was touched without my consent and forced to apologize. I was so naive.’: Woman with Achondroplasia urges ‘I’m not a little person, I’m not a dwarf, I’m just Chandler’
“For so long, I thought the compliments were genuine. People would brag about how smart my brother was and be in awe over my sister’s art, while I got a pat on the head for just being…me. When I’d move my head out of the way and say, ‘Don’t pat my head,’ I got, ‘Your daughter shouldn’t talk to me like that. You should teach her manners.’ If I said ‘no’ when being asked if they could shake my hand, because they ‘always wanted to shake a little person’s hand,’ I was ‘rude.’ I felt trapped.”
‘They blurted out, ‘Omg, look at IT!’ Children ran up with cell phones, loudly yelling and recording me. I left the store traumatized.’: Woman with dwarfism shares unique journey
“When I wake up every morning, I don’t look in the mirror and see dwarfism. But I know once I step outside the door, somebody will remind me. A common question is, ‘What do you want to be called? Dwarf, little person, LP, midget?’ I would like to be called Amy, because that’s my name. At the end of the day, I want people to remember who I am, not what I look like.”
‘Your daughter will never be more than 2 feet tall.’ My husband and I broke down in tears. ‘…If she survives.’: Mom births baby with rare Thanatophoric Dysplasia, ‘I will never give up on her’
“The news broke me and honestly ruined my pregnancy. I prayed our baby girl would grow, that her little chest would expand to survive this birth. I wanted Paisley to have a life, no matter if it was only for a few seconds or a few years. She deserved the world and I was determined to give it to her.”
‘We need to talk. Your baby’s head is BIG. His fingers look like a starfish.’ WHAT? He passed the Kleenex. I lost it.’: Mom births son with Dwarfism, ‘he was made special on purpose’
“I thought he was joking. ‘Ohhhhh, I was hoping to walk in and see that you two were just very short. Have you ever seen the little people shows on TV?’ What the heck? He was convinced our son was a dwarf. He double checked measurements. He was actually serious! ‘What will our friends think?!’ I couldn’t breathe.”
‘There’s something wrong with her!’ My mom looked at my triangular-shaped face.’: Woman with rare form of Dwarfism defies ‘grim’ life expectancy, ‘never gave up’
“My mom was pregnant with twins when doctors quickly realized I was growing a lot slower and smaller. Being a nurse, she knew diagnosis was grim. My dad got a call from my mom saying her water broke and he needed to get back to the hospital as fast as he could. Baby A, which was me, was ready to come out and see the world! Everyone else was not.”
‘Do you have a will?,’ my nurse asked. ‘No,’ I replied. ‘You need to get your affairs in order for your daughter, if anything should happen to you.’ What did this mean? I had failed her.’
“After writing out a will, I was wheeled off to the operating room. All I remember is waking up in a glass box with the curtains wide-opened. It was so eerie. I could hardly find my voice and was unable to move my body.”
‘Wrap this around your arm and place the utensil here’, they’d say. That didn’t last long! She is ‘BOUT IT!’ I couldn’t accept this disability. Where has it been? Why now?’
“There were no ‘accommodations’ growing up. I had to clean my room. I had to have my homework finished before I could play. If I got in trouble, consequences came with it. I was 12 years old and approached with a life changing choice. You’re disabled! What are you going to do?”
‘I think the doctor is going to want to discuss things on the ultrasound with you.’: Parents overcome son’s dwarfism diagnosis
“The doctor told us he was confident our baby had either Trisomy 13 or Trisomy 18. When I asked what that meant, he stoically stated that it meant our baby was not going to survive. He was PERFECT – and he was ours.”
‘Six little words made my whole world fall apart. ‘Your baby may not make it’ – I jumped off the exam table and threw up in the trash can.’
“I was 22, pregnant with my first baby boy. I should’ve been ecstatic, preparing to welcome my sweet boy. Instead I was attending appointment after appointment to find answers as to what was wrong with him.”
