“I’m told, ‘You will never see research being done because you’re too rare.’ I have lived my life with fear, against a silently ticking clock.”
‘You may only have use of your eyes and voice.’ I was told, ‘You should live a less ambitious life.’: Woman with GNE Myopathy says ‘knowing my body is temporary has caused me to truly live’
‘I am not sure how you do it.’ More than one child is rushed to the emergency room at once. If I’m being honest, I’m not sure either.’: Special needs mom births 3 children, fosters and adopts 8 more
“After having my own accident that caused a permanent disability, I had to advocate for myself and my kids. 8 of 11 of them are special needs. There are many days I want to pull my hair out, but I never look back and think, ‘Why me?’ I am forever grateful to be their mama.”
‘He let out a big sigh. ‘I feel funny asking, but does Autism last forever? Will he have it when we are old and in heaven?’: Mom to autistic son urges ‘have the emotional and honest conversations’
“I didn’t answer right away. I wanted to listen. He went on to say, ‘I remember when I was little mama and Cooper had it. I couldn’t figure him out. I used to think he was from a different planet because he screamed all the time.’ He sighed. ‘I just wish sometimes it would go away so we could talk.'”
‘What is she doing?’ I was rolling around the block when a little boy saw me and fell off his bike. He couldn’t take his eyes off me.’: Woman in wheelchair touched by stranger’s inclusive language
“The father mentioned nothing about sickness, weakness, disability, pity. There was no shaming the kid for asking inappropriate questions or for staring. No apologizing to me.”
‘What will my child become?’ My differences were thought of as less ‘cool.’ I was the target of bullying, both verbal and physical.’: Man with cerebral palsy says ‘you are more than the struggles you face’
“Once I made my way to middle and high school, things became a struggle. A disability is a difficult diagnosis, yes, but it isn’t the be-all, end-all of your story.”
‘Kerri, get a grip!’ the doctor said. I could only take Tylenol after surgery. I was sure I was going to die.’: Woman with arthrogryposis muscle disorder says ‘nothing is impossible with a fighter’s soul’
“I looked like a pretzel, but my mom wasn’t able to hold me for hours. Doctors started discussing ‘options.’ They told her I wouldn’t be able to do much. They said I would be better off if my parents decided to sign me over to the state. My mom immediately asked to be transferred.”
‘Did you think we were ‘lucky’ to stay in bed while you go to work? Reach out to us.’: Fibrodysplasia Ossificans Progressiva warrior says, ‘Check on the people you know who have to stay home for disabilities’
“How have you viewed their lifestyles? Are you already starting to get bored at home even though it hasn’t been that long yet? Think of those who were already isolated away from society, and those who will continue staying inside long after the pandemic ends.”
‘I was awake, shaking in fetal position under a fence with my spinal chord split in half. ‘You need to start funeral arrangements. She won’t make it till morning.’: Paralyzed woman celebrates life after forced into motorcycle police chase
“He was drinking a lot and took some pills. I was forced onto his bike and he took off very fast, driving recklessly. Terrified, I clung to him. A cop quickly pulled behind us. He sped off at 100 mph. That’s when it happened. I didn’t wake up until a month and a half later. ‘This can’t be real.’ I was heartbroken with a pain I’d never felt before. ‘Where are my babies?!’ When they came to visit, they wouldn’t even come near me. They couldn’t recognize me anymore.”
‘I fell straight through the attic to the concrete garage floor. Cheated on for years, all I could do was wonder, ‘Why? How long before he decides to move on?’: After accident, woman says husband has ‘shown me what real love looks like’
“Life seemed perfect. Everything was falling into place. Then a tragic, freak accident changed everything. ‘Your bones resemble a scrambled jigsaw puzzle.’ I am learning to walk again. ‘Whatever happens, we are in this together.’ He had to lift me up, carry me around, bathe me, and feed me. His life changed just as much as mine did.”
‘When you see me in a handicapped parking spot, you roll your eyes. My husband explains, ‘She doesn’t get better from this. She ultimately dies from it.’: Woman with multiple chronic illnesses urges ‘not all disabilities are visible’
“When you see me in a handicapped parking spot, you might glare. You may even be like those who have said something rude or left a nasty note on my windshield. I sport titanium rods and screws that go from the base of my head to my mid-back. You wouldn’t know by looking at me I have a terminal illness.”
