“They told me, ‘She’ll grow out of these issues.’ If they didn’t see the potential in our daughter we weren’t having it. She fought like CRAZY to be here, and we weren’t giving up because of a piece of paper.”
‘What does this mean for her?’ I asked. ‘You can Google it.’ I was HYSTERICAL. But we didn’t give up.’: Woman becomes advocate after daughter born with Trisomy 18, ‘She makes this world a better place’
‘You’ll never be able to write or even wear a ring.’ I’d pull my sleeves over my hands. I wanted to be ‘normal.’: Limb difference advocate shares her journey, ‘Celebrate your differences’
“I was convinced I’d be judged based on my hands and feet. I made every effort to conceal my hands. I’d wear a cardigan to hide my scars. I wanted as little attention drawn to me as possible.”
‘Your baby has a funny eye.’ I looked down and saw it. The folded ear and almond-shaped eyes. The world froze.’: Woman advocates for special needs moms, ‘Our path is unique’
“Our daily lives have an element of ‘extra.’ Extra appointments, extra judgment, extra advocating, extra support. It also comes with extra love.”
‘Your dad and I, we didn’t work out. We failed to keep us all under one roof. We tried, but I am so sorry.’: Single special needs mom says ‘I hope I can be what you need’
“My boy, you looked so young tonight. So small, so little, and so baby-like. I couldn’t help but worry about how you will feel—how you will cope—when you aren’t so young. I hope I am enough. I hope I can be what you need.”
‘He will bite. He’ll take years to pick up skills others get right away. You’ll hear about Jolene trying to take Dolly Parton’s man 5,000 times.’: Special needs mom pens letter to future caregiver
“But seeing his smile when the concept clicks will be the most rewarding win you’ve ever experienced. Please, I beg you, never stop trying.”
‘Can we take him home with us?’ My little patient had fought more in 6 months than most adults. He was in custody of the state.’: Nurse adopts special needs patient, ‘He is our little boy forever and ever!’
“He was born 4 months premature and needed a ventilator to breathe. Nurses aren’t supposed to pick ‘favorites,’ but I couldn’t help but get lost in his infectious little grin. The state prepared him for foster care. On the day of the court case, my work phone rang. ‘Congratulations, it’s a boy!’ A shock of adrenaline hit me.”
‘Mommy, he called me a monster.’: Special needs mom urges ‘take 10 minutes to teach your child about differences’ before schools reopen
“If you don’t teach your child about kids like mine, I’ll teach my child about kids like yours.”
‘She said, ‘It’s pretty sad special ed kids will be allowed to attend school 5 days a week, but other kids can only go for 2!’: Special needs mom responds to school reopening backlash, ableism
“She continued, ‘The kids that are going further in life aren’t the special ed kids, sorry to say but it’s the truth. It’s easy to manage the class size and have them all attend.'”
‘When he outgrew cute, looks changed from compassion to disgust. Mood-altering drugs were doled out like candy.’: Special needs mom pens powerful letter, ‘He outgrew society’
“When he outgrew cute, the calls for help increased. Desperate for summer options for a 15-year-old in diapers. Desperate for anything to assist a non-verbal man child. The voices were silent. Or they whispered, ‘Sorry. Sorry. Sorry.’ When he outgrew cute, the walls caved in, and the house became a tomb.”
‘I cried and said, ‘Thank you.’ As I restrained my wailing 5-year-old, she finally found the vein. We both left bleary-eyed and spent.’: Special needs mom says ‘these little traumas add up in our hearts’
“These little traumas are hard to communicate. They remain mostly unseen. But they don’t leave us. We wouldn’t change our kids for anything. We wouldn’t change how they have changed us. But, damn, sometimes we wish we could lighten their loads.”
